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Vicki’s Voice

my inspiration, my words

In 1987 we began our journey of labor and love. Since then, Jeffrey’s Foundation continues to thrive and it has given me the invaluable opportunity to meet many patients and their families. I have listened to you, communicated with you, and created meaningful connections with you. My inspiration comes from each and every one of you; from North to South, East to West, and everywhere in between. No ocean or border can stop our community from growing together.

  • Do Something and Take Action!

    In keeping with our mission of Doing Something, we encourage our community members to speak up, act, and advocate for newborn screening for SCID if their countries don’t already participate.

    Since 1987, our aim has been to promote hope, advocacy, and action. We are devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures for Primary Immunodeficiency. We are motivated by Jeffrey’s legacy—we could not let his life be in vain—and we aim to motivate our community to follow our efforts to Do Something until every country across the globe is participating in a comprehensive newborn screening program. Newborn screening saves lives—it’s that simple.

    If you’re looking to take action and get involved, now is a great time to contact your representatives and let your voice be heard.  We’ve prepared a template letter so that anyone can join our efforts to promote public awareness for newborn screening for SCID. Just copy, paste, and fill in your information to get started.

    Together, we can, and we will, save so many more precious lives!



    City, State, Postal Code


    I’m reaching out on behalf of the Jeffrey Modell Foundation and the patients they serve worldwide to request that (COUNTRY) add Severe Combined Immune Deficiency (SCID) to the core newborn screening panel without delay. 

    SCID, also known as “Bubble Boy Disease,” is a genetic group of disorders characterized by an impaired immune system, causing newborns to develop serious and recurrent infections that typically result in early death within the first year of life. Screening, diagnosis, and ultimately, treatment can cure a baby born with this disease. To date, over 40 million newborns have been screened in the United States alone, and countless lives have been saved as a result of this screening implementation.

    I sincerely hope you will put this request at the forefront of your public health agenda and incorporate SCID into the country’s newborn screening program. (COUNTRY) could be a leader in public health by taking this request on and encouraging action.  With (COUNTRY)’s implementation, we can work toward the goal of screening all babies worldwide for SCID. 

    Thank you for your consideration.

    With hope for the cause,


  • SCID Screening in Australia

    As we continue to spread awareness for Primary Immunodeficiency and newborn screening for SCID across the world, we are thrilled to share the news that earlier this year, the Australian government recommended adding SCID to State and Territory newborn screening programs.

    This announcement is a perfect example of using your voice to Do Something by speaking up and encouraging action. Joh Kelly lost her 5-month-old son Hunter to SCID because newborn screening for SCID wasn’t included in the program at the time. Like so many other parents, Joh could not let her son’s life be in vain, so she pioneered an application for SCID to be added to the newborn screening panel in Australia.

    Joh’s application was supported by AusPIPS Inc. and the Jeffrey Modell Center for Primary Immunodeficiencies in Melbourne. This is why the JMCN is so critical for patients living with PI across the globe: the network offers patients direct access to expert immunologists and allows us to confirm valuable genetic diagnostic information for each patient. The JMCN has enabled the Foundation to pursue its goals, raise awareness, and in turn, reduce mortality and morbidity while improving quality of life for as many patients as possible, and even saving a few.

    Early diagnosis is key to providing life-saving treatments to children born with SCID, and this addition to the screening program will save numerous babies born in Australia each year. We won’t stop until every country worldwide is participating in newborn screening for SCID!

  • Caregiver Health - Importance of Newborn Screening

    As parents, we are all too familiar with the uncertainty that comes with a Primary Immunodeficiency diagnosis. There was limited medical knowledge when Jeffrey was diagnosed with hypogammaglobulinemia, and our lives were thrown into turmoil as we searched for answers, information, and clear explanations.

    Today, newborns are tested for SCID and dozens of other disorders within 24 to 48 hours of birth so that any genetic mutations are caught early and can be properly diagnosed and treated accordingly. Time is of the essence when it comes to newborn screening and diagnosis, which is why we lobbied for so long for SCID to be added to the national core screening panel.

    Even though a positive test or diagnosis can be frightening or intimidating, comprehensive knowledge and understanding empowers parents and families to make informed choices for their child’s well-being and health. The medical care team typically explains the newborn screening process prior to birth so that parents and families are informed and know what to expect. Just a few drops of blood can make all the difference in long-term quality of life!

    Another significant benefit of newborn screening is the cost saving benefits to parents and families: screening for SCID saves, on average, hundreds of thousands of unexpected dollars in medical bills and care over time. When we were lobbying for SCID screening, money was an obstacle for many states, but we challenged that high medical bills would be an equally complicated obstacle for families trying to save their child and improve their quality of life.

    Be sure to speak with your medical care team if you have any questions or concerns about newborn screening. Remember, you are always your own best advocate!

  • Newborn Screening Physician Interview - Raz Somech, MD, PhD

    This Newborn Screening Awareness month, we are highlighting key physicians who have helped newborn screening for SCID become a reality across the globe. Today, we’re thrilled to share an interview with Raz Somech, MD, PhD. His efforts were critical in promoting and confirming newborn screening for SCID in Israel.

    Now, five years into Israel’s NBS screening program, over 937,953 newborns have been screened for SCID and no cases have gone undetected thanks to newborn screening. Diagnosed SCID patients have been properly assessed, diagnosed, and treated accordingly, resulting in a 91% survival rate. These incredible results would not be possible without the efforts and care of physicians like Dr. Somech! We hope you enjoy our interview and gain some insights about the value of newborn screening worldwide.

    1. Why is newborn screening so important for the Primary Immunodeficiency community?
      There is nothing more valuable than saving a baby's life. The ability to identify a sick baby even before the appearance of his/her clinical symptoms is extremely important. Certainly, when it comes to life-threatening diseases such as SCID. Early detection leads to early treatment and the highest chance of success and have favorable outcome.

    1. What do you wish more parents and families knew about newborn screening?
      The purpose of SCID screening is to identify a disease that can be successfully treated if diagnosed in time. Those positive screening results should be referred to a center that specializes in the field to perform a thorough investigation in order to verify the screening results. Until the investigation is complete, caution must be taken in all matters related to hygiene and preventing infections.

    1. What advice and helpful tools would you give to those countries still not screening?
      The SCID screening saves lives and saves financial expenses. Newborn screening tests have revolutionized everything related to the identification and treatment of babies with certain diseases. The impact on the individual patient, the family and society as a whole is enormous. The strength of a healthy society is measured, in part, by the ability to treat the individual patient, even if s/he has a rare disease. In countries where there is a high rate of consanguineous marriages and therefore also a high rate of genetic diseases of the immune system, the screening is highly recommended.

    1. Do you anticipate any changes to the way newborn screening is conducted in the future?
      I hope that additional diseases of the immune system will be added to the panel of screening tests and thus lead to quick and successful treatment for many babies. I predict that in the coming years screening will move from specific molecular tests to broad genetic evaluations that will enable early detection of many more diseases.

    1. How has the Foundation impacted your work with newborn screening?
      The JMF led by Fred and Vicki Modell pioneered the field. They understood the effect of screening on the individual patient and the contribution to society. The Foundation led the efforts of screening for SCID throughout the years, and gave professional and explanatory support in everything. They created a positive media response for the introduction of SCID screening and in saving the lives of hundreds of babies who were born without an immune system. Thanks to the Foundation, their lives were saved.

    1. Is there any advice you’d like to offer patients and families who test positive for SCID?
      Be optimistic, trust your doctors, stick to their advice, and understand that early diagnosis is important and may lead to better treatment outcomes. We have the capability to offer affected babies a fair chance to live a normal life.

      Pictured below: Vicki and Fred Modell alongside Raz Somech, MD, PhD.

  • Newborn Screening – Current and Future Outlook

    Newborn screening saves lives—it’s that simple. To date, over 40 million babies have been screened in the United States alone. Over the years, we’ve continued to expand our efforts globally to identify, and possibly even cure, as many newborns as possible.

    Wisconsin was an early adapter of newborn testing, and in 2007, we agreed to fund half of the pilot program to screen for SCID in the state. The pilot began in January 2008 and tested 10,000 newborns over the course of the program. During this pilot, one child with SCID was identified and cured, motivating us to continue working state by state until all 50 states, Washington DC, Puerto Rico, and the Navajo Nation implemented newborn screening for SCID in 2018.

    In addition to the United States, the following countries are currently conducting newborn screening for SCID: Brazil, Denmark, Germany, Iceland, Israel, Lebanon, New Zealand, the Netherlands, Norway, Singapore, Sweden, Switzerland, and Taiwan.  Belgium intends to add SCID to their newborn screening panel in late 2022 or early 2023.

    Pilots are underway in Canada, Chile, China, Finland, France, Ireland, Italy, Japan, Poland, Saudi Arabia, South Korea, Spain, Turkey, United Kingdom, and Vietnam. 

    See if your country participates in a newborn screening program here: https://www.info4pi.org/town-hall/newborn-screening. The best way to Do Something is to use your voice – if your country doesn’t participate in newborn screening yet, speak up to encourage action!

  • Newborn Screening - Treatment Overview

    Since 1987, the mission of the Foundation has been earliest possible diagnosis. Primary Immunodeficiency is a genetic condition that is chronic, serious, and sometimes life-threatening if not detected early on. Early diagnosis as a result of newborn screening helps to save lives! Today, we want to share more about the newborn screening process so that families know what to expect.

    When a baby is 24-48 hours old, a blood sample is taken from the heel and sent to a state laboratory to be tested against a state-specific list of disorders in addition to the national core panel of 31 congenital disorders. We lobbied to add SCID to the national core panel for years, and finally, in 2010, the US Secretary of Health and Human Services recommended SCID to the National Core Panel.

    If necessary, based on the results of the screening, parents and their baby will be referred to a specialist(s) for possible further testing and to coordinate an appropriate treatment plan. Nearly 4 million newborns are screened annually in the US alone.

    The key to our mission of earliest possible diagnosis is to ensure proper treatment after newborn screening. Learn more about the core panel here: https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp.

  • Newborn Screening Awareness Month – Our History

    September is Newborn Screening Awareness month! We’re looking forward to sharing more about our lobbying efforts and advocacy this month, starting with our history and involvement in securing Newborn Screening in all 50 states and beyond.

    For seven long years, we lobbied in Washington to encourage public awareness for PI and add SCID to the Newborn Screening panel. Without diagnosis, life expectancy for SCID patients is only one year. There was an inexpensive and efficient test to diagnose, treat, and possibly save these babies who would otherwise likely die before their first birthday. We were unwilling to let babies continue to die from a treatable disease.

    We appeared before the US Congress to advocate for Newborn Screening for SCID for years and years. We weren’t satisfied with the status quo! We were determined to help the next family and wanted to help educate the world.

    In 2007, we agreed to share the costs of a pilot program to screen newborns for SCID along with the state of Wisconsin. The pilot program began in January 2008 and tested 10,000 newborns over the course of the program. Based on the success of the pilot, Wisconsin officially adopted SCID for Newborn Screening. But that was just the beginning.

    We kept sharing our story, speaking to families, and lobbying whenever we could. In 2010, the US Secretary of Health and Human Services recommended SCID to the National Core Panel. It would be the first addition in twelve years! We were thrilled, until we found out that this was just a recommendation—we would still need to convince each state to add SCID to their Newborn Screening panels.

    So, we kept pushing. Finally, in 2018, Newborn Screening for SCID was implemented in all 50 states, Washington DC, Puerto Rico, and the Navajo Nation. Today, nearly 40 million babies have been screened in the United States.

    In addition to the United States, several countries are conducting population screening for SCID, including Brazil, Denmark, Germany, Iceland, Israel, Lebanon, New Zealand, the Netherlands, Norway, Singapore, Sweden, Switzerland, and Taiwan.  Belgium is scheduled to add SCID to the panel for population screening, and pilots are underway in Canada, Chile, China, Finland, France, Ireland, Italy, Japan, Poland, Saudi Arabia, South Korea, Spain, Turkey, United Kingdom, and Vietnam. 

    Stay tuned this month for more updates and stories about our Newborn Screening efforts worldwide!

    Pictured below:
    Dawson Bornheimer, the first newborn to test positive for SCID during our Wisconsin pilot program in 2008. Today, he is cured and playing high school football!


  • Save the Date – International Plasma Awareness Week

    October 3rd - 7th, 2022 is International Plasma Awareness Week! Please join the Jeffrey Modell Foundation in our efforts to screen potential plasma donors and support confirmed donors. Head to your closest plasma donation center, which you can find here: https://www.donatingplasma.org/donation/find-a-donor-center.

    There is currently an increased need for plasma, and you can be the solution! Did you know that it takes 130 plasma donations to treat just one person with Primary Immunodeficiency for a year? Not only will you give the gift of life with your donation, but you’ll also be compensated for your time.

    New donors will present their ID and complete a short questionnaire before participating in a brief health screening to confirm donation eligibility. Once your health screening is complete, you’ll sit back and relax for about 90 minutes while your plasma is collected.

    Plasma can’t be made artificially in a lab—it can only be gathered from healthy donors. Together we will raise awareness about the importance of plasma for people living with PI and save lives. Will you join us and give the gift of life?

  • Updates from the Lab – August 2022

    Our research programs continue to support innovative breakthroughs and discoveries! Read on for more Updates from the Lab.

    Breaking News
    On October 1, 2022, a new diagnosis code for APDS, D81.82, will be available. APDS, activated PI3K delta syndrome, is a rare and progressive primary immunodeficiency, first characterized in 2013. 

    Multiple patient advocacy groups, disease foundations, and specialty society groups, along with Pharming Group N.V, were involved in supporting the new diagnosis code. Diagnosis codes allow greater specificity for providers and payers to gather information about patients’ conditions and treatments.

    For more information about APDS, please visit https://allaboutapds.com/.

    Jeffrey’s Insights: Gene Sequencing Program
    As of July 31st, 2022:

    • Over 2,600 patients tested
    • US – 25%
    • INT – 75%
    • Over 17,000 variants identified

    Translational Research Program
    Consideration for Cycle 10 of our Translational Research Program is underway. Grants will be awarded by November 18, 2022.

    Specific Defect
    Awards are granted on a rolling basis throughout the year ($1,782,136 total to-date). There are currently 39 Specific Defect Research Grants in progress.

    Awards are granted on a rolling basis throughout the year. There have been 25 awards made to date ($980,057 total).

  • What are…T Cells vs. B Cells?

    Our body’s number one defense from infections, germs, and bacteria is our immune system. Our immune system works 24 hours a day, 7 days a week to keep us healthy! However, some people are born with immune systems that don’t function as well as they should—this may be due to Primary Immunodeficiency.

    One of the main components of our immune system is bone marrow, which produces red and white blood cells, also known as lymphocytes. For people living with Primary Immunodeficiency, a defect in T cells and B cells can disrupt the normal function of their immune system. But what are these two types of cells, and why are they so important in keeping us healthy and strong?

    T cells are the ultimate guardians of our immune system! We know that people living with PI are more likely to suffer from frequent infections, and T cells play a key role in boosting the immune system or silence it when it’s under attack. There are many types of T cells, and they work together to look for potentially harmful invaders and prevent further infection.

    B cells are another type of white blood cell that produce antibodies.  These antibodies are an essential part of our immune system, especially for people living with PI—that’s because the B cell can turn into a plasma cell. Plasma can sometimes mean the difference between life and death for people living with PI!

    Remember, it takes over 130 plasma donations to treat just ONE patient with PI. Sign up to give the gift of life at a plasma donation center near you: https://www.donatingplasma.org/donation/find-a-donor-center.

  • JMF Infusion Centers

    Our global network is made up of hundreds of expert researchers and physicians who work tirelessly to find better treatments and possible cures for PI. Did you know that there are two Jeffrey Modell Foundation Infusion Centers where patients can go to receive their Ig infusions?

    The first JMF Infusion Center was established in Barcelona, Spain in 2020. Soon thereafter, in 2021, a second JMF Infusion Center opened in Lima, Peru where hundreds of patients have been treated to-date. These world-class infusion centers are led by expert physicians in select hospitals to improve infusion delivery, which is a critical part of the PI patient experience.

    We are endlessly proud of the expert physicians and nurses who provide care and administer treatments to PI patients around the world. Our journey is far from over!

  • JMF Programs - All About KIDS Day

    When we started the Foundation, one of our goals was to make sure that no other child living with Primary Immunodeficiency would have to be alone. Inspired by Jeffrey, we created Kids with Immune DeficiencieS (KIDS) Day in 1988 to provide children living with PI a fun-filled day away from hospitals and doctor’s offices to meet each other, connect, and develop friendships in a casual environment.  The program was started for our JMF Kids, but now we’re thrilled to include patients from ages 0-102!

    KIDS Day is provided at no cost to patients and families. This community event is a great way to meet other parents who are managing a PI diagnosis and build your support network. It’s our hope that these events provide some light and fun for our JMF community members who miss days of their normal life stuck in doctor’s offices or sick at home.

    There have been over 600 KIDS Days since we started the program, and we are thrilled that in-person events are once again becoming a possibility. Past virtual events have included an educational component with local expert immunologists and nurses followed by a fun event for patients to participate in. We’ve funded personal tours of zoos, visits to museums, baseball games, movie nights, and more.

    Ask your immunologist if they participate in KIDS Day to learn more!

  • Do Something on World Humanitarian Day

    Today is World Humanitarian Day! The aim of World Humanitarian Day is to celebrate the people who dedicate their lives to helping people and raise awareness of humanitarian assistance on a global scale. This year’s campaign theme is “It Takes a Village.”

    When we started the Foundation in 1987, our goal was to ensure that stories like Jeffrey’s would become rare. Since then, thousands of children with life-threatening conditions have been screened, diagnosed, treated, and sometimes, cured! Thirty-five years later, we are more committed than ever to our mission of hope, advocacy, and action to save more precious lives.

    Today, and every day, you can support the work of the Foundation in the following ways:

    • Sign up to be a plasma donor – plasma saves lives!
    • Share your story and experience with PI to encourage public awareness
    • Donate to our cause to support innovative research grants and discoveries
    • Use your voice – if your country doesn’t participate in Newborn Screening yet, speak up to encourage action!

    We will continue to support the brilliant and compassionate doctors, the tender, loving expert nurses, the dedicated researchers, the brave and courageous families, our supportive donors, the quiet, unsung heroes working days and nights in their labs, and most of all, the patients who inspire us, propel us, and compel us to continue on our incredible journey.

  • Bone Marrow Transplant - Treatment Overview

    For patients living with certain Primary Immunodeficiencies, a bone marrow transplant may be the appropriate solution for treatment.  A bone marrow transplant is often suggested for some of the most common PIs including Severe Combined Immunodeficiency (SCID), Wiskott-Aldrich Syndrome (WAS), and Chronic Granulomatous Disease (CGD).

    Bone marrow is the soft tissue inside our bones that houses our immune cells. Because PI is a result of a non-functioning immune system, new immune cells are used to rebuild and replace the damaged or broken-down defense network. The specific type of transplant that PI patients typically undergo is known as an allogenic stem cell transplant, which means the patient is matched with a relative or unrelated donor whose cells are genetically compatible.

    Before the transplant, patients typically undergo chemotherapy or radiation to get rid of their original stem cells to prepare their body for the donor cells. When a transplant is successful, the body starts to build a new, healthy immune system from the donated cells or cord blood.

    In certain countries, appropriate care for PI and some treatment options can be hard to access. This is why we are so proud of our “Roots & Wings” program, which provides travel and related support to children and their families who have been identified with a potentially life-threatening PI that requires lifesaving medical care far away from home. The program gives children and their families a second chance at life after transplant! Learn more about our “Roots & Wings” program in the Airport section of our website.

  • National Sons and Daughter’s Day – Jeffrey’s Legacy

    Jeffrey came into our lives very wanted and very cherished. His first ten months of life were peaceful and happy. He was a beautiful baby! But just before his first birthday, Jeffrey was diagnosed with hypogammaglobulinemia. We were devastated, and in an instant, our world was shattered.

    Courage and humor were Jeffrey’s great assets. His determination was inspiring! Jeffrey survived and bounced back many, many times. Sadly, one final life-threatening bout of pneumonia took his precious life in 1986.

    We knew we couldn’t let his life be in vain. In the spirit of his optimism and courage, we created the Jeffrey Modell Foundation - not in memory of his death, but in celebration of his life, and to give life.

