Notes & Messages

• "I cried when I found your web site! I have been searching the Internet for I don't know how long, looking for a support group and ongoing information on immune deficiency. My child is almost six years old and has been battling with immune deficiency all her life, although it took me about 4 years to get a diagnosis, which I still believe is incomplete. I wish I had known you were here earlier, but now I feel like I've finally found someone to talk to. Thank you so much. You have touched three lives, mine, my daughter, and my other child."
• "I am writing this letter in order to thank all of the people that assisted me through the hotline...My 12 year old daughter has had medical problems from birth and her symptoms could be taken directly from your 10 Warning Signs Poster. Our local doctors weren't sure how to diagnose or treat her, and many would insinuate or state psychological problems (hers or ours)...Through the Hotline, our daughter was re-evaluated...finally, action and belief. The Jeffrey Modell Foundation educational programs are very desperately needed."
• "Employers just don't understand and when I've tried to tell them what my child has, they don't get it because no one knows about this. It's basically a nameless condition because the general public has never heard of it before. I am taking the Foundations brochures to my pediatrician so she can share them with other parents. I just know there are other children out there like ours who are going undiagnosed."
• "I am so relieved to have someone to talk to about all of this. My own family doesn't even listen anymore."
• "I really have no family support. They think I'm nuts because I'm so protective of my daughter because in their minds she's just sick a lot. They don't see this as a potentially life threatening condition, but I do. We've already faced sepsis twice this summer alone."
• "My son has SCID/ADA and I'm having trouble getting my local media to tell his story and raise awareness on this disease."
• "You have shed a beam of light in a completely darkened room. But that small beam of light is my anchor of hope. The hope that one day someone will tell me whatÕs wrong with my little boy."
• "I am forever grateful for your efforts and care, which are responsible for building up the self-esteem of my daughter. I thank and commend you for the work you are doing, the encouragement you are bringing and the love you share."
• "Until recently, I had never met any other parent of a child with an immunodeficiency problem. Besides my daughter, who is 26 and has a severe combined immunodeficiency, two daughters of one of my law partners have recently been diagnosed as having severe combined immunodeficiencies."
• "I cried to find that there were others that had this disorder."
• "It is difficult to describe the feelings that I had realizing that someone else is going through what our family has struggled with for 14 years. It is uplifting to know that there is someone else somewhere who is searching for answers like we are."
• "Thank you for your informative and stirring presentation. Within a few days the Upper Midwest Immunology Network was formed. It is certainly an exciting time for us. We want to thank you for sharing your insights, enthusiasm and commitment."
• "I appreciate your work on immune deficiencies. My son has selective IgA Deficiency and has trouble receiving appropriate treatment for his many infections. Sinus infections tend to be the most troublesome because we are unaware of any protective treatment for these infections. How can I convince the medical director of the reality of IgA Deficiency? I appreciate all of your help."
• "Thank you for your help for this family. I am sure that they appreciated knowing that another set of parents was with them. I am personally very touched by your unhesitating support of families in need."
• "I want to add my voice to those of my colleagues around the country in thanking you for taking the initiative in organizing a network of support groups to help other families who find themselves "all alone" in dealing with primary immunodeficiencies."
• "Through the generous support of the Jeffrey Modell Foundation we were able to reach a large number of primary care physicians and make them more cognizant of primary immunodeficiency disorders and the role of the clinical immunologist in their management."

National Hotline 1-800-JEFF-844     info@jmfworld.org

JMF UPDATE is published by the Jeffrey Modell Foundation, Inc., A non-profit Research Foundation. The mission of the JMF includes Research, Physician Education, Patient Support, and Public Awareness. Address all inquiries to the Jeffrey Modell Foundation, Inc., 43 West 47th Street, New York, NY 10036 or call (212) 575-1122. Copyright 2002, The Jeffrey Modell Foundation. All rights reserved.