    We are proud to support sons and daughters worldwide through our Roots & Wings program, World Immunodeficiency Network, KIDS Days, ongoing advocacy efforts, and “Jeffrey’s Insights” genetic sequencing program. Thousands of newborn babies and young children with life-threatening conditions have been screened, diagnosed, transplanted, and cured!

    Our efforts are motivated by the love and passion that Jeffrey’s legacy has inspired, and continues to encourage, thirty-five extraordinary years later. To all of the sons and daughters living with PI, know that we are here to support you, advocate for you, and ultimately, find cures for you.

  • What Is a Chronic Disease?

    Did you know that six in ten American adults have a chronic disease? Chronic diseases are more common than you might think, particularly invisible diseases like Primary Immunodeficiency.

    A chronic disease is a persistent or long-lasting health condition that develops over an extended period of time. According to the CDC, a chronic disease is a “condition that lasts 1 year or more and requires ongoing medical attention or limits activities or daily living or both.”

    It’s important to get a diagnosis as early as possible to prevent infections, serious illness, and other potentially significant life interruptions or related health conditions. Be sure to learn your family’s history of chronic disease! This knowledge will help to confirm any possible disease diagnosis and can indicate other potential disease warning signs.

    Thanks to the incredible scientific discoveries that have progressed over the past thirty-five years of the Foundation’s operation, patients living with PI who receive regular treatments are more likely to gain and maintain control of their lives, participate more regularly in work, school, family, and other social activities.

    Want to learn more about the 10 Warning Signs of PI? Find them in more than 50 languages on our website: https://www.info4pi.org/library/educational-materials/10-warning-signs.

  • Get to Know JMF - Jessica

    Today we'd like to introduce you to our Scientific Director, Jessica, in the newest installment of our "Get to Know JMF" series! She oversees all things "science" at the Foundation: 

    Why did you decide to work at JMF?
    I accepted my position at JMF in March of 2014 because it perfectly blended two of my passions: science and helping others. JMF’s ultimate mission of improving and saving lives makes me proud of the work we do here every day.     

    Briefly describe your role at JMF.
    I am the Scientific Director at JMF, which means I oversee all things “science”. This includes global coordination of our no-cost genetic sequencing program, research programs, the JMF Physician Survey, and newborn screening; grant writing; publication of manuscripts; and any additional projects, programs, or tasks that arise.

    What would you like people to know about your work?
    My work, and that of my colleagues here at JMF, is done with passion, intention, and a sense of urgency, because there are literally lives at stake, and we take that very seriously. There is never a dull day here at JMF, but we wouldn’t have it any other way. But don’t worry…we manage to have some fun along the way!

    What inspires you?
    Kindness with no conditions. Resilience in the face of the seemingly impossible. Creating change to improve the lives of others.      

    What three words would you choose to describe yourself?
    Driven, Compassionate, Trustworthy.

    What is your favorite JMF memory?
    After nearly nine years here at JMF, I have many, so choosing one is quite the challenge. One of my favorite memories that stands out is attending a meeting at the WHO headquarters in Geneva, Switzerland, regarding the global polio eradication initiative. JMF has played an important role in this initiative with the utilization of the Jeffrey Modell Centers Network (JMCN) to determine the prevalence of poliovirus excretion in immunodeficient individuals. It was an honor to be present at such a meaningful meeting of the minds!

  • Invisible Illness

    On the outside, Jeffrey was so beautiful and looked so normal. But inside, his immune system, his lifeline, was seriously flawed.

    Primary Immunodeficiency is known as an invisible illness—most patients “don’t look sick,” but they may be suffering from “invisible” internal symptoms that affect all ages. We’ve heard time and time again from our patient community that because they don’t exhibit any obvious external symptoms, their friends and family don’t understand the full extent of their disease.

    Understandably, it can be extremely frustrating if support from your network is not as forthcoming as you need it to be. As a patient, know that you must keep persevering and stay focused and positive to seek out answers or a proper diagnosis. You are your own best advocate!

    If you know someone who is living with PI, respect their boundaries and take time to learn about their illness so you can better understand what they’re going through and offer empathy and help. Ask questions if you’re curious! The more people who are educated about PI will help to lead to better diagnosis and treatment options for those who might not know they’re living with an invisible illness.

    No matter their age, a person is not defined by their invisible illness or disease diagnosis.

  • July 2022 - Updates from the Lab

    Our research efforts continue to reach new heights! This past month we received the highest number of tests for our “Jeffrey’s Insights” gene sequencing program, as well as our seventh consecutive four-star rating from leading non-profit evaluator, Charity Navigator. Read on for more Updates from the Lab!

    Jeffrey’s Insights: Gene Sequencing Program
    As of June 30th, 2022:

    • Total of 2,526 patients tested (US - 625, INT – 1,901)
    • Total variants identified – 16,924

    Translational Research Program
    Cycle 10 of our Translational Research Program continues to move forward. We invited 16 investigators to submit full applications in early July, and consideration is now underway. Grants will be awarded by November 18, 2022.

    Specific Defect
    There are currently 39 Specific Defect Research Grants in progress. Awards are granted on a rolling basis throughout the year ($1,782,136 total to-date).

    There have been 25 awards made to date ($980,057 total). Awards are granted on a rolling basis throughout the year.

    Breaking News 

    1. The Jeffrey Modell Foundation received our seventh consecutive Four-Star Rating from America’s leading non-profit evaluator, Charity Navigator! This is the highest possible rating from Charity Navigator. The four-star rating signifies that the Jeffrey Modell Foundation demonstrates strong financial health, a commitment to accountability and transparency, and adheres to sector best practices to execute our mission in a financially efficient way. Only 10% of the charities evaluated have received at least 7 consecutive 4-star evaluations, indicating that the Jeffrey Modell Foundation outperforms most other charities in America.

    2. The Australian government has recommended adding Severe Combined Immunodeficiency (SCID) to State and Territory newborn screening programs. Early diagnosis is key to providing life-saving treatments to children born with SCID.

    The application was supported by AusPIPS Inc. and the JMF Center for Primary Immunodeficiencies Melbourne. This announcement will save numerous babies in Australia!

  • Top 10 Most Common PIs

    Earlier this year, we published a new manuscript highlighting the growth and diagnosis and treatment of PI within the JMCN. Over the years we’ve developed a survey to send to members of the Jeffrey Modell Centers Network (JMCN) to describe their patient population and better understand diagnosis, treatment, demographics, and most prevalent types of PI seen and diagnosed.

    Based on the survey results, the ten most common PIs have remained consistent over the past eight years, with only minor differences. The most prevalent PI identified globally was Common Variable Immunodeficiency (CVID). Here are the top ten most commonly identified PIs within the JMCN:

    1. Common Variable Immunodeficiency (CVID)
    2. Selective IgA deficiency
    3. Isolated IgG subclass deficiency
    4. TBX1 (DiGeorge, Chromosome 22q11.2 Deletion Syndrome), AD
    5. Transient hypogammaglobulinemia of Infancy
    6. Specific antibody deficiency (normal Ig and B cells)
    7. ATM (Ataxia-telangiectasia), AR
    8. BTK (BTK deficiency, XLA) XL
    9. MEFV (Familial Mediterranean fever), AD
    10. TNFRSF13B (TACI deficiency), AR or AD


    Visit the Encyclopedia page of our website to find detailed definitions about specific PIs. Interested in reading more about our survey results? You can read the full article and additional findings here: https://aacijournal.biomedcentral.com/articles/10.1186/s13223-022-00662-6.

  • Caregiver Health – Resources and Support

    When Jeffrey experienced the recurring infections typical of Primary Immunodeficiency, there were so many lonely nights in the hospital. It was heartbreaking to hear our child ask us to Do Something! when we were doing everything we could to keep him healthy and well.

    Being a caregiver, whether for a child or adult, is a long-term commitment and can be overwhelming at times. It’s important to find ways to adapt to changes in your life and ask for help when you need it. Call on friends, family members, and stay connected to your community. Here are our top tips for where to find caregiver resources and support:

    Local Organizations and Support Groups
    It may be beneficial to step outside your regular community to gain new perspectives. Search out local organizations or support groups to connect with other likeminded people. These groups may encourage you to develop new ways to manage stress and frustration, prevent you from feeling isolated, and help you to find additional valuable contacts you may not know about.

    Social Media
    Social media is a great place to connect and communicate with other caregivers. You might find it helpful and eye-opening to share experiences, suggestions, and accept support from others in similar positions. Try searching Facebook for caregiver support groups where people share skills and experiences that they’ve gained overtime. You may learn something new!

    Blogs and Online Resources
    Blogs (like ours!) offer valuable information, recommendations, and guidance based on experience for caregivers and patients alike. There are many online resources available to help to educate your community about your patient’s disease, quality of life, expected longevity, and more. Be sure to pass along your knowledge by sharing your own story and resources you find helpful with other caregivers!

  • All About Infusions – What is Ig Therapy?

    When Jeffrey was around ten years old, he was started on intravenous gamma globulin (IVIg) therapy to replace the missing antibodies his body couldn’t produce. These treatments sometimes improved his life for weeks at a time!

    Today, we want to share more about the infusion process (Ig therapy) so that our JMF community better understands the importance of plasma donation. For patients living with Primary Immunodeficiency, donated plasma can mean the difference between life and death.

    Ig infusions are made from donated plasma. We know that plasma is the liquid part of your blood that contains essential antibodies to protect PI patients from harmful infections. These vulnerable patients rely on regular plasma donations to create their weekly or monthly Ig infusions to help their immune systems stay strong and healthy.

    There are two types of Ig therapy: IVIg and SCIg. During IVIg, a healthcare professional will administer the Ig through an Iv inserted in a vein every three to four weeks. This type of infusion can take up to 8 hours, whereas plasma donation takes just about 90 minutes. During SCIg, the Ig is administered subcutaneously using a fine needle by the patient (or parent/guardian) at home every week.

    Although these treatments can be time consuming and physically exhausting, infusions offer PI patients the chance to enjoy a relatively normal and improved quality of life. To pass the time during infusion, some patients read, work on homework or crosswords, draw, listen to music or podcasts, rest, or watch TV shows and movies. Remember, your plasma donation today can save a life tomorrow!

    Please consider signing up to be a plasma donor to keep PI patients healthy and strong! To find a plasma donation center near you, visit: https://www.donatingplasma.org/donation/find-a-donor-center.

  • Guest Post: Spotlight on James Rukin

    Today we are delighted to share our recent spotlight interview with James Rukin. James was diagnosed with XLA as a young child and is now a thriving 14-year-old. James is a wonderful role model for our patient community. He is an inspiration for how to live life to the fullest; never dwelling on his chronic disorder. We hope you learn something new and feel encouraged after reading James’ positive words!

    What inspires you?
    In general, I am inspired by people who work hard to achieve their goals despite the obstacles in their path. I am also motivated by selfless individuals who take their own time to improve other people’s lives.

    We know you’re a big sports player. What is your favorite sport to play? To watch?
    I love sports – watching and especially playing. I have been involved in sports my whole life and my favorites are lacrosse, soccer, golf, football, and basketball. And when I can’t be playing, I love to watch NY sports teams (Giants, Mets, Rangers, and Knicks). Lately, my favorite sport to watch has been college lacrosse! 

    Outside of school and sports, what hobbies do you enjoy?
    I love hanging out with my family whether we are cooking, grilling, traveling, swimming, or looking for an adventure.  I also love to play board games, video games, and work out.

    What is your favorite childhood memory?
    One of my early memories is from one of my first IVIG infusions at Mount Sinai when I was around three years old. I was really scared because my mom had put numbing cream on my arms, and I was in a huge hospital with a lot of strangers. Shortly after I sat in the infusion chair, the entire staff in the infusion department surrounded me and started to sing “My Favorite Things” from The Sound of Music. They made me laugh since they were having so much fun and that distracted and consoled me. I was so grateful that they were willing to act silly and step outside of themselves just to make me feel more comfortable. Even a little gesture can make a big impact on someone else’s life.

    What do you wish more people knew about living with a chronic disease? Do you have any advice you’d like to share?
    When I was younger, I was terrified of my infusions. According to my parents, I was extremely strong, and for three or four years my father had to leave work every month to physically hold me down before I was stuck with the IV needle. I remember screaming and squirming to avoid the stick. I always wanted to watch the procedure and while that was important to me, it probably exacerbated my anxiety.  I didn’t understand how to make myself relax, and everyone was on edge.  But, most of my nurses were great and they utilized innovative techniques to try to alleviate my fear.  One of them brought over an assortment of unique-smelling hand sanitizers, another one would talk to me about her kids, another would bring me candies and small gifts, and another would instruct me to wiggle my toes as the needle went in.  I don’t remember which method worked the best, but what I do know is that after a while I got comfortable with the process and I’m ok with getting the infusions now.  I think it is important for young patients to know that the extreme fear dissipates as they get older--I promise, it gets better! The needle hardly bothers me now. It has become a part of my monthly routine, and it really is not such a big deal anymore!

    Overall, my illness has taught me a lot of things, including the importance of being kind to other people. Since my diagnosis with this challenging illness, my medical team has treated me with such incredible care, kindness, and respect. From an early age, the staff made me feel as safe and comfortable as they could. They also talked directly to me, not just to my parents. This made me feel as though my opinion mattered, and that I was not just a spectator in my own treatment. I hope that I have started to pay those kindnesses forward. While being kind is most important, I also believe that my disease has taught me to appreciate and embrace differences in other people. You never know what someone else is dealing with, but whatever it is, it is usually fascinating. Each of us is unique and individual differences are cool and certainly make the world more interesting. My parents always treated me like I was "normal" and as a result, I really do not think about my immunodeficiency until the day of the infusion. I would like to provide the following bit of advice: try not to dwell too much on your disease. Be smart, but also, live life to the fullest and enjoy all it has to offer.

  • The Importance of Access to Care

    When Jeffrey was young, we travelled all over the world to get answers and meet with the most innovative and well-regarded physicians of the time. We were able to provide him with the best possible care available, but we couldn’t give him his health.

    We know that barriers to care results in a prolonged diagnostic journey, without genetic evaluation, and sometimes, unknown diagnosis. Access to care saves lives! Appropriate access to care improves the chances of earlier and precise diagnosis, quality of life, and communication with expert physicians. For vulnerable patients living with PI, access to quality care may provide a better chance at survival and more long-term care options.

    This is why the JMCN is so critical for patients living with PI across the globe: the network offers patients direct access to expert immunologists and allows us to confirm valuable genetic diagnostic information for each patient. The JMCN has enabled the Foundation to pursue its goals, raise awareness, and in turn, reduce mortality and morbidity while improving quality of life for as many patients as possible. We have seen an increase in both diagnosed and treated patients across the globe, advocated for greater access to treatments, and encouraged the implementation of standard of care and best practices.

    Our journey is far from over: we have miles to go, more paths to pave, more dreams to dream, and more stars to reach! It’s our earnest hope that we will Do Something to ensure that as many suspected and diagnosed PI patients as possible will have unrestricted access to proper diagnosis, treatment, and disease management, no matter where they live.

  • "Do Something!” and Share Your Story

    We’ve heard time and time again from our community that people say, “you don’t look sick.” We are committed to sharing Jeffrey’s story with the world to encourage earliest possible diagnosis, and ultimately, cures for PI. One of the best ways to Do Something is to share your own journey with PI!

    There are still so many people around the world who have never heard of PI and don’t know what it’s like to live with or care for someone living with a rare disease. Sharing your experience with PI with friends and family, and even others outside of your community, is a great way to spread awareness, educate, and encourage a better understanding about what you’re living through. Open and honest discussions can make a profound difference and help to expand our global community!

    You might find it helpful or inspiring to connect with other patients on social media, or even find a support group to share experiences—this may be especially beneficial for caregivers. Bringing these conversations outside of your immediate community circle is a great way to provide clarity and spread hope to others while also supporting each other along the way.

    Sharing your story may empower others to find answers, ask questions, and even result in possible diagnosis for some. We can do so much more when our community stands together, united on the path towards finding better treatments and cures for PI!

  • "Roots & Wings" - Pierina Maldonado

    July 2022 – One of the most fulfilling parts of our work at the Foundation is supporting patients and their families through our “Roots & Wings” program. Over the past several years, we’ve formed a special connection with a little girl named Pierina Maldonado. I’m honored to share her “Roots & Wings” story—today she is cured!

    Pierina and her family are from Huancayo, one of the poorest cities in Peru with limited care options for patients living with Primary Immunodeficiency. Pierina was diagnosed with a rare, combined immunodeficiency: Activated-PI3K-Delta Syndrome. When we learned that Pierina’s care would not be feasible in Peru, we knew we had to support this courageous child however we could.

    Pierina is a patient of Dr. Aldave, one of our JMCN experts and an extraordinary physician. Dr. Aldave was aware of a clinical research protocol for the hematopoietic stem cell transplantation (HSCT) that Pierina would need at the National Institutes of Health in Bethesda, Maryland. And so, arrangements were made for Pierina and her mother to travel from Lima to the NIH facilities in 2017 for her initial evaluation by Dr. Gulbu Uzel and Dr. Jennifer Kanakry. Unfortunately, during her evaluation, her doctors determined that her liver was not healthy enough to move forward with the HSCT procedure. They started her on a recovery medication to improve her health and confirmed a follow-up visit for 2019.

    After two years on the medication and healing at home, Pierina and her mother once again traveled to the NIH to undergo follow-up tests and further evaluations by Drs. Uzel and Kanakry. They ended up staying there for several months.

    At last, in 2020, Pierina was healthy enough to receive her HSCT thanks to the remarkable care and compassion of the physicians at the NIH. In late January, Pierina and her mother arrived at the NIH for her transplant and follow-up evaluations. They were due to stay for about seven months, and if all went well, Pierina would be able to return home cured!

    With great relief and excitement, we learned that the transplant had been successful, and Pierina would be able to return home—her health had been restored!

    Since then, Pierina and her mother have travelled back to the NIH for two follow-up appointments and evaluations. She has gained height and weight, and is doing extremely well. Pierina is happy, healthy, and enjoying her childhood. What more could we hope for?

    As ever, we are in awe of the medical care, support, and guidance from all of the physicians involved in securing Pierina’s care and ensuring her recovery continues to be successful. It brings us unbelievable joy to see her thriving and living life to fullest. Pierina was even able to travel to Machu Picchu this year! We are so grateful to have the opportunity to support Pierina’s care, and look forward to following her journey as she continues to grow and heal in the years to come.

  • Antibiotics - Treatment Overview

    Not all Primary Immunodeficiencies can be treated in the same way. Today, we’re continuing our treatment overview series by explaining how antibiotics are used to manage and treat patients young and old.

    Jeffrey had the recurring infections typical of Primary Immunodeficiency, and our lives became a whirlwind of hospitals and doctor’s offices. Every succeeding illness disrupted his young life. There were so many lonely nights in the hospital, and so many lonely days when he was sick at home.

    Because PI patients already have a weak immune system, it’s essential to manage infections as soon as they start and take action to prevent future infections. Antibiotics are used to prevent or clear bacterial infections and will be appropriately prescribed by your physician. If you don’t notice any change or progress, you may need a higher dose or longer course of antibiotics. Be sure to always stay in touch with your physician and ask questions! 

    Preventing future infections is just as important as treating current infections—boosting the immune system is key for promoting long-term survival and quality of life. Your physician might prescribe long-term, low-dose antibiotics to prevent possible respiratory infections and organ damage with the goal of increasing quality of life.

    More than thirty years after we started the Foundation, we’re still dedicated to our mission of hope, advocacy, and action to achieve early diagnosis and meaningful treatments for all patients living with Primary Immunodeficiency. Stay tuned next month for another treatment overview!

  • JMF Programs: All About c.h.i.l.d.r.e.n!

    Jeffrey sent us out alone on our journey in 1987, and since then, we have circled the globe. However, there is one constant no matter where we are: children and adults suffering from chronic, recurring infections due to an underlying Primary Immunodeficiency, undiagnosed. Their illnesses interrupt their activities, detour their plans, and shatter their dreams.

    Supporting new and ongoing research for Primary Immunodeficiencies has always been central to our mission—we want all patients to know that hope is possible thanks to the brilliance, resolve, and dedication of the researchers within the JMCN. Today we’re sharing more about one of our signature research programs, c.h.i.l.d.r.e.n!  

    child health initiative to lessen disease through research and education now! (c.h.i.l.d.r.e.n!) was developed to support our mission through clinical and basic research, and aims to alleviate disease, seek cures, and ultimately improve the quality of life of children living with PI around the world. 

    We review innovative applications for this grant program on a rolling basis from investigators researching immunological disorders, infectious disease, and initiatives to decrease infant mortality. We especially encourage consideration of healthcare disparities (especially in developing countries) through education, testing, diagnosis, and treatment.

    Supporting young researchers pursuing novel clinical strategies to detect and treat PI diseases is essential to forward our field and spark new areas of development and progress. It’s our hope that through this grant program, we will continue to support the development of new platforms for diagnostics, technology, and promote continuing medical education-focused initiatives.

    Interested in applying for the c.h.i.l.d.r.e.n! grant? Download the application on our website and learn more here: http://www.info4pi.org/medical/research-grants/childrenr.

  • Get to Know JMF - Yolanda

    Today, we’re excited to introduce our community to Yolanda, our fabulous receptionist, in our “Get to Know JMF” series:

    Why did you decide to work at JMF?
    I was very excited when I was presented with the opportunity to work at the Jeffrey Modell Foundation. Although I’d never heard of PI before in my life, the Foundation’s work was very interesting to me. I remember reading a quote by Emily Dickinson on the Foundation’s website that really tugged at my heartstrings:

    If I can stop one heart from breaking
    I shall not live in vain,
    If I can ease one life the aching,
    Or cool one pain,
    Or help one fainting robin unto his nest again,
    I shall not live in vain.” 

    I felt that this was a place that truly cares about children and humanity… making sure that every child, regardless of race, creed, or color would have a chance at LIFE!

    Briefly describe your role at JMF.
    I’m the receptionist at JMF. I want each person who enters our office to feel welcome, warmed, and wanted. Whenever anyone walks through our door or calls on the telephone, I try to always greet them in a friendly manner. I order supplies and try my best to help and support everyone. I am the eldest in the company and I feel like the protector of the office!

    What would you like people to know about your work?
    I do my work from the heart, and I always do my very best!

    What inspires you?
    My team inspires me! They are the hardest working people in the world. They are absolutely BRILLIANT at what they do. The children with PI also inspire me every day: they may not always feel their best, but they are strong in spirit, and you’d never know they’re sick. Our JMF kids are always smiling and happy! They remind me that I really shouldn’t have anything to complain about when they’re fighting for their health.

    What three words would you choose to describe yourself?
    Kind, Loyal, and Consistent.

    What is your favorite JMF memory?
    I love thinking about Jeffrey doing his JAM Talks. When I first heard them, I knew right away that he was a young man with a sense of humor and loads of personality.

  • Our Global Reach - JMF Around the World

    We couldn’t let Jeffrey’s life be in vain; we knew we had to Do Something in celebration of his life, to give life. In the spirit of his optimism and courage, we created the Jeffrey Modell Foundation in 1987.

    But who had ever heard of Primary Immunodeficiency? To meet the rising need for education and public awareness for PI, we established the Jeffrey Modell Centers Network, which continue to expand year after year. We have witnessed more scientific discoveries and developments than we could have ever imagined over the past twenty years of the network’s global operation!

    At the time of our first JMCN publication in 2011, our network consisted of 490 physicians at 100 centers in 64 countries across 6 continents, and 79,764 patients were being followed. Today, the JMCN includes 918 physicians at 405 academic institutions in 320 cities and 87 countries, spanning across 6 continents. Even more remarkably, the number of patients being followed in our database has surpassed 285,000! We are changing the future of PI, even if it’s just one patient at a time.

    The substantial growth and meaningful work we've seen is made possible by the JMCN physicians and researchers who are devoted to our PI community around the world. Through education, public awareness, networking, newborn screening, and genetic sequencing, we’ve been able to help children and adults living with PI across 6 continents for thirty-five years. Some of these patients may have gone undiagnosed without the tremendous support of the JMCN members who work tirelessly for their patients. Without proper and earliest possible diagnosis, many patients would otherwise experience a lifetime of chronic illness, permanent organ damage, or even death. We couldn’t save our beloved Jeffrey because science hadn’t caught up to him, but it’s our earnest hope that we may continue to help or save the next Jeffrey through our global network of experts. 

    Knowing that we are Doing Something to change the lives and futures of PI patients for the better is the driving force behind our work. We’ve heard from researchers and physicians from across the globe, from Africa to Greece, from Brazil to Sweden, and beyond in support of our most recent publishing.

    To read our most recent publication and learn more about our global NBS efforts, click here: https://www.frontiersin.org/articles/10.3389/fimmu.2022.906540/full.

  • Caregiver Health: Finding Positivity

    When we learned about Jeffrey’s hypogammaglobulinemia diagnosis, there were so many anxieties caused by limited medical knowledge at that time. We had everything and lost everything at the same time; we could barely understand the diagnosis ourselves. Every day, we never knew what we’d wake up to. The pain of watching our child suffer and not be able to give him his health was excruciating.

    No parent wants to see their child suffer or not know how to help them. When we started the Foundation, one of our main goals was to create a support network so that patients, their families, and physicians would have access to a built-in community. Today, we are proud to support families worldwide through our programs, research, and funding, in the hope that we can give children for generations to come a brighter, healthier future.

    It's easy to put your child’s health and emotional well-being above your own, especially when faced with a new diagnosis. Remember, it’s essential to manage your own health and well-being so that you can be the best parent and advocate possible. Here are our top tips to find positivity amidst uncertainty:

    Ask for Support
    We know how important it is to establish a support system and ask for help when you need it. Call on friends, family members, and your physician and stay connected to your communities. You might feel like you can do it all, but stress can lead to burnout and other health problems down the line.

    Communicate with Other Caregivers
    We created KIDS Day, a fun-filled day away from hospitals and doctor’s offices where families can meet each other, connect, and develop friendships in a casual environment. KIDS Day is provided at no cost to patients and families. This is a great place to meet other parents who are managing a PI diagnosis and build your support network. Social media is another great place to connect and communicate with other caregivers to share experiences, suggestions, and support.

    Reassure Your Child
    It might be tempting to omit the truth from your child, but it’s important to talk and share a little at a time (in an age-appropriate way) so your child isn’t overwhelmed or frightened by visits to their physician or hospital to receive treatments. I didn’t want Jeffrey to know how scared I was for him. Talk and be honest in an age-appropriate way (share a little at a time). As Jeffrey’s constant companion through the worst times, I bore the brunt of his fear and frustration. Be a good listener and encourage them to ask questions whenever they need reassurance.

    Take One Day at a Time
    Remember, it’s a marathon, not a sprint. There were months when I spent more nights in the hospital with Jeffrey than at home. Focus on self-care so you can be healthy and as strong as you can be—for yourself, for your child, and your community.

    Jeffrey taught us that to succeed in life you need three things: a wishbone, a backbone, and a funny bone. The wishbone is for the ideals, the goals, and the dreams; the backbone is for the fortitude and the courage to pursue them, and the funny bone is for the laughter and tears that are necessary for the little bumps along the road. We learned from an expert, Jeffrey Modell, about how to be a fighter and carry on.

  • Updates from the Lab – June 2022

    The Jeffrey Modell Foundation has seen incredible outcomes so far this year!  We are thrilled to share our first monthly “Updates from the Lab” report with our community. Below are the highlights from June 2022:

    Research Programs
    We’re proud to offer grant opportunities that provide funding to physicians and scientists in the field of Primary Immunodeficiency. These efforts help researchers advance science and save lives!

    Translational Research Program
    Cycle 10 of our Translational Research Program is underway. We received 36 letters of intent and have invited 16 investigators to submit full applications. Full applications must be submitted by July 5, 2022 to be considered. Grants will be awarded by November 18, 2022.

    Specific Defect Research Program
    Currently, there are 39 Specific Defect Research Grants to date. Awards are granted on a rolling basis throughout the year ($1,782,136 total to-date).

    c.h.i.l.d.r.e.n! Research Program
    Awards are granted on a rolling basis throughout the year. There have been 25 awards made to date ($980,057 total).

    Jeffrey’s Insights: Gene Sequencing Program
    As of June 1st, 2022:

    • Total of 2,335 patients tested (593 US; 1,742 INT)
    • 15,270 total variants identified
    • When we started the program, the Invitae PI panel offered included 207 genes, which was expanded to 407 genes, then 429 genes, and now physicians have the option of ordering a 574 gene panel.

    Breaking News

    1. UCLA researchers have developed a base editing approach for patients born with the rare genetic immune disorder CD3 delta severe combined immunodeficiency (CD3 delta SCID). Grace McAuley from the UCLA lab of Dr. Donald Kohn shared preclinical results during a presentation at the American Society of Gene & Cell Therapy’s 2022 Annual Meeting on May 17. If this new therapy is successful in a phase 1 clinical trial, it may be used for a variety of other Primary Immunodeficiencies, opening new doors for treatment. This research was funded by the Jeffrey Modell Foundation. Read the full story here: https://stemcell.ucla.edu/news/ucla-researchers-develop-base-editing-approach-rare-genetic-immune-disorder.
    2. Chiesi Global Rare Diseases announced their support for the Jeffrey Modell Foundation's global genetic sequencing initiative, "Jeffrey's Insights.” The goal of the program is to provide genetic sequencing services for people around the world who are suspected of having PIs, which are genetic defects of the immune system that result in chronic and often life-threatening infections or autoimmunity. Read the full press release here: https://www.prnewswire.com/news-releases/chiesi-global-rare-diseases-announces-support-for-jeffrey-modell-foundations-global-genetic-sequencing-initiative-jeffreys-insights-301558171.html?tc=eml_cleartime.


    1. Our newest published manuscript highlights how critical next generation sequencing is for PI patients. We know that NGS offers a path to hope, understanding, and ultimately relief for patients and families. However, despite the critical need for genetic sequencing, it’s all too often inaccessible to patients due to cost, insurance, access to care, and other limiting obstacles. Barriers to care results in a prolonged diagnosis journey without genetic evaluation, and sometimes, unknown diagnosis.  Read the complete manuscript here: https://www.frontiersin.org/articles/10.3389/fimmu.2022.906540/full.
    2. A new article published in the Journal of Clinical Immunology reports on 47 Brazilian patients who were investigated for SCID between 2009-2020. As of May 2021, São Paulo universally implemented NBS-SCID, and investigators hope that other large cities in Brazil will follow, resulting in earlier diagnosis, and an increased survival rate of SCID patients. Read more here: https://link.springer.com/article/10.1007/s10875-022-01275-9.
  • How JMF Helped: Dawson Bornheimer

    For seven long years, we lobbied in Washington to have SCID added to the Newborn Screening panel. Without diagnosis, life expectancy for SCID patients is only one year. There was an inexpensive and efficient test to diagnose, treat, and possibly save these babies who would otherwise likely die before their first birthday. We were unwilling to let babies continue to die from a treatable disease.

    So, we kept pushing. Wisconsin had been an early adapter of newborn testing, and finally, in 2007, we agreed to fund half of the pilot program to screen for SCID in the state. The pilot program began in January 2008 and tested 10,000 newborns over the course of the program.

    Dawson Bornheimer was the state’s first infant to test positive for SCID on June 12, 2008. Doctors were able to pinpoint the genetic cause of his SCID and determined that he could be treated with an umbilical cord blood transplant. Dawson’s perfect match was located all the way in Germany!

    With a match secured, the transplant was scheduled for September 25, 2008. We were stunned. The procedure that would change Dawson’s life was scheduled to take place on what would have been Jeffrey’s 38th birthday. It was like a rebirth of the next Jeffrey! We were invited to Wisconsin for the procedure and met with doctors and state Newborn Screening officials before meeting with Dawson’s parents.

    Thankfully, after four days in the ICU, Dawson’s tiny body finally started to build a new, healthy immune system from the donated cord blood. Four months later, in January 2009, Dawson returned home, concluding the end of the pilot study. Wisconsin officially adopted SCID for Newborn Screening! We were thrilled, and more committed than ever to find and save the next Jeffreys.

    Finally in 2018, Newborn Screening for SCID was implemented in all 50 states, Washington DC, Puerto Rico, and the Navajo Nation. Dawson made history as the first baby with SCID cured because of Newborn Screening. Thanks to his successful diagnosis and subsequent treatment, so many precious lives have been saved. Today, over 34 million babies (and counting) have been screened in the United States. We have expanded our efforts globally to identify and cure children who need our help, and we'll keep going until stories like Jeffrey’s become rare.  

  • 10 Warning Signs of Primary Immunodeficiency

    The Jeffrey Modell Foundation created the “10 Warning Signs of Primary Immunodeficiency” along with the American Red Cross and the JMF Medical Advisory Board to continue its mission to assure earliest possible diagnosis.

    Since the early 1990s, the “10 Warning Signs” have been translated into more than 50 languages and distributed throughout the world. In 2010, the Warning Signs were slightly revised as the medical community developed greater knowledge of Primary Immunodeficiencies.

    Primary Immunodeficiency causes children and adults to have infections that come back frequently or are unusually hard to cure. 1:500 persons are affected by one of the known Primary Immunodeficiencies.

    If you or someone you know is affected by two or more of the following Warning Signs, speak to a physician about the possible presence of an underlying Primary Immunodeficiency.

    1. Four or more new ear infections within 1 year.
    2. Two or more serious sinus infections within 1 year.
    3. Two or more months on antibiotics with little effect.
    4. Two or more pneumonias within 1 year.
    5. Failure of an infant to gain weight or grow normally.
    6. Recurrent, deep skin or organ abscesses.
    7. Persistent thrush in mouth or fungal infection on skin.
    8. Need for intravenous antibiotics to clear infections.
    9. Two or more deep-seated infections including septicemia.
    10. A family history of PI.

    To read the 10 Warning Signs in additional languages, click here: http://www.info4pi.org/library/educational-materials/10-warning-signs-international.

  • "Roots & Wings" - Elexandro Cordova

    June 2022 – Our “Roots & Wings” program continues to take flight! By providing travel and support to families whose child has been identified with a potentially life-threatening PI, we hope make life easier, reduce their burden, and enable as many children as possible to have a second chance at life.   

    Today, I want to share the story of one of our "Roots & Wings" patients, ElexandroCordova, who is from Peru. In December 2018, at just six months old, Elexandro was diagnosed with IPEX. Thankfully, he was under the care of Dr. Juan Aldave, one of our excellent physicians in the JMF Peruvian Centers Network. Dr. Aldave and his colleagues worked to secure a humanitarian aid (free) bone marrow transplant for Elexandro at Bambino Gesu Hospital in Rome in January 2019, just one month after he was officially diagnosed.

    On February 12, 2019, Elexandro and his family traveled to Rome to prepare for his transplant, with transportation sponsored by our “Roots & Wings” program. Once settled, Elexandro was seen by physicians at Bambino Gesu, but fell critically ill for several weeks before his transplant. Thanks to the outstanding care of his medical team, Elexandro recovered well and received his bone marrow transplant at Bambino Gesu on May 22, 2019.

    While Elexandro recovered from his transplant and his health was monitored in Rome, back in Peru, Dr. Aldave continued to work hard for other patients. Dr. Aldave is the director of the Jeffrey Modell Infusion Center in Peru, one of two locations in the world. His center is an annual recipient of our WIN Grant, and he also participates in the “Jeffrey’s Insights” genetic sequencing program, which continues to produce unbelievable results and discoveries. Dr. Aldave has also received a research grant from JMF to support his ongoing investigations.

    Dr. Aldave is an extraordinary care provider and followed Elexandro’s recovery until he was cleared to return home to Lima, Peru with his mother on July 31, 2020. Today, Elexandro is happy and healthy. For him, every day is a special day! We are forever grateful and thankful to his physicians for their support and care and providing him with a second chance at life.

  • The Importance of Genetic Sequencing - The JMCN is Doing Something!

    We never could have imagined all of the scientific discoveries and miracles over the past thirty-five years. While Jeffrey struggled with his condition, we never met another family and Jeffrey never met another child with Primary Immunodeficiency.

    We are making a difference in the lives of children, even if it’s one child at a time. One of the ways we’re making a difference is through our no-cost genetic sequencing program, “Jeffrey’s Insights,” at Jeffrey Modell Centers worldwide. All 265,000 registered patients are eligible for the sequencing program, which we piloted in 2019. Since then, our gene panel has increased from 207 genes to 429 genes—an incredible sign of progress. 

    “Jeffrey’s Insights” was created to help identify genetic defects, promote earlier and more precise diagnosis, enhance clinical management, improve access to care, establish earlier and more effective treatment, and put an end to the diagnostic odyssey. It’s all part of our goal and mission to ensure the earliest possible diagnosis, fulfilling our promise to Jeffrey to Do Something! and help the thousands of children whose lives he has touched so greatly.

    The JMCN is proud to offer no-cost Next Generation Sequencing (NGS) to the most complex patients, which we believe should be an early consideration for any patient with a suspected PI. Thanks to the gifted physicians who lovingly care for the patients, nurture them, and give them life, there have been alterations in clinical diagnosis, disease management, treatment, and genetic counseling for many patients. Nearly half of the patients involved in sequencing through “Jeffrey’s Insights” experienced changes in outcome, and nearly all diagnosed patients experienced alterations in therapy due to the genetic sequencing results obtained.

    Our newest published manuscript highlights how critical NGS is for PI patients. We know that NGS offers a path to hope, understanding, and ultimately relief for patients and families. However, despite the critical need for genetic sequencing, it’s all too often inaccessible to patients due to cost, insurance, access to care, and other limiting obstacles. Barriers to care results in a prolonged diagnostic journey without genetic evaluation, and sometimes, unknown diagnosis. 

    Our journey is far from over…we are unstoppable because we have miles to go, more paths to pave, more dreams, to dream, and more stars to reach! Together, we can enhance the quality of life for PI patients…one gene at a time. Let’s keep Doing Something!

    Read the complete manuscript herehttps://www.frontiersin.org/articles/10.3389/fimmu.2022.906540/full

  • June 14 is World Blood Donor Day – “Do Something!” and Donate!

    Today is World Blood Donor Day! This year’s theme is “Donating blood is an act of solidarity. Join the effort and save lives.” We urge everyone who meets the donor criteria to join us in answering Jeffrey’s pleas for us to “Do Something!” by donating blood today, and whenever you can in the future.

    Just one pint of blood can save the lives of up to three people! Blood is one of the main elements of your immune system and is made up of several different components: plasma (55%), platelets and white blood cells (<1%), and red blood cells (44%). Now, more than ever, all blood types are needed to help patients and support lifesaving treatments and transfusions for people of all ages.

    There are different types of blood donation: whole blood, power red, platelet, and plasma, to name a few. The most common type of blood donation is whole blood, which is usually used for transfusions, trauma patients, and burns. For patients with Primary Immunodeficiency, plasma can make the difference between life and death. Plasma cannot be made artificially in a lab and can only be obtained from healthy donors who generously give their time to donate the gift of life. 

    During a plasma donation, whole blood is removed, and plasma is collected and separated through a process called plasmapheresis. The remaining blood components are returned to the donor. According to the New York Blood Center, you can donate whole blood every 8 weeks, automated red cells every 16 weeks, platelets every 3 days up to 24 times each year, and plasma every 28 days. Signing up for a donation is a fantastic way to Do Something!

    Here are some other ways you can support people living with rare disease by “Doing Something!”

    • Organize a blood drive near you
    • Share your experience as a blood donor with friends and family
    • Sign up for recurring appointments at your local blood donation facility
    • Consider signing up to donate plasma, which makes up 55% of our blood, to directly impact treatments for PI patients!

    To find a blood donation center near you, visit  https://www.redcrossblood.org/give.html/find-drive.

  • Inspired by Jeffrey – International Children’s Day 2022

    Jeffrey never knew how he would change our lives and the lives of so many thousands of children he would never meet, forever.

    We used to ask ourselves, would there ever be research that would change the lives of patients like Jeffrey? Could children in generations to follow even dare to dream of a normal childhood? We had to Do Something to fulfill his unanswered prayers.

    Our constant motivation is our JMF “Kids” who inspire us, propel us, and compel us to continue our journey. Their underlying Primary Immunodeficiency disease interrupts their activities, detours their plans, and shatters their dreams.  We feel so fortunate to have the privilege to enrich the lives of others, lessen the misery of uncertainty that comes with disease, and save the lives of a precious few.  

    When we started the Foundation, one of our goals was to make sure that no other child struggling with a PI disease would have to be alone. Inspired by Jeffrey, we created Kids with Immune DeficiencieS (KIDS) Day, a fun-filled day away from hospitals and doctor’s offices where families can meet each other, connect, and develop friendships in a casual environment. KIDS Day is provided at no cost to patients and their families. It is our sincere hope that these events provide some light and fun for our JMF Kids who sadly miss so much of their normal childhood stuck in doctor’s offices or sick at home.

    There have been over 600 KIDS Days since we started the program, and we are thrilled that in-person events are once again becoming a possibility. It is thanks to you, our community of constant supporters, that we are creating a brighter future for children living with PI so that stories like Jeffrey’s become rare.

    Happy International Children’s Day to all of our JMF Kids all over the world – you are our forever inspiration and motivation for encouraging change and progress!

  • 4 Stages of Testing for Primary Immunodeficiency

    The Jeffrey Modell Foundation created the 4 Stages of Testing Poster in the 1990s to assist physicians in making a Primary Immunodeficiency diagnosis. The poster has been translated into more than 50 languages to help diagnose patients across the world!

    Stage 1

    • History and physical examination
    • CBC and differential
    • Quantitative Immunoglobulin levels IgG, IgM, IgA 1

    Stage 2

    • Specific antibody responses (tetanus, diphtheria, pneumococcus)
    • Lymphocyte surface markers CD3/CD4/CD8/CD19/CD56

    Stage 3

    • Lymphocyte proliferation studies (mitogen/antigen stimulation or skin delayed type hypersensitivity)
    • Neutrophil oxidation burst (if indicated)
    • Response to pneumococcal vaccine (for ages 3 and up)
    • Primary Immunodeficiency gene sequencing panel

    Stage 4

    • Complement screening CH50, specific complement components, AH50
    • Enzyme activity measurements (e.g., adenosine deaminase, purine nucleoside phosphorylase)
    • Phagocyte studies (e.g., surface glycoproteins, mobility, phagocytosis)
    • NK cytotoxicity studies
    • Neo antigen response to test antibody production
    • Other surface molecules for detailed immunophenotype (e.g., memory B cells, T/NK cell subpopulations)
    • Specific protein levels (e.g., SAP, Perforin, WASp)
    • Cytokine or other function receptor quantification
    • IgG subclass analysis
    • Genomic studies

    To read the 4 Stages poster in additional languages, click here: http://www.info4pi.org/library/educational-materials/10-warning-signs-international.

  • Gene Therapy - Treatment Overview

    After Jeffrey was diagnosed, we travelled all over the world to get answers—Jeffrey could have anything he wanted, but we couldn't give him his health. He underwent some of the most innovative treatments from the top doctors in the world, but science hadn’t caught up with us in time.

    Now, there are several different types of treatment available for patients with even the most severe PIs. As part of a new series on our blog, we’ll be providing an overview of different treatments so that you, our community, can learn more, stay informed, and have access to the best information at your fingertips.

    Today, we want to explain Gene Therapy. Gene therapy is a type of medical treatment that uses a person’s own genes as a method to treat their disease. Researchers and investigators approach this type of therapy in a variety of different ways, such as replacing a mutated gene with a new gene, inactivating a mutated gene that is not functioning properly, and introducing a new gene in order to fight disease.

    Gene therapy can be used to treat a growing list of PIs, and based on your physician’s recommendation, may be the appropriate treatment protocol for specific disorders. We have witnessed an increased success rate of this therapeutic benefit for a range of PIs, and look forward to tracking future research progress in this area.

    True to our mission, early diagnosis remains the best way to prevent severe infections and improve a patient’s outcomes and quality of life. We are grateful for the scientific progress surrounding treatments over the past thirty-five years, and hope that with continued progress, Jeffrey’s story will be rare among PI patients.

  • JMF Programs: All About the Jeffrey Modell Centers Network (JMCN)

    After Jeffrey’s diagnosis, we saw hepatologists, hematologists, immunologists, rheumatologists, oncologists, and just about every other “ologist” that exists. At the time, there was no support or information network for people to access and learn about Primary Immunodeficiency, unlike virtually every other illness. We established the Jeffrey Modell Centers Network (JMCN) over 20 years ago to meet the rising need for referrals and specialized centers for patients identified with PI, and encourage our mission of earliest possible diagnosis, meaningful treatments, and ultimately, cures. 

    The JMCN is ever-expanding. Our expert physicians and researchers continually contribute to the cross-continental network, discovering and sharing invaluable medical developments and encouraging equal access to care for the more than 285,000 patients in our database. The network has served the foundation to pursue our goals, raise awareness, and in turn, reduce mortality and morbidity while improving quality of life for as many patients as we can. 

    All of these ongoing efforts significantly impact the field of immunology on a global scale. We have seen an increase in both diagnosed and treated patients across the globe, advocated for greater access to treatments, and encouraged the implementation of standard of care and best practices. Our JMCN investigators are able to connect with other physicians and researchers from within the network to coordinate studies and facilitate clinical trials, optimize research advances, identify new therapeutics targets, and gain a better understanding of genetic mutations. 

    We are thrilled to have witnessed the drastic improvement in PI patient outcomes due to early recognition, diagnosis, and treatment. Today, after two decades of substantial growth and meaningful work, the JMCN includes 918 physicians at 405 academic institutions in 320 cities and 87 countries, spanning across 6 continents. And these numbers keep growing! It is our sincere hope that the JMCN continues to be a critical catalyst for scientific discovery and progress in support of our work to find cures and treatment for patients living with PI.

    Need an immunologist? Find one of our JMCN Expert Immunologists by using the up-to-date search tool on our website: https://www.info4pi.org/information-booth/find-an-expert.

  • Get to Know JMF - Roger

    We are thrilled to begin a new monthly series on the blog, "Get to Know JMF." Each month, we'll share a Q&A with one of our wonderful staff members so that you, our community, can get to know us better. Today, we're introducing you to Roger. 

    Why did you decide to work at JMF?

    My decision to work at the Jeffrey Modell Foundation was largely in part to a personal belief that I carry with me. I was a recent college graduate when I was invited to a community organizing event hosted by the Robin Hood Foundation in New York City. At this event, one of their board members said something, that had a profound impact on me. The board member was Marian Wright Edelman, during her remarks she said, “Service is the rent we pay for being. It is the very purpose of life, and not something you do in your spare time.” Those words were embedded in me and still are my inspiration and North Star for what I do. Being a part of the Jeffrey Modell Foundation has allowed me to live this exact purpose, while having a global impact on the constituents that we serve at the Foundation. When I learned of JMF’s mission and the programs it ran, I was quickly and immensely invested in being a part of this great and impactful organization.

    Briefly describe your role at JMF.

    I am currently the Chief of Staff at the Jeffrey Modell Foundation. My role includes various responsibilities in different areas of the Foundation. Some of the areas include programs, information technology (IT), operations and equipment, until recently it included social media and communications, SPIRIT Analyzer, documentary distribution, website hosting and management, and vendor and project management.  I, along with our Co-Founders, Vicki and Fred Modell, manage several programs offered by the Jeffrey Modell Foundation. Some of the programs are The World Immunodeficiency Network (WIN), which also includes WinMD and WinRN, the “Roots & Wing” program, Artificial Intelligence for Primary Immunodeficiency (AI for PI), senior executive leadership assistance, among other day-to-day responsibilities.

    What would you like people to know about your work?

    Every day at the Jeffrey Modell Foundation is different than the last. We receive many requests from all over the world, on different subject matters, and we try our best to provide helpful answers with resources to the many inquiries. We are a small but mighty team at the Foundation. One of the best assets the Jeffrey Modell Foundation has is its great, capable, and passionate staff. We are all working in the same direction to help our global Primary Immunodeficiency community while fulfilling our organizational mission.

    What inspires you?

    Being at the Jeffrey Modell Foundation is a lifelong reward for me personally. I have the privilege and honor of being inspired by two of the greatest and most driven parents I have ever met, Vicki and Fred Modell. Their passion, their drive, their kindness and generosity are second to none. You would be hard pressed to find leaders who are as committed as Vicki and Fred are to ensuring that their son’s impactful call to action for them to “Do Something” is fulfilled. Vicki and Fred are my inspiration at the Foundation. They will not stop until they have helped every Primary Immunodeficiency patient today, tomorrow, and in the future, enjoy better health and quality of life. I am honored to be by their side, to help them every step of the way. There is a synergy between their drive and my beliefs that brings the best out of us to help make a difference.  My mantra at the Jeffrey Modell Foundation is “Let’s do it”. I don’t like to give up on anyone or anything, if there is something that I can do, I will try my best to do it. This is directly inspired by our Founder, Jeffrey Modell. Jeffrey said, “Do Something,” and my response to help his parents, Vicki and Fred is, “Let’s do it.”

    What three words would you choose to describe yourself?

    Helpful, kind, and passionate.

    What is your favorite JMF memory?

    I think my favorite memory at the Jeffrey Modell Foundation is being re-created each day. Being a part of the camaraderie of the staff, and the excellent skills we each possess, helps to create great memories daily. If I had to choose a single memory to date, I would say, it was the first time I got to experience the good news that a baby we helped to transport to an emergency life-saving bone marrow transplant was saved and healthy. That moment will always be with me. As a parent myself, I tried to put myself in that family’s shoes, and think what it meant to them, that their child can now lead a healthy life thanks to the courage and dedication of two parents, Vicki and Fred, who refused to let other families suffer the loss of a child to Primary Immunodeficiency if it could be prevented.  

  • All About Plasma – “Do Something!” and Donate!

    As Jeffrey began to experience the recurring infections typical of Primary Immunodeficiency, our lives became a whirlwind of hospitals and doctors’ offices. There were some treatments available, but they brought problems of their own.

    At three or four years of age, Jeffrey had to endure painful, intramuscular injections of gamma globulin given with huge needles that left him sore for days. By the time he was ten or eleven, he was started on intravenous gamma globulin (IVIG). IVIG therapy replaced the missing antibodies his body was unable to produce, purified from plasma donated by volunteers. These treatments sometimes improved his life for weeks at a time.

    Plasma makes up 55% of our blood and contains antibodies, water, salts, enzymes, and proteins. Plasma cannot be made artificially in a lab and can only be obtained from healthy donors who generously give their time to donate the gift of life. For patients with Primary Immunodeficiency, plasma can be the difference between life and death.

    Every year it takes over 130 plasma donations to treat just one patient with PI. Volunteer donors can supply plasma twice in a seven-day period and will also be compensated for their donation. The US supplies the world with plasma, so regular donations are essential for life-sustaining and life-saving treatments for patients living with PI and other life-threatening rare diseases.

    We urge everyone 18+ who meets the screening criteria to join us in answering Jeffrey’s pleas for us to “Do Something!” by donating plasma. Donated plasma is used to create lifesaving treatments for people living with PI and help their immune systems stay strong to live happy and healthy lives!

    Here are some other ways you can support people living with PI and “Do Something!”

    • Share how plasma protein therapies have impacted your quality of life as a patient
    • Organize a plasma donation drive near your home
    • Share why plasma donation is important to you as a donor
    • Tell friends and family how important it is to donate plasma and save lives

    To find a plasma donation center near you, visit donatingplasma.org/donation/find-a-donor-center.

  • "Roots & Wings" - Arturo Garcia

    Finding new ways for us to follow Jeffrey’s wishes asking us to “Do Something!” is central to our mission and guides our work each and every day. Because of Jeffrey, we were able to establish the “Roots & Wings” program to provide travel (the “Wings) and related support (the “Roots”) to families whose child has been identified with a potentially life-threatening Primary Immunodeficiency that requires lifesaving medical care far away from home. 

    These patients often require transportation to specialized centers where they might reside while undergoing treatment. Families often stay in a Ronald McDonald House for many months, and they may not have the funds to do so. We would like to make life easier, reduce their burden, and enable as many children as possible to have a second chance at life. 

    Over 60 “Roots & Wings” grants have been awarded to support travel and housing for families of children identified at birth with life-threatening diseases.  We’re able to help babies from all over the world, from Paraguay to the Philippines, Navajo Nation to New Mexico, Rome, and so many more…

    I’m proud and thrilled to share the story of one of our “Roots & Wings” babies, Arturo Garcia, who is currently undergoing care at the Ronald Reagan UCLA Medical Center led by the extraordinary Dr. Donald Kohn.

    In January 2020, Arturo was diagnosed with a congenital disease called Chronic Granulomatous (CGD) after months of heartbreaking uncertainty and time spent in and out of hospitals. After learning about his diagnosis, Arturo’s parents realized that the type of specialized medical care he’d need wasn’t available near their home, so they made the difficult decision to leave Venezuela.

    Desperate for answers and guidance about how to save their baby, Arturo’s parents found the contact information for a Venezuelan immunologist on our website. Within two days, I was in contact with his parents, and we started forming a plan to carry out Arturo’s medical care in the United States. 

    Thankfully, Dr. Jennifer Leiding, a pediatric immunologist and expert in CGD, quickly answered our call for help and began arranging Arturo’s transfer from Venezuela to Miami, Florida. Even more remarkably, Arturo’s entire family would be able to travel with him and remain in Florida during his care. On February 3, 2020, just weeks after Arturo’s initial diagnosis, the baby and his entire family traveled to the United States. 

    Today, thanks to the amazing medical care and dedication of our Jeffrey Modell Centers Network, Arturo is in good health and continuing his treatment with Dr. Kohn at UCLA. We are grateful and thankful for the opportunity to support Arturo’s family and wish him continued health and a bright future. Our efforts to save the babies like Arturo are motivated by love, earnest devotion, and motivation to fulfill our mission, always inspired by Jeffrey.

  • What are Immunoglobulins (Ig)?

    We’ve shared the story of Jeffrey’s treatment before: first the painful, intramuscular injections of gamma globulin that left him sore for days, followed by the intravenous gamma globulin (IVIG) therapy. The treatment sometimes improved his life for weeks! Jeffrey was in the first clinical trial for IVIG at Memorial Sloan Kettering, under the care of Dr. Robert Good, and there was so much information for us to absorb as parents.

    Our lives became a whirlwind of hospitals and doctors’ offices. When appropriate, immunoglobulin therapy is an accepted treatment for a wide range of Primary Immunodeficiencies. We had to quickly learn what immunoglobulin was and how different therapy options could help keep Jeffrey healthy.

    Immunoglobulins (Ig) are antibodies produced by immune cells to protect your body from different bacteria and infections. Ig products are complex to produce and depend on regular blood and plasma donations.  Ig therapy can be intravenous (IVIG) or subcutaneous (SCIG) and must be maintained regularly to keep patients as healthy as possible.

    Each dose of immunoglobulin therapy is individually determined based on the patient’s weight, Ig blood levels, tolerance of treatment, and symptoms. IVIG is typically administered every 3-4 weeks through your vein at a medical facility. SCIG is typically administered weekly into the fatty tissue under your skin through a fine needle.  Your care professional will train you to administer the treatment on your own, wherever you may be. Be sure to insert the infusion in the same place to promote quicker recovery, and store materials carefully according to instructions.

    Remember to consult or discuss with your doctor if you are confused or have questions at any point before starting or throughout your treatment.

    We are happy to share the wonderful brochure that AusPIPS Inc., in collaboration with IDFA, IDFNZ, Myasthenia Alliance Australia and Myeloma Australia, has developed to explain the uses of immunoglobulin replacement therapy for new and existing patients. AusPIPS Inc. is a collective of people who have had a Primary Immune Deficiency (PID) diagnosis along with parents of children who have had the same.






  • Join us and “Do Something!”

    Throughout his life, Jeffrey would say to us, “Do Something! You went to college. You’re smart!” And to his doctors, he would say, “Do Something. You’re smart. You went to medical school!” How heartbreaking it was to hear your child say that. Little did he know, his doctors and his parents did everything they could, but sadly, science had not caught up to Jeffrey.

    We could not let his life be in vain. We had to “Do Something” to fulfill his unanswered prayers. Jeffrey never knew how he would change our lives forever, and the lives of so many thousands of children he would never meet. But in the spirit of his optimism and courage, we created the Jeffrey Modell Foundation - not in memory of his death, but in celebration of his life, and to give life.

    In this new blog series, we will be sharing new ways for you, our community of supporters, to join us and “Do Something!” We hope to encourage more people to get involved and take action, so we can continue on our PI journey together. We will provide resources, answer questions, and share new ideas for ways to get involved and provide support.

    Together, we can meet the challenges, capture the opportunities, and give all children for generations to come a brighter, healthier future.

  • Celebrating the People and Things We’re Thankful for in the JMF Appreciation Garden

    Celebrating the People and Things We’re Thankful for in the JMF Appreciation Garden

    While the past several months have been challenging, we are so grateful to witness the amazing ways our community has come together.  There has never been such a showing of courage, bravery, support, hope, and appreciation… and it warms our hearts to see it and be a part of it!

    We want to make sure that these sentiments are what we focus on, hold onto, and encourage in others. While the JMF Appreciation Garden has always been special, it now feels more important than ever!

    A garden symbolizes growth, renewal, and life… each leaf of each tree and every petal on every flower represent something to be grateful for… and we must always remember that there is so much to be thankful for.

    We’ve seen the resilience of patients and families affected by Primary Immunodeficiency as they joined together to educate the world around them about their challenges… all while protecting and supporting one another.  We’ve seen the bravery of doctors, nurses, and other healthcare professionals who are working endlessly to care for those who are unwell and those who are the most vulnerable. And we’ve seen expert immunologists lovingly take care of Primary Immunodeficiency patients to ensure they have the treatment and support they need.  And we’ve heard the thunderous applause each evening for the essential workers who have courageously helped keep our cities, towns, and neighborhoods running.

    It’s the perfect time to celebrate the people and things that help make our lives fuller, richer, better, easier, and help put a smile on our faces.  Each of these are reminders of what to appreciate… the strength, the love, and the spirit of communities that band together to show support for one another.

    Join us in the JMF Appreciation Garden and let’s give a big round of applause for the people and things that inspire us, motivate us, and provide us with comfort!  Let’s make sure to celebrate and honor them by planting a seed in their name for the wonderful things they do for us.  Pick a flower, write their name in the center and the reasons why you chose this person in the petals!  You can also plant a tree and share the things you are grateful for on the leaves.

    It all starts with a single seed, which can turn into a beautiful flower or a strong standing tree… from one single seed so much can grow… a garden, a meadow, a forest… just like hope, it has the power to grow, show love, and provide comfort and strength to all who come across it.

    Have you been to the JMF Appreciation Garden? Come visit and spread some cheer by planting seeds for the wonderful people and things in your life that you want to honor… the JMF Appreciation Garden is waiting for you…

    Click here to help the Appreciation Garden grow!



    Please be sure to read the 2019 J PROJECT Konya Declaration by clicking here

  • A Posture of the Heart

    Vicki’s Voice: I have invited a special team member of the Jeffrey Modell Foundation to be a guest blogger on Vicki’s Voice. My inspiration, my words.
    Please click here to read her thankful and meaningful thoughts. We love it and we think you will too!

  • Bright Lights, Dark Nights

    Vicki’s Voice
    My inspiration…my words

    Bright Lights, Dark Nights

    They say New York is the “city that never sleeps”, but from March until July, my city was in a deep slumber, not afraid of the dark but in mourning for the number of lives lost. We missed the sounds of children laughing, dogs barking, music playing and horns honking… Offices were closed, skyscrapers were dark, and so were museums, schools, restaurants, gyms, sports arenas and Broadway theaters – but the neon lights in Times Square stayed on, reminding us of the good times and beckoning us to return to life as we knew it. Yet there were no people in the streets, the nights were dark. – The life we took for granted was on pause and so were the freedoms we have always enjoyed.

    We have traveled the world and have loved every city, town and village that we have visited, but what makes New York City such a great city is our diversity. We are teachers, doctors, nurses, ambulance drivers, EMTs, firefighters, police officers, mail carriers, office workers, and we are so many ethnicities, languages, cultures and religions, but we are all one colorful rainbow. We are strong for each other, we respect each other, we are tolerant, we are compliant and even all wear our masks to keep each other safe. We love our differences; we cherish what makes us one. We will be patient and wait for our city to fully come alive so that we can celebrate life with friends. The only enemy we share is this relentless, insidious virus. Hopefully soon we can look forward to chasing rainbows, to even brighter lights to lessen our dark nights and bright sunnier days ahead.  

  • Tienes Que Saber


    Mi inspiración. Mis palabras.

    Parece que todos los días recibo comunicaciones de pacientes y familiares que están ansiosos, inciertos, temerosos, aprensivos y confundidos con respecto a la información sobre COVID-19 y trastornos relacionados. Los representantes del gobierno, los funcionarios de salud pública, los científicos, los médicos y los medios de comunicación no ofrecen explicaciones consistentes de esta devastadora pandemia.

    Para nosotros, en la Fundación Jeffrey Modell, es especialmente preocupante para los pacientes con Inmunodeficiencias Primarias o genéticas, que se encuentran entre la población más vulnerable debido a su sistema inmunitario debilitado. Nos apasionan estos pacientes y sus familias, y su exposición, riesgo e incertidumbre es simplemente inaceptable. ¡Todos necesitamos respuestas y las necesitamos ahora!

    En resumen, "Tienes Que Saber!" ...

    ·         ¿Por qué mi hijo o miembro de mi familia se enferma con demasiada frecuencia?

    ·         ¿Está de acuerdo en que "Los Niños Se Enferman" no es un diagnóstico?

    ·         ¿Es contagiosa la inmunodeficiencia primaria (IDP)?

    ·         ¿Acepta el hecho de que el 70-90% de los pacientes con IDP aún no se diagnostican?

    ·         ¿Hay señales de advertencia de IDP?

    ·         ¿Hay materiales educativos disponibles?

    ·         ¿Existen pruebas para IDP que sean específicas, sensibles y los resultados se puedan informar rápidamente?

    ·         ¿Existen tratamientos que puedan proporcionar una respuesta inmune?

    ·         ¿Los tratamientos son seguros y efectivos respaldados por ensayos clínicos aleatorizados controlados con placebo?

    ·         ¿Puede la secuenciación genética aclarar la condición?

    ·         ¿La secuenciación de genes está generalmente disponible a bajo costo o sin costo?

    ·         ¿Dónde están los centros en todo el mundo que se especializan en el diagnóstico y el tratamiento de estas afecciones?

    Y estos son solo algunas inquitudes que me vienen a la mente de inmediato ... te instamos a ...


    Para obtener más información sobre la Fundación Jeffrey Modell, visite info4pi.org

    Nuestra misión es probar, diagnosticar, tratar y secuenciar


    ¡Esperanza, defensa y acción!

    Nuestra inspiración son nuestros pacientes ...

    Hagámoslo juntos…

    Y esté atento mientras intentamos ayudar a responder algunas de estas preguntas ... porque "¡Tienes que saberlo!"

    En mis palabras


  • "You Gotta Know!"

    My inspiration. My words.

    It seems that every day, I hear from patients and families who are anxious, uncertain, fearful, apprehensive, and confused with respect to information about COVID-19 and related disorders.  Government representatives, public health officials, scientists, clinicians, and the media do not offer consistent explanations of this devastating pandemic.

    For us, at the Jeffrey Modell Foundation, it is especially troubling for patients with Primary or Genetic Immunodeficiencies, who are among the most vulnerable population given their weakened immune systems.  We are passionate about these patients and their families, and their continuing exposure, risk, and uncertainty is simply unacceptable.  All of us need answers and we need them now!


    In short, “You Gotta Know!”…

    ·         Why is my child or family member sick too often?

    ·         Do you agree that “Kids Get Sick” is not a diagnosis?

    ·         Is Primary Immunodeficiency (PI) contagious?

    ·         Do you accept the fact that 70-90% of PI patients are still undiagnosed?

    ·         Are there Warning Signs of PI?

    ·         Are there educational materials readily available?

    ·         Are there tests for PI that are specific, sensitive, and results can be reported quickly?

    ·         Are there treatments that can provide an immune response?

    ·         Are the treatments safe and effective supported by randomized placebo controlled clinical trials?

    ·         Can gene sequencing clarify the condition?

    ·         Is gene sequencing generally available at little or no cost?

    ·         Where are the Centers worldwide that specialize in diagnosis and treatment of these conditions?

    And these are just a few that immediately come to my mind…we urge you to…

    Ask Questions!

    Fight For Answers!

    Don’t Accept Delays!

    Persist and Persevere Until You Reach The Facts! 

    To learn more about the Jeffrey Modell Foundation, visit info4pi.org

    Our Mission is to Test, Diagnose, Treat, and Sequence


    Hope, Advocacy and Action! 

    Our inspiration is our patients… 

    Let’s do it together… 

    And stay tuned as we try and help answer some of these questions…because You Gotta Know!”

    In my words,


  • Vicki and Fred Modell: “Life is not about waiting for the storm to pass… it’s about learning to dance in the rain”

    Go inside the Jeffrey Modell Foundation… as Thrive Global’s Ben Ari talks with its Co-Founders, Vicki and Fred Modell, as a part of his ongoing “individuals and organizations making an important social impact” series.

    Click read the full article here.

  • JMF Spotlight Series: Yolanda, always “do something” with heart!

    http://downloads.info4pi.org/images/yolanda-resize-662x486-5e46c934e5d63-originalMy name is Yolanda and I have been afforded the most amazing opportunity to work with a wonderful organization called the Jeffrey Modell Foundation.

    I started here on Dec 2, 2019, and one of the first projects that I was given was to update the files here at JMF. I was a little nervous only because I didn’t want to make a mess of things, but this project has allowed me to read and see all the hard and dedicated work that Mr. & Mrs. Modell has done & continue to do. They have poured their gifts, talent, and abilities not to mention their souls into helping others with Primary Immunodeficiencies.

    They have reached far and wide, crossed oceans, walked on mountain highs and valley lows to helping others with this disease.

    They have fought and have been the voice for other countless children & have given them a chance at LIFE.

    I’ve learned what SCID (Bubble Boy disease) is.  Mrs. Vicki shared information about how having a bone marrow transplant or gene therapy will help the child who has the deficiency. There is a plethora of information that can be tapped in to.

    Vanessa will be teaching me the ins and out of KIDS DAY, which is a fun day across the US. Seeing the children smile & focusing on them will be the highlight of my day.  I am excited to be working with Vanessa on this project.

    Mrs. Vicki has a way of making everything fun.  And it’s done with such perfection.  Fred & Mrs. Vicki are masterful at what they do.

    JMF has a staff that is phenomenal and out of this world, Vanessa, JoAnn, Roger, Jessica, & Rachel are all so talented & brilliant, did I mention extremely helpful? They are dedicated with the same vision of Fred and Vicki doing everything in decency, in order and with a heart!

    It is a pleasure to be on board, I am excited about learning and taking this journey and working with everyone.

    Thank you for the opportunity, I am truly grateful.

    Warmest Regards,

  • Primary Immunodeficiency and Gene Sequencing

    Some patients with a Primary Immunodeficiency diagnosis may have a known gene defect, while others who have a Primary Immunodeficiency diagnosis may have an unidentified gene defect.

    Today, there are new medical technological developments that can provide more specific answers to those without an exact diagnosis; this is where gene sequencing comes in.

    Advancements in the understanding of gene sequencing have provided knowledge, hope, and relief to many families as they travel on the diagnostic odyssey; the journey to an official diagnosis that can oftentimes take years to obtain.

    Gene sequencing gives researchers the ability to read the building blocks within a patient’s DNA.  This, in turn, provides a vast amount of specific information about any given patient, as well as the opportunity to uncover the exact root of the problem.  In the case of Primary Immunodeficiency patients, the exact gene responsible for their condition – and an official proper diagnosis.

    With more than 400 different Primary Immunodeficiency defects already identified, and more being discovered, gene sequencing serves as the gold standard to help patients with an immunodeficiency discover their specific diagnosis earlier, allowing them to start the appropriate treatment earlier, and improving their quality of life quicker than previously done.

  • The Comeback of the Physician “House Call”

    There has been a lot of conversations surrounding the re-emergence of physician “house calls.”

    What does this mean for those affected by Primary Immunodeficiency? It could be very, very helpful.

    Having physicians make house calls will help patients with Primary Immunodeficiency – of all ages! – feel more at ease during their visit.  It could also provide additional information to the physician, as they will be able to better assess how to help the patient by seeing them in their home environment.

    We recognize that making house calls creates additional work for physicians, but we believe that the comfort and assistance it provides are worth their weight in gold – and to all of the physicians who are beginning to integrate house calls into the way they help their patients – we cannot thank you enough.

    Have you had a physician make a house call? If you had the opportunity, would you?

  • Guest Blogger: Katie Saria

    I am so thrilled to introduce myself to the Primary Immunodeficiency community through this blog! My name is Katie and I am the newest addition to the Jeffrey Modell Foundation. While interviewing, I considered several wonderful foundations and nonprofits. What peaked my interest with JMF was, in addition to ultimately finding the cures for a disease, there was a strong focus on embracing the families of PI patients—especially mothers.

    Vicki told me that while Jeffrey struggled with his condition, she never met another family and Jeffrey never met another child with PI. She described the experience as lonely and isolating; she explained the long hospital stays, the confusing treatments, the desperate paradox of insisting the doctors to run every possible test, but also wanting the needles and the prodding to stop. I imagine being a mother to a healthy child is like building a puzzle; as they grow you are adding pieces to eventually reveal the finished picture. Caring for a child with PI is like building that puzzle on the busy sidewalks of Times Square; sometimes it’s all you can do to simply keep the pieces from falling apart.

    “We established the Jeffrey Modell Foundation with five specific objectives: to conduct clinical and basic research on PI; to educate primary care physicians about PI symptoms and treatments; to provide patients and their families with information and supportive communities; to advocate for greater support at the government level; and to raise public awareness about these diseases,” Vicki continues, “It was always my dream to have a happy, healthy child. But now I dream of helping mothers in the same situation I was once in."

    The brave mothers, who refuse to accept their children’s medical mysteries, propel the Jeffrey Modell Foundation forward. Vicki and Fred were able to harness their fear and heartbreak into a mission to never let another mother go through a Primary Immunodeficiency diagnosis alone. The Jeffrey Modell Foundation is more than a philanthropic endeavor, patient advocacy group or any ordinary nonprofit: it’s a community searching for answers. Mothers are our strong, determined partners in this fight.

    JMF’s relentless pursuit of mandatory newborn screening has ended preventable deaths of infants with SCID in the United States. This means thousands of mothers are building precious puzzles; excited and curious about the finished picture, instead of merely struggling to protect it from further damage. Each year, more physicians and nurses are educated about the immune system and 10 Warning Signs. Scientists and researchers are working harder than ever to find treatments and cures. What I have learned, is that behind every sick child with PI is a worried mother and standing behind that worried mother is the Jeffrey Modell Foundation and the community of hope it has built.

  • Get to know Maggie Shaw

    Over the past 30+ years I have had the privilege, although sometimes bittersweet, of meeting families who have been affected by Primary Immunodeficiency and other rare diseases.

    Recently I met Maggie Shaw, and we connected instantly mother to mother.  She expressed her motivation to begin her own journey to “do something” for her daughter Aunika in a beautiful letter that brought me to tears, but at the same time, made me smile because I could feel her strength, her fortitude, her courage, and most of all, her all-consuming, unconditional, fierce and powerful love for her daughter, Aunika.

    I have shared that often times I can feel Jeffrey imploring me to “do something and do something more” and I knew after reading her note that it was my duty to “do something” and share this with all of you…

    Please click here and get to know Maggie Shaw.

  • Do Something: The Jeffrey Modell Story

    As many of you know, we created the Jeffrey Modell Foundation because of Jeffrey’s plea for us to “Do Something!”

    Over the last 32 years, we have been inspired and motivated by his plea. What started out as hope to find even one family and ease their pain has turned into a global movement, helping countless families around the world. 


    It has been our life’s work and we've had to look back in order to move forward...

    Last year, we were approached by an award-winning film production team to create a documentary to highlight Jeffrey’s story.  Courage and humor were Jeffrey’s greatest assets, his determination was inspiring, and we were honored to have the opportunity to chronicle his life in this new and powerful way.

    The Jeffrey Modell Foundation is proud to announce that the official trailer for the documentary Do Something: The Jeffrey Modell Story is now available.  We invite you to learn more about Jeffrey, and how we’ve continued to “do something” to honor and celebrate his life and his legacy.

    The full-length documentary will be available to audiences worldwide, by early next year, but we wanted to share this “sneak peek” with you, as a small token of gratitude for all that you have done to support Jeffrey’s Foundation, the PI Community, and our incredible journey over the last 32 years… to save the life of a child.

    …And there’s even more for you to see, including film clips, photographs, and some behind the scenes snapshots and I cannot wait for you to see everything – visit www.dosomethingdoc.com to view it all!

    Let’s keep going and “doing something” even if it is only one at a time.

    Thank you and we hope you enjoy!


  • Guest Blogger: Fred Modell

    When Hollywood producers reached out to Vicki and me and said “you have to tell the story of Jeffrey and the Foundation”, I asked them… "why would anyone care?

    I was flattered, but I could not understand why people would want to see the movie.  We had a tragedy, and then we moved forward as best as we could. 

    I think most people would have done exactly the same…

    But, at the urging of family, friends, doctors, patients, pharmaceutical executives, and even members of Congress, we were encouraged to tell our story because we were told it was unique… one of a kind!

    So, on the first day of the film shoot, I was fully prepared to describe the many accomplishments of the Jeffrey Modell Foundation.  I was prepared…but I was wrong!  The producers wanted us to talk about Jeffrey… our love for him and his impact on us, before we ever referenced the Foundation.

    Jeffrey was a great kid.  He was my best buddy!  He was so much fun.  We played tennis, squash, softball, lots of swimming and always sailing.  He had a great sense of humor and loved to entertain.  But above all, he had courage and strength and a deep conviction to do all the things he wanted to in spite of illnesses that temporarily interrupted his life.

    I learned so much from Jeffrey and I really miss him every day!  I did not have the courage and conviction that Jeffrey had.  But his mother, Vicki, was always strong and courageous and brought those qualities to the Jeffrey Modell Foundation over thirty-two years ago.

    Every day, Vicki Modell surprises me.  She speaks to the congressmen, she speaks to pharmaceuticals, and she speaks to families.  She brings families together; in all parts of the world… she’s even working on a program now that brings families together in Israel and Palestine.  She’s a remarkable woman.  She really is.  She happens to be my wife, but she’s just a remarkable person and very well respected in our field.  People know Vicki Modell.  They might say, “What’s the name of the guy she’s married to?”  But, I am okay with that… because at least I know the heart and the strength of this Foundation continue on through her… and she lets me participate in all of the activities alongside her!

    ~ Fred Modell

  • Celebrating Newborn Screening Awareness Month

    As many of you know, September is Newborn Screening Awareness Month, and JMF has long been an advocate to include Severe Combined Immune Deficiency (SCID), and T-cell Lymphopenia as mandatory conditions that newborns are tested for in the United States and around the world.

    Newborn Screening Saves Lives.  It’s that simple, and we wanted to celebrate both the accomplishments that have been achieved, but also highlight what still needs to be done… all in a fun way that showcases its importance to everyone around the world.

    Fresh off the heels of our World Primary Immunodeficiency Week’s #worldPIwish, highlighting the important people in our lives and what we wished and dreamed for them, we decided to continue our cinemagraph celebrations with an important animated storyline. 

    Join us and celebrate Newborn Screening Awareness Month by liking, loving, sharing, and commenting on our most recent cinemagraphNewborn Screening Makes Wishes & Dreams Come True!

  • Guest Blogger: Rachel Bass’s “We’ve Burst the Bubble… And Now We Can’t Stop the Pop!”

    At the Jeffrey Modell Foundation, one of our greatest ambitions is to celebrate our limitless potential... to show that we're unstoppable... and we always aim to do this in a positive and cheerful way.

    We’ve held photo contests to explore our creativity, and encouraged our friends, family and the entire Primary Immunodeficiency Community to “Burst the Bubble” about Primary Immunodeficiency.

    We know that when our community bands together, we can accomplish amazing things... like virtually releasing thousands of balloons to “uplift” our community and symbolize the hope of newly diagnosed patients.

    All these acts of kindness and gestures of support are different ways for us to “Burst the Bubble” about Primary Immunodeficiency and demolish the myth that patients are restricted by their diagnosis.

    We believe and celebrate the exact opposite… the boundary-less and unstoppable force of our community.  While a PI diagnosis is a big part of our lives… we do not let it define us!  Our community may have many different diagnoses but there are even more unique identifiers that make each and every member special!  We are mothers, fathers, daughters, sons… we are teachers, students, athletes, law officials, doctors, nurses… we are dreamers, dancers, artists… each of us special and exceptional! 

    With our community “Bursting the Bubble” about Primary Immunodeficiency … there is quite a lot of *POP* sounding off… and we really like it… and we don’t want it to stop!

    Let’s share with the world that Primary Immunodeficiency does not define us!  Together, let’s stay “popping” and continue to reach new heights and be the unstoppable force we’ve always been.  Let’s make every *POP* count and inspire others to be unstoppable too!

    We won’t stop either and we’ll make it so that every *POP* represents our commitment to early testing, diagnosis, and treatment of Primary Immunodeficiency.

    Let’s stay unstoppable and make it so we “Can’t Stop the Pop” and turn this into the *POP* heard around the world!

    We’ve long been motivated by an unstoppable drive to help those affected by Primary Immunodeficiency around the world… and we’re nowhere near stopping… Stay tuned to see what #Unstoppable ideas are coming next.

    We started by “Bursting the Bubble” about Primary Immunodeficiency, and now we’re creating a world that “Can’t Stop the Pop!”

  • Guest Blogger: Rachel Bass's “Badge of Support”

    Advocacy can mean different things to different people.http://downloads.info4pi.org/images/JM---I-am-a-PI-advocate---kristen-resize-609x575-58e2b26fbe1ef-original

    People all over the world are showing their loyalty and contributing towards causes that are meaningful to them, and then passing along the opportunity to their peers.  Today, people love feeling connected to their community and are excited about sharing their message.

    Creativity is soaring and generosity is at an all-time high, people are having fun participating in these acts that are both entertaining and selfless.  It’s moving to see so many people excited about donating their time, their energy, and their funds to a wide array of organizations. 

    The best part, I believe, is that the messages themselves are being passed around – awareness and education are the most important part of any organization and often times, the most challenging.

    As we prepare for WPIW and our Virtual Balloon Launch video, we wanted to provide a symbol for our Community, so that they can wear something to showcase their support for PI patients and families, in a simple and easy way, and without it costing anyone anything… in order for it to be universal.

    Whether it’s an ice bucket challenge, wearing a particular color, or attending a specific event – it’s nice to see that people are enthusiastically participating in activities to acknowledge groups of people that focus on helping others.

    We decided we would create “badges” of support.  In the simplest way, these showcase that the person wearing it believes in spreading awareness and promoting education about Primary Immunodeficiency. 

    These badges can be placed anywhere… on profile photos, posters, cork boards, and everywhere!  Also, they’re super easy to “get”.  Just right click on the badge of your choice and save the ones you want!

    We can wear this message of support and hope with pride and help advocate for patients with Primary Immunodeficiency.

    Maybe you’re a patient, maybe someone in your family is, or perhaps a friend… or maybe you just believe in equal access to treatment for all… together we’ll stand united and have our voices heard and continue to make a difference… and maybe have a little fun doing it!

    I know I’ll be wearing mine… how will you wear yours?

    http://downloads.info4pi.org/images/someone-i-heart-has-PI-resize-581x579-58e2b209df95e-original     http://downloads.info4pi.org/images/JM---PI-advocate---kristen-resize-578x576-58e2b24d5cc4a-original     http://downloads.info4pi.org/images/i-heart-someone-with-PI-resize-580x577-58e2afde63743-original

  • Global PI Village "Spotlight" Series: Bethany Metzroth

    Name: Bethany Metzroth

    When did you start working with the JMF?  Children’s National started working with the Jeffrey Modell Foundation in 2014. One of our social workers in our Blood and Marrow Transplantation Unit was worried about how we were going to support the basic needs of a family under our care.  She heard great things about the Roots & Wings program so she reached out to Vicki.  Our social worker was amazed by the generosity, kindness, and responsiveness of the Jeffrey Modell Foundation.  A couple months later I had the pleasure of meeting several members of the foundation.  I’ve grown to love each and every one of them.  When we visit with Vicki, Fred, and Vanessa it feels like we’re with family – we’re bound by a passion and commitment to the most important mission of all – children’s health!

    Profession and Location:  Development, Children’s National Health System, Washington, DC

    What inspires you?  The patients and families we care for inspire me!  Kids are so resilient and brave, and their parents are the greatest advocates. They become experts in a disease that was once foreign to them and somehow remain positive in the wake of heartbreaking news.  Their determination and love for one another inspire me, as does the clinical team and researchers who are constantly searching for better treatments.

    What aspect of JMF do you find most special?  Jeffrey Modell Foundation is unique in that it is committed to all aspects of the primary immunodeficiency community – supporting efforts in advocacy, education, research, patient care and support services. JMF recognizes that when a child is sick it affects so many things and the foundation is committed to every child with the disease.

    What’s your favorite JMF memory?  I love sitting around the Jeffrey Modell Foundation conference room and sharing stories with the team.  Vicki and Fred remember every child, every family, and every researcher they’ve met. Their stories inspire our team to do more!  I love our time together.

    Favorite Quote:  “Be the change that you wish to see in the world” – Mahatma Gandhi

    Share a little bit about yourself with the JMF community!  I have worked at Children’s National for over 6 years now.  Before joining Children’s National as an employee I was a patient care volunteer.  The hospital feels like home to me. I grew up in Washington, DC and visited the hospital many times as a young child as my dad works there as a cardiologist. Whenever I am there I am reminded of how fortunate I am. That is why I am devoted to improving the lives of the children we treat.

  • Global PI Village "Spotlight" Series: Dr. Michael Keller

    Name: Michael Keller

    When did you start working with the JMF?  I first began working with the Jeffrey Modell Foundation after receiving a Translational Research Award to support my group’s work in adoptive T-cell immunotherapy to combat viral infections in patients with primary immunodeficiency.  This award was really instrumental in allowing us to begin several of our clinical protocols. 

    Profession and Location:  Pediatric Allergy & Immunology, Children’s National Medical Center, 111 Michigan Ave NW, Washington, DC 20010, Tel 202-476-2140, Fax: 202-476-2280

    What inspires you?  I really enjoy reading biographies, and am most inspired by those who succeed through hard work and intellect, but can also put aside their ego in order to achieve their goals.   Lincoln is a particular hero of mine – I loved “Team of Rivals.”   I have also been extremely blessed to have outstanding mentors over the course of my career – Drs. Rebecca Buckley, Kate Sullivan, Jordan Orange, and Catherine Bollard - and I look up to all of them as models of what successful physician-scientists can accomplish in our field.                    

    What aspect of JMF do you find most special?  I love the dedication of Vicki, Fred, and everyone at the Jeffrey Modell Foundation to improving the lives of children with primary immunodeficiencies.  They are such extraordinary advocates for our patients, both in supporting advances in science and in directly helping our families through programs like Roots and Wings.  

    What’s your favorite JMF memory?  The first time that I heard Vicki and Fred speak about Jeffrey, and about the founding of the Jeffrey Modell Foundation, was at their dedication of the endowed chair position for my mentor, Dr. Jordan Orange.  That was really touching and inspiring. 

    Favorite Quote:  “An investment in knowledge pays the best interest” –Benjamin Franklin

    Share a little bit about yourself with the JMF community!  When I’m not at the hospital or in the lab, I’m either spending time with my wife and son, traveling, or working out.  I’m a lifelong student of several martial arts, which I still practice.  

  • Global PI Village "Spotlight" Series: Pere Soler-Palacin, MD, PhD, MsC

    Name: Pere Soler-Palacin, MD, PhD, MsC

    When did you start working with the JMF?  We started data sharing in 2007 and have been recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies in 2016

    Profession and Location:  Pediatric Immunologist. Head of the Pediatric Infectious Diseases and Immunodeficiencies Unit, Hospital Universitari Vall d'Hebron, Vall d'Hebron Research Institute (VHIR), Assistant Professor, Universitat Autònoma de Barcelona (UAB), Barcelona, Catalonia, Spain.


    What inspires you?  In my daily work, there are two main sources of inspiration. The first is the feeling that nothing can be as important as saving a child’s life. That led me more than 20 years ago to start my studies in Medicine and Pediatrics and remains as a leitmotiv running through my mind.  The second is the personal need to reach the excellence in my daily practice. It does not matter if we are talking about medical care, research or teaching, I always try to do my best since many people are expecting that from me.

    Moreover, my beloved family encourages me to keep on struggling for PI patients and their families.

    What aspect of JMF do you find most special?  The JMF is not a foundation to me, it is a family and I am so proud to be a little part of it. When I first met Vicki and Fred, I realized that they would do anything they could to help patients with PI and their families independently of the place in the world they were living, their gender, sex or economic status. They will always look for you whatever you may need.

    What’s your favorite JMF memory?  I have to admit that my favorite JMF memory comes from the dedication day at our center. It was an incredible mix of feelings. I was so proud to show Vicki, Fred and Vanessa our clinics, all the professionals, the patients and their families… and, at the same, time I got really nervous just thinking that something could have gone wrong. At the end, it was a wonderful day that all the people involved in the care of patients with PI will remember during all their life.

    Favorite Quote:  Doing what you like is Freedom, liking what you do is Happiness

    Share a little bit about yourself with the JMF community!  I have been a pediatrician for almost 15 years working in the field of infectious diseases and primary and secondary immunodeficiencies. I am so lucky to work with a group of incredible professionals at my hospital.  We share our devotion for patients and work as a team to offer our best to patients and their families.

    I have lived in Barcelona, Catalonia, since I was born and I love my little country and its history passionately.  It is not surprising that I love the sea and if I could just ask for a single moment in my life, I would choose sharing a good dinner beside the sea with my family and friends.

    http://downloads.info4pi.org/images/vfm-and-pere-resize-900x1065-5804ff7546c51-originalJMF Co-Founders, Vicki & Fred Modell along with Dr. Pere Soler-Palacin
    at the Jeffrey Modell Diagnostic & Research Center Dedication
    at Hospital Vall d'Hebron in Barcelona, September 20, 2016.

    http://downloads.info4pi.org/images/5a-resize-900x506-5804fe40ac71f-originalPrimary Immunodeficiency Team at Hospital Vall d'Hebron!

  • Guest Blogger: Rachel Bass “Getting Ready for WPIW 2016”

    World Primary Immunodeficiency Week 2016 is rapidly approaching and I am getting very excited for a week of celebrating the Primary Immunodeficiency community!

    It’s amazing to see how WPIW has grown! It’s been three years since its global recognition and implementation, and this week of awareness has become a wonderful and uplifting symbol of hope for the future of patients everywhere!

    Last year was the first time I participated and celebrated WPIW.  I had heard wonderful stories and seen many great pictures from past events, and I was excited to experience it for myself.

    I was truly blown away by the amount of support we received!  There were so many people joining together and embracing the community –physically at JMF Global Balloon Launch sites, as well as through our social media channels by planting Appreciation Garden Flowers, attending the JMF Virtual Party and “Bursting the Bubble” about PI!

    Aligning yourself with such an important cause and message of support and hope is something I’ve found to be very special.

    There’s an expression… “From the outside looking in you could never understand it… and from the inside looking out you could never explain it.”  This perfectly describes my WPIW experience… I never realized how fulfilling participating in an event like this would be, and for someone who is never short on things to say... trying to describe it isn’t as easy as I thought! 

    This will be my second WPIW and now that I’ve experienced the celebrations, I am even more excited for 2016!  I encourage all of you to participate in WPIW in any way you can! You can hold your own event, you can participate in a JMF initiative, or you can spend time with someone you know who is affected by Primary Immunodeficiency.  That’s the best thing about support… the options are infinite and nothing is too small!

    Join in on the fun by selecting a Jeffrey Modell Foundation initiative below, and together let’s make World Primary Immunodeficiency Week 2016 the biggest, best, and brightest we can!
         * Appreciation Garden
         * “Burst the Bubble” About PI


  • Triathlon-ing for a Cause, our dear friend Dina LaVigna

    Every year athletes from all over come to Ventura California to participate in the Dina La Vigna “Breath of Life” Triathlon.  The event was created in the loving memory of Dina LaVigna, a special and dear friend of ours, who lived with Primary Immunodeficiency throughout her short life.

    The mission of the event is to raise funds, and most importantly, to raise awareness and celebrate Dina’s strength, courage, and “glow.”

    Dina’s spirit lives on through the athletes and participants, and her memory is honored by those who receive the help and support generated from this amazing and emotion-driven event.  I encourage you to learn more about this annual event and Dina LaVigna herself, at www.dinatriforlife.com.


  • Guest Blogger: Fred Modell “When I Grow Up…”

    What do YOU want to be when you grow up?


  • Estamos haciendo algo in Latin America; Our trip to LASID 2015!

    http://downloads.info4pi.org/images/lasid-logo-resize-226x126-533edd106459a-originalEstamos haciendo algo in Latin America!

    I have always been motivated by my son Jeffrey’s request to “Do Something!” and the Jeffrey Modell Foundation was created with that intention.

    One of the many ways we help honor his request is to stay involved and informed on all things Primary Immunodeficiency and Immunology.  This includes meeting with physicians and advocates from all over the world who share our commitment to help cure PI worldwide.

    On November 15, Fred and I, along with JMF Executive Director, Vanessa flew to Buenos Aires, Argentina for the 2015 LASID (Latin American Society for Immunodeficiencies) meeting.

    The biennial LASID meeting is the largest Primary Immunodeficiency scientific event in Latin America!  This amazing and beautiful event brings together physicians, researchers, healthcare professionals, and patient advocates, for one common goal – to share the advancements in our understanding of the Immune System, specifically Primary Immunodeficiencies and treatment options.

    To our heartfelt surprise, the conference opened in a very different but very special way, a video tribute honoring Fred, myself, and Jeffrey’s Foundation.  There are no words to adequately express the appreciation and gratitude for this beautiful honor. We were completely surprised when the lights dimmed and the video came on.  Both Fred and I were holding on to each other tight for fear we would be too emotional… which we were, anyway. 

    What we did know before the meetings is that both Fred and I were personally asked to Chair sessions at the YOUNG PHYSICIANS EDUCATION DAY.  Attending these meetings and learning so much about what these young physicians are achieving is so rewarding, but to participate as a Chair alongside brilliant Expert Immunologists is an experience I am truly grateful for.

    These young physicians, many of whom have studied or done research fellowships internationally, have returned to their home country to initiate programs in clinical care, diagnostic laboratories, and research.  We have encouraged many of these young physicians by providing travel grants, fellowships, financial awards, and research funds.  We are constantly impressed with their courage!

    The people of Latin America, who have great passion for their food, wine, language, music, arts, and dance, have the same passion for medicine!

    The conference was attended by some of the most brilliant minds and dedicated souls in Immunology and filled with wonderful and insightful meeting sessions covering many different aspects of Immunology. To be recognized in such amazing ways, among such an exquisite, distinguished and passionate group of people is an honor I will never forget and will cherish forever.

    Since its inception, Jeffrey’s Foundation, in collaboration with many of the LASID attendees have advanced the way people with Primary Immunodeficiency are diagnosed and treated. We have dedicated our lives to helping patients with Primary Immunodeficiency receive the earliest possible diagnosis, and access to meaningful and adequate treatments, which will lead to a better quality of life and even life itself.  To experience and see firsthand how LASID is driven by our same mission is truly moving.

    We are so proud of everything our community has achieved and how far we’ve come, and I know Jeffrey would be proud of how we are fulfilling his request to “do something.”

    From the bottom of my heart, I want to say “muchas gracias” to LASID and all its attendees for making this a most wonderful and memorable event for myself, Fred, and the Jeffrey Modell Foundation.

  • “Doing Something” Special at Children's National in Washington, DC!

    The beginning of the Foundation’s story starts with Jeffrey asking us to “Do Something!”http://downloads.info4pi.org/images/DC-dedication_2-resize-400x600-562015fec3852-original

    You’ve heard our mission before, “to dedicate our efforts to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and newborn screening.”

    The first step in that mission is to identify expert immunologists who share a passion for helping others, especially PI patients and their families.  It is very fulfilling to find these wonderful physicians and work together to establish Jeffrey Modell Research and Diagnostic Centers for them to lead; and we’ve been lucky enough to have multiple locations in the US and around the world!

    I am proud to share that just recently we opened another Center, to be led by a very talented, compassionate, and amazing physician – Dr. Michael Keller, from Children’s National Medical Center in Washington, DC.

    Dr. Keller is a pediatric immunologist and specializes in Immunodeficiencies.  Not only is he a highly respected research physician and the recipient of many prestigious awards – he’s as nice as can be!

    This new Center in Washington, DC provides us with the opportunity to improve the lives of those affected by PI in our Nation’s Capital.

    Fred and I are thrilled that JMF is partnering with Dr. Keller and Children’s National. This is a most welcome addition to the Foundation’s Network and we are so excited, proud, and honored to work alongside him, as we continue to “Do Something” for the PI Community.

    We're happy to share the blog post from Children's National covering this wonderful dedication!

  • Steve Bursley’s “One Tough Ride”

    On Saturday, September 19th, our friend and hero, Steve Bursley, will be embarking on his traditional “One Tough Ride”, dedicated to his son Nicholas who has Primary Immunodeficiency. 

    Steve will compete in a 508-mile nonstop bicycle race – the Silver State 508 in Nevada, which is considered to be one of the toughest endurance challenges around.  Helping promote PI awareness is only half of what Steve does, he’s also an inspiration! “One Tough Ride” encourages everyone, PI patient or not, that you can achieve anything you put your mind to, even if it seems all “uphill”.  

    “This challenge is personal but the impact is global, and I'll be racing for all of the children and adults around the world that battle PI diseases every day!” – Steve Bursley

    You can virtually experience Steve’s bike race as he will be sharing photos and posts live via his Facebook, Twitter, and Instagram accounts all throughout this 508 mile journey!   You can watch coverage of the race via webcast and even watch the actual race unfold using live track to see Steve’s team, the Racing Roosters compete!  

    Steve’s devotion to his son, Nicholas and his passion to bring attention and support to the PI Community is truly inspiring. We are so proud of Steve and this event, and excited for the opportunity to come along for the “ride.”

    Don’t forget to connect and keep up with Steve! Support him and wish a safe “ride.” There are many different channels were you can learn more about his “One Tough Ride” event and his mission to create awareness of Primary Immunodeficiency.

    Steve Bursley, One Tough Ride

    Silver State 508 Event

  • 2015 WPIW JMF Photo Contest Winners!

    World PI Week 2015 was truly magical!  The Global PI Community was truly united by “one voice, one mission” and we are in awe of the dedication, passion, and commitment from countries all over the world!

    Watching how people participated in our simultaneous Balloon Launch is a tradition that will never get old!

    We are happy to announce the winners of our WPIW Balloon Launch Photo Contest! All of the 800 photos we received from all around the world were beautiful and meaningful and helped promote awareness and education about Primary Immunodeficiency.  They were all excellent, and we had a very difficult time choosing the winners.  Thank you to everyone who planned imaginative events to help make World PI Week 2015 amazing!

    The 6 photos below were the ones that inspired us and truly captured our mission of “Hope, Advocacy, and Action”. Several of them, in their profound simplicity, say so much.

    Congratulations and thank you to the compassionate and creative people everywhere who participated!

    Timișoara, Romania


    Reykjavik, Iceland


    Astana City, Kazakhstan


    Cairo, Egypt


    Shanghai, China


    Nablus, Palestine


  • World PI Week 2015

    Wow. World Primary Immunodeficiency Week 2015 has come to a close, and what an amazing and inspiring week it was!

    Thank you, to all of you, who helped make this year so special. Whether it was attending our Virtual Party, participating in a Balloons and Bubbles Launch, helping us “Burst the Bubble” about PI, or contributing to our Appreciation Garden.

    Over the last twenty eight years, Fred and I have watched the advancements in the way people with Primary Immunodeficiency are diagnosed and treated.  And every year Fred and I am more and more amazed at the amount of support our community is shown from all over the world.

    We have watched WPIW grow into an international celebration that truly unites patients, families, friends, physicians, nurses, and healthcare professionals to raise awareness and provide education about PI in order to achieve earliest possible diagnosis.

    WPIW is a celebration of how far our community has come, while also keeping us motivated for the future.  Every year WPIW is so special and there are so many reasons why it is so special and important to us..

    • Together we have and continue to make a difference
    • Together we have and continue to bring awareness around the world
    • Together we empower children, parents, families, friends, educators, nurses, and doctors
    • Together we acquire answers for tomorrow
    • Together we build memories along the way
    • Together we save lives so today’s kids can be tomorrow's future
    • We believe there are no limits and no borders
    • We believe in our community and you believe in us
    • We believe in our mission, and our mission is not complete

    ..But most of all, Jeffrey would have wanted it this way.

    From the bottom of my heart, thank you so much for making WPIW as amazing and special and wonderful as it was.


  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Jose R. Regueiro

    Name: Jose R. Regueiro

    Tell us about how you learned about JMF and World PI Week! I met Vicky and Fred many years ago in Geneva and have followed their incredible efforts to build what JMF now means worldwide, including the World PI Week.

    Profession and Location: I am a Professor of Immunology working in Madrid, Spain, at the Complutense University and the Hospital 12 de Octubre Research Institute. I happen to be the Head of the Department of Immunology there, and also the President of the Spanish Society for Immunology.


    What inspires you? The need to understand primary immunodeficiencies (PID) and how what we learn can in turn help patients and their families, and change our view of the immune system. Every new case is a professional challenge, but I never forget the human factor: I try to think on the patient first.

    What does World PI Week mean to you? It is a time to raise awareness for PID and to celebrate how far we have reached in our understanding of their causes and what that means to patients in terms of prompt diagnosis and treatment.

    What’s your favorite World PI Week memory? Last year we launched balloons with friends, students, colleagues, patients and their families. It was a magic moment, all of us looking upwards in hope of a better future, particularly for underdeveloped countries.

    Favorite Expression: Put an immunologist in your life.

    To Sum Up! My first contact with PID was a patient called Victor back in 1985, who presented with an extremely rare disorder which turned out to be the first T lymphocyte-specific PID to be molecularly characterized (CD3gamma deficiency). Meeting Victor changed my view of Immunology. Thirty years later, I still keep in contact with his family. Along the way I met several top-notch researchers from all over the world, such as Cox Terhorst, Balbino Alarcon, Fred Rosen, Max Cooper, Alain Fischer, Gigi Notarangelo, Chaim Roifman, Wolfgang Schamel and Jean-Laurent Casanova. I feel honoured to be a small part of the PID community, and to be helpful for patients and colleagues from all over the world.

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Andrew Cant

    Name:  Professor Andrew J Cant, BSc, MD, FRCP, FRCPCH

    Tell us about how you learned about JMF and World PI Week!  The Royal Victoria Infirmary is one of 3 Jeffrey Modell Diagnostic and Research Centre for Primary Immunodeficiencies, here in the UK so our frequent contacts meant we were well aware of this important opportunity.

    Profession and Location: Consultant in Paediatric Immunology & Infectious Diseases  / Director of the Children's Bone Marrow Transplant Unit  / Professor of Paediatric Immunology - University of Newcastle / Clinical Senate Chair – NHS Northern England

    What inspires you?  Understanding the biology of PIDs is fascinating and working with children is very rewarding, but when you put these two aspects of medical care together I am completely captivated! It is simply such an amazing privilege to use our rapidly growing knowledge of these diseases to enable children to have normal exciting fulfilled and happy lives when previously they could only expect worsening debility, ill health and for many an early death.

    What does World PI Week mean to you?  Our daily work with PID patients, their families and our network of specialists, is rewarding but challenging.  WPIW encourages us to focus on the goals of our centre and there is a strength in sharing this week promoting PIDs with a global network, knowing collectively we are all championing the same cause.  Through WPIW activities we have been able to raise interest in PID across the north of Britain and Ireland amongst Paediatricians and Physicians.  We feel being part of this unique network ensures 30 million people have closer access to diagnosis and bespoke care for PID.

    What’s your favorite World PI Week memory?  Here in Newcastle we held a networking event as part of World PI Week in 2014. This event brought together doctors and nurses from 6 medical institutions across the north of the UK.  The new concept of bringing together our peers in this way was very exciting as we could discuss puzzling cases in depth and draw in cases and hospitals who had not been involved before. This has enhanced our network of outreach PIC clinics in Scotland, Ireland, Manchester, Leeds and Sheffield so that have a much more mature and robust way to disseminate knowledge and expertise.

    Favorite Quote:  “Together we can do the impossible!”

    To Sum Up!  I have been a doctor for over 35 years and after working in the field of internal medicine and infectious diseases, I “crossed the floor” to paediatrics and immunology some 30 years ago. It has been wonderful to work with a group of patients where you can make such a difference, helping on the “upward slope” to healthy well being. I have always wanted to know the answer to “why”, “what if”, “what would happen if” and “why couldn’t we try this” so I love the mix of looking after patients and trying to find out more about the conditions they suffer from, and better ways of curing them. This is such an exciting time with so many new research findings that make a real difference to patients, so I remain the excited curious little boy at heart!  I live in the far north of England amidst beautiful countryside and close to some spectacular coastline, so it isn’t surprising that I love the outdoors, hiking, walking biking and running. I also greatly enjoy music and history, and am very fond of Scotland where most of my family live.

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Maria Kanariou


    Tell us about how you learned about JMF and World PI Week!

    • “Member” of WHO and IUIS meetings for Primary Immunodeficiency Diseases in the past.
    • “Contact Person” of JMF in Greece
    • IPOPI meetings
    • Medical Director of “ARMONIA” -  Patient Organization of Friends Patients with Primary Immonodeficiencies - Paediatric Immunologogy
    • Friendship with Vicki and Fred Modell !


    Profession and Location: Head Director, Department of Immunology and Histocompatibility, Specialised & Referral Center for Primary Immunodeficiencies - Paediatric Immunology, “Aghia Sophia” Children’s Hospital, Thivon & Papadiamantopoulou Str, 115 27 Athens, Greece (Phones:  +306944675007, +302132013766)

    What inspires you?

    • To understand the function of Immune System order to treat patients with Primary Immonodeficiency aetiologically.
    • The improvement of quality of life of patients’ with Primary Immunodeficiency and their families


    What does World PI Week mean to you?

    • The increase of awareness for early diagnosis of Primary Immunodeficiencies
    • The improvement of quality of life of patients’ with Primary Immunodeficiency and their families.


    What’s your favorite World PI Week memory?  I can speak only for events in Greece and my favorite one was a concert with Symphony Orchestra of Athens in 2011.

    Favorite Expression: Awareness!  Test. Diagnose. Treat.

    To Sum Up! I admire Vicki and Fred. As they say: ”their son,  Jeffrey, changed their lives forever, along with the lives of thousands of people he would never meet”.    I feel member of JMF community and I have memories of many of JMF important scientific symposia.   The celebration of 25th anniversary was the most significant one!

  • Come Take a Look at My Appreciation Garden!

    I’ve always loved flowers; there are so many different kinds, with different colors, shapes, and sizes – just like people!http://downloads.info4pi.org/images/flowers-resize-816x420-55229ac4afa2a-original

    Let’s take the time to honor those who mean so much to us and who have made this year so special.

    Pick a flower, as many as you would like, and write the name of someone you are thankful for in the center and why you’re thankful for them in the petals.

    Print out your flowers and share them our Facebook page, tag us, or email us at info@jmfworld.org and together we can create an Appreciation Garden!  Don’t forget to use the #JMF hashtag.

    Join us, won’t you? Find your flowers here to help grow our garden!

    And now I invite you to take a look at the beginning of my garden, and see who I’m appreciative of, as well as the people who are important to the Jeffrey Modell Foundation team!


  • Global PI Village "Spotlight" Series: WPIW Edition ~ Dr. Liliana Bezrodnik

    Name: Liliana Bezrodnik

    Tell us about how you learned about JMF and World PI Week! When I began to work with the LAGID members I received the information about the excellent job of Vicky and Fred and their help to diffusion of PID and the work about PID and research of immunologist physician.

    An active member of LASID I learned of World PI Week and My team and I work together in my country to do the diffusion about it. 

    Profession and Location: Doctor and Head of Immunology Unit at Ricardo Gutiérrez Children’s Hospital Buenos Aires, Argentina

    What inspires you?  I want to help my patients and their family and to do the diffusion of PID in Argentina because I know exist more PID in my country without diagnosis and their need to do it.

    What does World PI Week mean to you? The opportunity to teach and to do the diffusion of PID.  To also accompany our patients and family so they do not feel alone.

    What’s your favorite World PI Week memory?  The last year was the favorite for me

    Favorite Quote: The PID are important diseases that compromise the health but with the early diagnosis and the treatment they can live in health

    To Sum Up! My team and I work hard to help our patients for their diagnosis and treatment and to do the diffusion of PID in Argentina.  We do the different activity to teach about PID in the medical community and to help the patients and their family to understand about their diseases and the important their receive the treatment.

    You can see our activity in the facebook page and the testimony of the patients: Inmunodeficiencias Primarias en la Argentina. Dra. Bezrodnik y equipo

    In yoube to you can see: "el maravilloso mundo del señor SI". I wrote the story "El señor SI" (señor sistema Inmune)

  • Global PI Village "Spotlight" Series: WPIW Edition ~ Ruth Herrera

    Name: Ruth Herrerahttp://downloads.info4pi.org/images/JMF-Balloons-resize-228x250-533edcec9943c-original

    Tell us about how you learned about JMF and World PI Week!  Ten years ago I started working for Dr. William T. Shearer as his administrative support.  While working in his office on the avalanche of e-mails, I received an e-mail from his very dedicated Allergy and Immunology Clinic team, they were putting together a “JMF Kids Day” and needed volunteers.  Being new and wanting to get involved in “office” activities, I signed up to volunteer.  I didn’t know what this day was about, where it originated or who it was for.  I knew this day was for our patients and help was being requested, which was all I needed to know.  Once I was onboard, I started asking question and was very touched by the answers I was given.  What a beautiful act of kindness and generosity did Fred and Vicki Modell provide for children and families they don't know. I was given the opportunity to participate in a day when a child and parent are worry free for a day, I saw how excited the patients were to attend the outing with their loved ones (and loved health care providers) and they shared their special day with other children that know what each other is going through; what an eye opener!

    Three years ago, the Allergy and Immunology Service was very fortunate to have Dr. Jordan S. Orange join the Texas Children’s Hospital family as the new Service Chief.  He didn’t bring any cold weather with him, instead he brought a Texas size vision on what we can do to improve our patient care in all aspects- clinical, administrative, research and outreach; not only for the Texas Children’s Hospital patients, but to the entire southeast region of Texas and beyond. 

    The Immunology, Allergy and Rheumatology Service celebrated our first World PI Week April 2013. We had a great turn out, Dr. Orange gave some brief remarks, and we released our balloons, a delightful event.  However, the following year, we had bubbles and balloons and cake! All of this brought out the kid in us, we had an even bigger turn out, an ex-patient and current patients! Keep sending the bubbles!

    On Friday, August 23, 2013, we had the honor of being named a Jeffrey Modell Diagnostic and Research Center, where I met Mr. and Mrs. Modell. Unfortunately, I was too caught up in the whirlwind of event details (typical administrative coordinator disease) to stop and tell them how admirable I think their work is.  Thank you Mr. and Mrs. Modell.

    Profession and Location: Senior Administrative Coordinator, Texas Children’s Hospital, Houston, Texas.

    What inspires you? On a professional level, the entire Immunology, Allergy and Rheumatology Service.  On a personal level, my family and faith.

    What does World PI Week mean to you? The opportunity to reach out and educate at least one person on the importance of this mission.

    What’s your favorite World PI Week memory? On a beautiful day in April 2014 the Immunology, Allergy and Rheumatology Service gathered to kick-off, World PI Week. Joining us was a former immunodeficiency patient, now a doctor at Texas Children’s Hospital and a current young patient. What better proof did we have in front of us to see how far we have gotten and what more we can offer our new patients.  Together we all stood, blowing bubbles with smiles on our faces and releasing hope and awareness to the world. 

    Favorite Quote: “Where there is a will, there is a way.”  While this may not be the most inspiring quote, I apply it to my everyday life.  It helps me look past obstacles and focus on solutions.

    To Sum Up! My name is Ruth Herrera, I was born and raised in Omaha, Nebraska.  I moved to Houston 11 years ago and had the good fortunate to work for Dr. Celine Hanson at the Texas Department of Health. One thing led to another and I found myself working at Texas Children’s Hospital for amazing people.

    True to my culture, I’m always surrounded with family.  We travel, shop, and gather frequently.  On my down time, I enjoy reading.

    I wake up every morning thankful for all of my blessings.

  • “What Do You Do with an Idea?”

    When Fred and I decided to establish Jeffrey’s Foundation, we knew it was both a grand idea and a challenge.  We had never met anyone else with Primary Immunodeficiency and the knowledge, support and information networks were less than perfect.  Yet, this is why we knew it was so important to proceed… it was time to “Do Something!”

    Recently, Kobi Yamada’s “What Do You Do with an Idea?” was given to me as a gift, and I have not been able to stop thinking about the message it conveys.

    At the opening of the book, the reader is asked…


    When we allow ourselves to dream, to be inspired, and not give in to intimidation and fear – these dreams can grow into miraculous realities. If we nurture our ideas, they can become larger than we ever expected; there can be an exponential amount of potential and growth!

    Our idea was to create a Foundation where we could help spread awareness, increase education, help make strides in PI research and knowledge, as well as, provide patient support.  This idea to “Do Something” has manifested into a worldwide network of physicians, patient organizations, public service announcements, international educational materials, research programs and so much more!

    We turned our idea into Hope, Advocacy, and Action.

    We are excited to see what the future will bring and how Jeffrey’s Foundation will continue to grow.  We have never and will never stop working towards our dream, and we hope you never give up on yours.

    To acquire Kobi Yamada’s “What Do You Do with an Idea?” click here: http://www.amazon.com/What-Do-You-With-Idea/dp/1938298071

  • Global PI Village "Spotlight" Series: Grant Ginsberg

    Name: Grant Roberts Ginsberg

    When did you join JMF? I joined JMF in July of 2014.http://downloads.info4pi.org/images/Boy-Reaching-for-the-Star-resize-120x174-533edc58223bd-original

    Role: Senior Program Director. My role includes marketing our SPIRIT 2.0 Analyzer, Pharmaceutical outreach, and helping coordinate the Jeffrey Modell Infusion Center project.  

    What inspires you: I had the pleasure of unexpectedly meeting Vicki and Fred Modell this past summer. I was introduced to the Modell’s through a mutual friend, while we were eating out at an Italian restaurant in New York. I immediately connected with Vicki and Fred on both personal and professional levels. Their lifelong journey and story truly resonated with me. I believe that their son Jeffrey chose me to meet Vicki and Fred on that particular night. I keep a picture of Jeffrey at my desk which is a continuous reminder to work as hard as I can, on his behalf. Vicki and Fred have truly inspired me to live for something greater than myself.

    What aspect of JMF do you find most special? The work I do at JMF gives me the most fulfilling feeling at the end of the day. Knowing that I am helping save children’s lives is the most gratifying feeling. The global presence of JMF is truly unbelievable and being relatively new to JMF, I have the utmost respect for Vicki, Fred, and the rest of the JMF family.

    What’s your favorite JMF memory? I love hearing about the stories of children’s lives that have been saved through JMF’s efforts, particularly through Newborn Screening.

    Favorite Quote: “You only live once, but if you do it right, once is enough. “ -Mae West

    To Sum Up! I grew up in Rabat, Morocco and went to college at Indiana University. I love to travel, workout, read, and discuss politics/current events. I am a very easygoing guy.

  • School Nurses: Our “First Line of Defense” Against Primary Immunodeficiency!

    We all remember going to the School Nurse as a child, whether we had a tummy ache or looking for a lollipop.

    However, let us not forget the vital role of a School Nurse.  School Nurses reach 98% of the 50,000,000 students in U.S. public schools, grades K-12. 

    Quite often, School Nurses are the “first line of defense,” in recognizing that these children suffer from repeated infections and missed days at school.  They are the first point of contact when our children aren’t feeling well.

    This is why Jeffrey’s Foundation partnered with the National Association of School Nurses; to help assure earliest possible diagnosis of Primary Immunodeficiency in school children!

    We sent English and Spanish language posters featuring the Immune System and our 10 Warning Signs of PI to approximately 16,000 NASN members!

    Educating School Nurses about the Immune System and the 10 Warning Signs of Primary Immunodeficiency will lead to early and precise diagnosis, appropriate treatment and improved quality of life.

    Now, when a child goes to the Nurses office time and time again, they will be able to recognize symptoms that may be one of the Warning Signs.  This will help children and their families find answers and accurate diagnoses.

    Education leads to greater Awareness; Awareness leads to Diagnosis; Diagnosis leads to appropriate Treatment; Appropriate treatment leads to a better quality of life.  Working with the National Association of School Nurses takes us a one step closer to fulfilling this mission!



  • Guest Blogger: Catherine Jackson "The Awe & Wonder of a Three Year Old Boy…"

    The Awe & Wonder of a Three Year Old Boy…

    Just recently we received a wonderful email surprise. Remember Jared? The young boy who was the first child to be approved through our “Roots & Wings” Program in February 2012! The baby who was screened in Puerto Rico for SCID! The baby who was under Dr. Trudy Small’s care at Memorial Sloan Kettering in New York City! Yes! Him! That wonderful and delightful young boy that we are so proud to have met and continue to see grow. Hearing of all his life updates brings us all such joy.

    Jared continues to live in Puerto Rico with his mom and dad. They visit us here at the JMF office quite often and it’s always a delight. After the holidays we were sent various pictures but wanted to share with the world just a few of how grown-up he is looking recently. It seems his favorite character is Spiderman. (Did you zoom in to take a good look at his Spiderman bike? How cool is that?) Spiderman's creators gave him super strength and agility, and from what we know, Jared, too, has super strength and agility. To be able to live a SCID FREE LIFE… we think that’s POWERFUL! 


  • Global PI Village "Spotlight" Series: Dr. Ridha Barbouche

    Name:  Ridha Barbouche

    When did you start working with the JMF?  Since 2008 at a symposium entitled ‘’PIDs beyond Europe’’ during the ESID meeting which took place in The Netherlands.

    Profession and Location:  M.D., Ph.D. Professor of Medicine at the Medical School, University of Tunis El Manar, Head of Department and Director of Research Laboratory at the Institut Pasteur de Tunis, Tunis, Tunisia

    What inspires you?  To progress in anything I do, including helping provide a better life for patients and their families.

    What aspect of JMF do you find most special?  The opportunity to share experiences and knowledge with a fantastic community of colleagues, facilitated by brilliant hosts and friends of everyone.

    What’s your favorite JMF memory?  The contribution of Vicki and Fred to the second ASID meeting in Hammamet, Tunisia which translated their permanent commitment to advance PIDs cause everywhere.

    Favorite Quote:  ‘’There is hope…always!’’

    To Sum Up!  I grew up in the small island of Jerba in Southern Tunisia, I think that the marvelous Mediterranean sea around me –beautiful and mysterious- had a major impact since then on my permanent quest to better discover, understand and appreciate people and things around me and beyond.

  • Reflection.

    The beginning of a new year is upon us, and as always, it’s a time of reflection… where have we been, where are we now, and where are we going..?

    2014 has been a remarkably successful year for Jeffrey’s Foundation, and I am so proud of all that has been accomplished!

    The Jeffrey Modell Centers Network now includes more than 600 physicians at 248 academic institutions, in 206 cities, 78 countries, spanning 6 continents and we’re still growing!

    Nine states, including Illinois, Maine, Nebraska, New Jersey, New Mexico, Oregon, Rhode Island, West Virginia, and Wyoming, as well as the District of Columbia, have implemented mandatory Newborn Screening for SCID, bringing the total to 26 states!

    We have also significantly invested in research this year.  The Translational Research Program awarded five grants, our Specific Defect Research Program awarded two grants, and our very first CHILDREN!® program launched, and we awarded our first grant!

    This year we have also made strides in the way we have further strengthened and spread our mission through our Scientific Publishings; An analysis and decision tool to measure cost benefit of newborn screening for severe combined immunodeficiency (SCID) and related T-cell lymphopenia., and Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery.

    JMF “KIDS DAYS”, days of sharing, caring, and hope, create events outside of the hospital, where patients, their families, and the physicians and nurses can relax and enjoy fun activities, while also connecting with each other and often making friendships that last forever.  This year we were able to host 15 “KIDS DAYS” all over the country!

    WIN, WinMD, and WinRN, have also been able to help patient organizations, physicians, and nurses to provide encouragement, assistance in developing awareness and educational programs, patient support, advocacy for equal access to care and appropriate treatments, and travel to medical meetings worldwide.  This year we were ecstatic to sponsor 53 grant programs!

    One of the programs closest to my heart, Roots & Wings, was able to assist 11 babies and their families, with funding for travel and housing while receiving stem cell transplants.  I am filled with so much joy to help these families through this heart-wrenching time, arrange for their children to receive the proper treatment and the opportunity for a full and healthy life, and at the same time, ease the burden of financial worries.

    This year we also established a new community oriented campaign on our social channels.  We asked friends and family to help spread awareness, education, and advocacy by helping us “Burst the Bubble” About Primary Immunodeficiency. I love the creativity used to make the “bubbles” and look forward to receiving more photos in the future, especially during World PI Week as we host our “Balloons and Bubbles” launch worldwide!

    We have also had a very strong bond with our community.  Your voice has become stronger and I am so touched by the beautiful things you have shared with us.  You have allowed us into your lives and for this we are sincerely honored.

    Jeffrey’s request to “do something” continues to ignite a fire inside of me, and I am so thankful for all of you who have supported us and our mission to help better the lives of those affected by Primary Immunodeficiency.  We still have a long way to go, with so much more to “do”.

    Join us in our mission of hope, advocacy, and action, and together let’s make 2015 the best year ever!

  • Learning

    Learning.  It’s one of those things that happen whether or not we want to or even realize it.  It happens all around us, and never ends.

    Every day you can learn something new, whether it’s the name of a new animal, a new neighbor, or a new song.

    Then there’s the learning you wish you never learned at all, the name of a disease affecting a loved one.

    Sometimes, while it can lead to heartache it can also lead to fascinating information. Through my PI journey, I certainly have learned more than I could have ever imagined.

    Of all the things I have been able to achieve with Jeffrey’s Foundation, one of the proudest moments was when two dear friends, Dr. Etzioni and Dr. Ochs, asked me to contribute to their book, Primary Immunodeficiency Disorders: A Historic and Scientific Perspective.

    I am now going to be able to share all that I have learned with thousands of people; my experiences and Jeffrey’s story will be preserved so that others can benefit from what I’ve learned. It feels good to be able to help others who are at different points along their journey.

    I present to you, Chapter 7: Jeffrey Asked Us to “Do Something!” Our Journey, and urge you to never stop learning… or listening.


    Primary Immunodeficiency Disorders: A Historic and Scientific Perspective

    Chapter 7: Jeffrey Asked Us to “Do Something!” Our Journey

  • Global PI Village "Spotlight" Series: PJ Maglione, MD, PhD

    Name: PJ Maglione, MD, PhDhttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF? I began working with the JMF at the start of Allergy/Immunology Fellowship at Mount Sinai in July 2011. The JMF has generously supported fellows-in-training at Mount Sinai for many years so that they receive top-notch training in clinical care and research in the field of primary immunodeficiencies. Now that I am at my early stages as an academic faculty member, the JMF has been absolutely pivotal in allowing me to have protected time to continue my research endeavors and apply for grants as an early career investigator.

    Profession and Location: Instructor, Division of Clinical Immunology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY

    What inspires you? People who are passionate about what they do, in work and play. It is so easy to get into a routine, get by with the minimum, and let life and opportunities pass you by. When I see those who are really trying to be the best at what do professionally, whatever it may be, and try to get the most out of life every day, it wakes me up out of that easy routine and reminds me to try to be one of those people myself.

    What aspect of JMF do you find most special? Speaking from experience, I can say that I think the JMF’s commitment to fellows-in-training is quite special. Not only has the JMF supported our fellowship training program at Mount Sinai for many years, but it has also made available research and travel grants to those who really need it. These grants are absolutely vital for fellows-in-training and early career faculty who have limited financial support to conduct research or attend conferences.

    What’s your favorite JMF memory? I actually had the opportunity to sit next to Rochelle Hirschhorn at dinner at a JMF event this past year. Not only did she discover ADA deficiency, a type of severe combined immunodeficiency, but she also predicted that it could be treated with gene therapy, which we now have increasing optimism may become a reality for many children with this form of primary immunodeficiency. She is a real giant in the field of immunology and truly an inspiration when you consider that this work was done during a time when women physician-scientists were not common or eagerly accepted. I cherish the conversation I had with that night Dr. Hisrchhorn very much.

    Favorite Quote: This might be silly because it is a quote from television, but one quote by Jean-Luc Picard (Captain of the Enterprise from Star Trek the Next Generation!), “Things are only impossible until they are not,” has always stuck with me. These words come into my head often when faced with difficult clinical or research scenarios that seem hopeless. We should believe that we will make new therapies and treatments for diseases that seem impossible to treat, because that’s all we have ever done. Similarly, when we think about research we have to remember to not be afraid to challenge scientific dogmas, because that is the only way we’ve ever moved forward. Jean Luc-Picard was an inspiring guy!

    To Sum Up! I’ve had a longstanding interest in immunology, ever since I was introduced to it in high school biology class. I was so enamored with the topic that I picked a college because it had an undergraduate immunology major and wrote a research paper on B cells in the first semester of my freshman year. I pursued an MD/PhD because I thought it would give me the best chance to learn all aspects of immunology, both basic science and clinical medicine, and met with my current clinical and research mentor, Charlotte Cunningham-Rundles, years before I started fellowship in clinical immunology. I have been pursuing a career in immunology for quite a long time. It is so exciting to have finally gotten this far.

  • Global PI Village "Spotlight" Series: Dr. Chaim Roifman

    Name:  Chaim M Roifmanhttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF? 1996

    Profession and Location: Director, Canadian Center for Primary Immunodeficiency | Director, Immunology Specialty Lab | Director, Fellowship Training Program in Immunology/Allergy | Senior Scientist, Research Institute | Professor of Paediatrics and Immunology, University of Toronto | The Hospital for Sick Children, 555 University Ave.  Rm7277Elm, Toronto, ON. M5G1X8

    What inspires you? Finding cures for PID (complexity of human body).

    What aspect of JMF do you find most special? A charity that single handedly transformed the field of Primary Immunodeficiency into a scientific and educational powerhouse for the benefit of individuals afflicted with immunodeficiency.

    What’s your favorite JMF memory? The inception of the JMF Network

    Favorite Expression: How can I help you?

    To Sum Up! First and foremost, I am a loving and devoted partner to my wife Perach; proud father to Idan, Rona and Maian; and a complete voluntary prisoner to my gorgeous grandchildren. I am a clinician-scientist-educator and advocate for PID. I created, or helped create 7 (inter)national organizations promoting PID research and awareness. I conduct research into the molecular basis of PID, and signal transduction in lymphocytes. I have improved outcome of bone marrow transplantation in severe combined immunodeficiency, defined dosing and new indications for IVIG, and developed novel anti-cancer agents. I am a recipient of numerous awards including the E Mead Johnson award, the Henry Friesen Award, and the Donald and Audrey Campbell Chair. I hold 142 patents, have authored over 300 peer-reviewed articles in high impact journals like Cell, Nature, New England Journal of Medicine and JAMA, and attained multiple grants from agencies such as NCI, CIHR, OCRN, NIH, and others. I am fortunate to be supported by scientists in my laboratory, close colleagues and friends, and very proud of the achievements of my students. I am also lucky to be presented with the rare opportunity of disseminating scientific information related to PID as editor in Chief of LymphoSign Journal.

  • Global PI Village "Spotlight" Series: Dr. Juan Aldave

    Name: Juan Carlos Aldavehttp://downloads.info4pi.org/images/Doctor-resize-92x250-533edc767dffe-original

    When did you start working with the JMF?  On December 2011 I evaluated a 2-month-old girl with severe mucocutaneous candidiasis. Her name was Sami Toro. At that time my career in PID was not yet initiated, so I did not know how to help the baby. Then, I contacted Vicki Modell by email. She suggested me to contact Dr. Antonio Condino, who referred me to Dr. Jacinta Bustamante, Dr. Anne Puel and Dr. Jean-Laurent Casanova (Paris, France). Some months later, they found a gain-of-funcion STAT1 mutation. This patient settled the initiation of our PID work and my PID career. JMF had an essential participation in this wonderful story.

    Profession and Location: Medical Doctor, Allergist and Clinical Immunologist, Hospital Nacional Edgardo Rebagiati Martins, Lima, Peru

    What inspires you?  The smile of our little patients.  The trust and hope of their parents.

    The support of JMF and every professor that has helped us for genetic and molecular studies (Dr. Luigi Notarangelo, Dr. Steven Holland, Dr. Troy Torgerson, Dr. Hans Ochs, Dr. Talal Chatila, Dr. Jordan Orange, Dr. Lisa Forbes, Dr. James Lupski, Dr. Anne Durandy, Dr. Jean-Laurent Casanova, Dr. Jacinta Bustamante, Dr.  Anne Puel, Dr. Bodo Grimbacher, Dr. Antonio Condino, Dr. Shigeaki Nonoyama, Dr. Bobby Gaspar, Dr. Amos Etzioni, Dr. Jean Donadieu, Dr. Fabian Hauck, Dr. Klaus Warnatz, Dr. Millo Seppanen, Dr. Kate Sullivan, Dr. Francisco Bonilla, Dr. James Verbski, and their wonderful teams).

    What aspect of JMF do you find most special?  Their love to PID patients.  Their wonderful organization.

    What’s your favorite JMF memory?  The first e-mail that Vicki sent me, with the precise counsel for us to help Sami Toro. This baby started my PID career.

    Favorite Expression:  Every day is a new journey to improve PID work in Peru.

    To Sum Up!  I am honored to be part of the JMF team. It is a privilege to receive such support. The improvement of PID children makes me feel happy and useful. I love teaching about Immunology in a simple and funny way. I love playing soccer. My family (parents, brother and sister) gives me a lot of support. I strongly believe in God’s love and power.

  • Global PI Village "Spotlight" Series: Jessica Quinn

    Name: Jessica Quinn http://downloads.info4pi.org/images/Beakers-resize-248x229-533edc5534af4-original

    When did you join JMF? March 2014

    Role: Scientific Director – Oversight of all things “science” at the Foundation. This involves global collaboration to coordinate our 3 Research Programs, publications in scientific journals, JMF’s annual Physician Survey, our current poliovirus excretion prevalence study (for which we have partnered with the Bill and Melinda Gates Foundation, the Task Force for Global Health, the CDC, and Global Polio Lab Network), and any/all additional projects that may arise!

    What inspires you? Passion, genuine kindness, and resilience.

    What aspect of JMF do you find most special? The passion behind the Foundation and the breadth of its reach. JMF’s history of achievements is remarkable, as is its goals for the future. I find contentment in the fact that no matter the task at hand, it all comes back to a single, meaningful mission: improve and save lives. This makes me proud to come to work every day.

    What’s your favorite JMF memory? The WPIW celebration at JMF Headquarters in NYC in April of 2014. At that point, I’d been working here for only 1 month and was still learning the ins and outs of the Foundation. That day I was lucky enough to meet Jared, the last baby screened in a Newborn Screening pilot program in Puerto Rico who happened to have SCID. Because he was screened as a newborn, Jared was able to receive a bone marrow transplant, which saved his life. Jared was able to be with us that day, to run around and play, because of a simple test. This put things in perspective for me and solidified the already poignant mission of the Foundation in my heart and mind.

    Favorite Quote: “Never touch anything with half of your heart” and “If I look at the mass I will never act. If I look at the one, I will.”

    To Sum Up! I’m a daughter/sister/aunt/friend/woman with a passion for science, public health, and helping others however I’m able. I love to workout, travel, read, and cuddle with my dog, Putty!

  • Global PI Village "Spotlight" Series: Jo Ann Fortunato

    Name: Jo Ann Fortunato

    When did you join JMF? June 15, 2002

    Role: Chief Financial Officer. I am responsible for the day to day financial coordination and reporting on the financial activities of the Foundation.


    What inspires you? Passion, compassion and acts of kindness.  Our Roots and Wings Program brings all of that together. What can be more inspiring than helping to save the life of a child?

    What aspect of JMF do you find most special? The ability to see the realization of Fred and Vicki’s visions and dreams. As an example, when I first interviewed at JMF 13 years ago, I asked “what does the Foundation hope to be doing 5 years from now”.  The answer was Newborn Screening.  With much hard work and passion on their part, I have had the privilege of watching that dream come true.  Even more special is hearing the success stories of the children whose lives have been saved because of it.

    What’s your favorite JMF memory? I have so many over the years it would be hard to pick just one.  Meeting the families and the doctors who care for them at our New York City KIDs Days and spending time with them is special. Watching the kids having a great time and forgetting about PI for just a little while personalizes the work of The Foundation for me.

    Favorite Quote: “Start each day with a grateful heart”  ~ unknown

    To Sum Up! My favorite thing to do is to cook a good meal for my friends and family. I enjoy growing a herb garden each summer and incorporating the herbs into the dishes I cook.  I love to garden and look forward to watching the flowers emerge each spring, coloring the landscape.

  • Guest Blogger: Jason Shuman "Three Lessons the Modell’s Taught Me"

    Three Lessons the Modell’s Taught Me

    After being diagnosed with Primary Immune Deficiency at 6 months of age in 1991, my parents were uncertain about what the future had in store for me. However, after meeting Fred and Vicki, and getting involved with the Jeffrey Modell Foundation, my course in life became well defined.

    From Center Dedications openings at hospitals to Spring Ahead Galas, I’ve had the incredible opportunity of becoming close with the Modell’s over the past 15 years. Acting as another set of Grandparent’s to me, Fred and Vicki helped me learn a fair share of life lessons along the way.

    From a kid who was labeled “bubble boy”, to now a first time entrepreneur, I’ve decided to highlight 3 of the most important lessons that I learned from Vicki and Fred.

    Be Confident

    Whether it’s in business or with your health, you must be confident in the way you go about doing things. Napoleon Hill once said that, “the starting point of all achievement is desire,” and I believe that this pertains to PI patients in many ways.

    On a personal level, you should know that you can go out and live the life that you want. For example, over the past four years I’ve traveled to 4 continents, joined a fraternity, started a company and lived over 3,000 miles away from home.

    Professionally, you have no need to be nervous. I guarantee that you’ve most likely faced more adversity than anyone else out in the workforce. Therefore, employers will look at your PI as an asset vs a liability, based purely on the fact that you’ve already overcome great odds.

    Follow Your Dreams

    As a Millennial generation we tend to focus on enjoying what we do. Therefore, I strongly urge you to identify what your passion is in life and then go after it. Set goals and deadlines, find mentors, and most of all, don’t be afraid to put yourself out there.

    Nearly two years ago I realized that my passion in life was to inspire others to have the confidence to follow their dreams. This passion came from the incredible opportunities and mindset that Fred and Vicki bestowed upon me. As a result, I launched my first company, an eCommerce casual men’s footwear brand named Category Five, and I haven’t looked back.

    Confucius once said “Choose a job you love, and you will never have to work a day in your life.” Live by this quote.

    Help Others

    Pay it forward. It’s plain and simple. Vicki and Fred have touched the lives of so many patients and families that it’s impossible to count. As the younger generation, we have been lucky enough to reap the benefits, and it’s our job to make sure that their legacy lives on every day of our lives.

    The strength, courage and overall zest for life that Vicki and Fred have exemplified since Day 1, is something for us all to look up to.

    Finally, while they’ve always pushed me to be confident, follow my dreams and help others, the reality is that they’ve taught me so much more than that. However, what all these lessons have added up to is the fact that Vicki and Fred don’t just want children with PI to live “normal lives”, they want us to live extraordinary ones!

  • Dr. Shereen Reda

    For the last 27 years, JMF has advocated for Primary Immunodeficiency and accomplished so much to be proud of, mandatory NBS in several US states, discovering new genes, building centers around the globe, and so much more.

    One moment in which I was particularly proud of our community was this past World Primary Immunodeficiency Week.  The Jeffrey Modell Foundation held its annual photo contest, where JMF centers send in pictures of their Balloon Launch Tribute, with their own creative personalized touches.  The first place winner receives funds to create a “feel good” event for their current patients and their families.  In the past, people have used the funds to throw parties, or educational seminars. The first place winner also receives a grant award to commend their hard work and dedication to their patients.

    However, this year, winner Dr. Shereen Reda, from Ain Shams University in Cairo, Egypt, did something very special. She obtained IVIG for patients in which treatment was a financial hardship. She worked tirelessly to receive additional IVIG, including forgoing her personal prize, in order to further stretch the reach of her winnings and spreading her compassion.

    This gesture, completely selfless in nature, is the epitome of what JMF stands for, going above and beyond to help others in need.  It’s moments like these that truly inspire me, for not only are we helping patients and their families, but knowing we have an amazing network of passionate and caring doctors and nurses who share our dream of one day curing PI worldwide – and for that I couldn’t be prouder.


    Dr. Shereen Reda’s winning photo entries.


  • Community

    Some people think of a community in its physical sense, that it is proximity that defines it. However, I like to believe that community is more about how close your heart is to something.

    There are many different kinds of communities with different beliefs and motives and focuses, and they are all special in their own way.  There’s a closeness that comes from being a part of a group who’s fighting for what you’re fighting for, who believes in what you believe. 

    I especially feel that way towards the JMF community. We are fortunate enough to have friends all over the world; in different time zones, continents and hemispheres. We may not be in the same location, but we all feel strongly about the same thing – the importance of educating and spreading awareness about Primary Immunodeficiency, to produce more meaningful treatments and fund important research to find more cures.

    The first part of the word community comes from communal, meaning sharing and for all.  The second part of the word, unity, is about standing tall together. I’m proud that Fred and I have been able to encourage supporters of Jeffrey’s Foundation to be undivided, steadfast and strong.

    There are people within our community who have been with us a long time and others who have just joined.  But the closeness is always there. It is this closeness that inspires me to believe that, together, our community can and will make a profound difference in so many precious lives and achieve our goal to cure PI worldwide.

  • “Doing Something” in Oslo, Norway

    I have long been driven and motivated by my son Jeffrey’s, request to “Do Something!” and JMF was created with the intention to do so.

    Part of our effort to help cure Primary Immunodeficiency has been the founding of Jeffrey Modell Research and Diagnostic Centers, which along with major academic teaching hospitals, provide a place where patients can go for expert care. With well over 200 different locations, JMF has created a one of a kind community that reaches people in all corners of the world.

    Most recently, we have been fortunate to spread our mission and continue to “do something” for others affected by Primary Immunodeficiency in Oslo, Norway.  On Wednesday, June 18, JMF opened the JMF Research and Diagnostic Center at Oslo University Hospital.  Led by our good friend, and excellent immunologist, Dr. Tore Abrahamsen, the newest addition to our JMF Network will provide a setting for excellent care, precise diagnosis, state of the art research and access to treatment options for patients affected by Primary Immunodeficiency.

    Over the last twenty seven years, we have advanced the way people with Primary Immunodeficiency are diagnosed and treated, and I know Jeffrey would be proud of all the something’s we do.

  • Our Trip to Sweden

    Last month, Fred and I travelled to Stockholm, Sweden.

    We were there to attend Frontiers in Immunology 2014, at the Nobel Forum, an invitation only meeting for the world leading physicians and scientists in Immunology. Those in attendance were Immunologists performing cutting-edge research, in all areas of Immunology, including cancer, diabetes, autoimmune diseases and Primary Immunodeficiency.

    This three day event brought the brightest and most passionate minds in the field of Immunology together for powerful presentations, meaningful conversations and extraordinary educational panels. Nobel Laureate, Dr. David Baltimore, who won the prize for his discoveries concerning the interaction between tumor viruses and the genetic material of the cell, delivered an inspiring Keynote Address.

    Since 1901, the Nobel Prize has been regarded as one of the most prestigious awards in the world. The Immunology community has been blessed with 34 individual winners, an impressive feat to say the least!

    Our trip to Sweden contributed to our mission of raising awareness and spreading education about these disorders; in order to one day reach our goal of curing Primary Immunodeficiencies.


  • my inspiration, my words

    I would like to warmly and personally welcome you to the Jeffrey Modell Foundation’s Global PI Village blog, “my inspiration, my words.” For some time now, we have been thinking about recreating our website. We understand the importance of the data and medical information, but it is about much more than the statistics. It’s about growing a community and bringing people together across states, nations, and even the globe. It’s a home in which our community can gather; a warm, supportive place. It’s a platform for patients and their families to unite and seek answers from both the Foundation and each other; answers that for so many have taken far too long to find; answers to questions that can provide clarity and hope. We are a second family that is here for you when the going gets tough and the road takes an unexpected turn.

    Today I am here to share my story with you, my inspiration, my words, with the hope that each and every one of you will feel that you can do the same. Today is special, not only because it is the launch of a new website, but because it is the bonding of a community that no ocean or border can separate. My belief is that in order to create this bond, it is to tell you all who I am and how I got to where I am today.

    My husband, Fred and I created the Jeffrey Modell Foundation. It was not founded in memory of our son’s death, but rather in celebration of his remarkable life, and to save lives… the lives of babies born today, those yet to be born, and in memory of those for whom science and medicine had not caught up. We accept the reality that science and discovery did not come in time to save Jeffrey, but we are dedicated and committed to saving others. Jeffrey never knew how he would change not only our lives but also the lives of many thousands of children that he would never meet.

    And our journey began in 1987, building our Foundation from the ground up. Since then, we have circled the globe from Shanghai to Sao Paulo, from Minnesota to Morocco, from Tennessee to Tunisia, from Argentina to Australia, from New York to the Netherlands and all that’s in between. The work of the Foundation has taken us to major academic teaching hospitals throughout the United States, Canada, Europe, Eastern Europe, the Middle East, Latin America, Asia, and Africa.

    More than thirty years later, we now have 821 Expert Physicians in our Jeffrey Modell Centers Network, working at 379 academic teaching hospitals, serving 294 cities in 86 countries, and spanning 6 continents. There are now more than 150 Jeffrey Modell Diagnostic and Research Centers throughout the world.

    No matter which country we are in, there is one constant that all of these places have in common: so many children and adults suffering with chronic and recurring infections go undiagnosed. These disorders keep them from enjoying a full life. Their illnesses interrupt their activities, detour their plans, and shatter their dreams. We have met so many of these patients as we travel throughout the world. The stories are similar, the disappointments are the same, and it’s time for a change.

    Our mission is to reach out to these patients through comprehensive programs of physician education and public awareness to ultimately give each and every child a chance to shine, to learn, and to provide them with hope for normal and healthy lives, and bright futures.

    Hope is possible because of the brilliance and compassion of the physicians, the resolve and dedication of the researchers, the perseverance of the quiet, the unsung heroes working days and nights in their labs, the bravery and courage of the families, the vision and constant support of our donors, and most of all, the patients who inspire us, propel us and compel us to continue on our incredible journey.

    We are more dedicated to our mission than ever. Our motivation to find cures grows with each and every passing day. We are devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures—through clinical and basic research, physician education, patient support, advocacy, public awareness, and newborn screening.

    So, with all of that said, I am so thrilled that we can launch such a unique platform for self-expression, helpful discussions, and to connect families and patients with PI from around the world. We will provide answers, we will provide assistance to guide people in the right direction, and we will provide compassion, support, and hope! The Jeffrey Modell Foundation stands for Hope, Advocacy & Action! And today, with the launch of our Global PI Village, we will continue to provide hope, we will continue to advocate for our community, and we will always take action to provide a better place for our patients with Primary Immunodeficiency.

    I look forward to getting to know each and every one of you. Welcome to our neighborhood!

    With hope for our cause,

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