The Center serves as a referral resource for diagnosis and treatment of primary immune deficiency (PID) diseases. Physician and school nurse education and public awareness campaigns are conducted by the Center to achieve the goal of reaching the estimated 50% of patients with primary immune deficiency diseases who currently go undiagnosed.
The Center also serves as a source of expertise in the new FDA-approved subcutaneous delivery system for immunoglobulins. That procedure was initially developed by Dr. Berger, and University Hospitals Rainbow Babies & Children’s Hospital served as one of the sites for the clinical trials which led to FDA approval of this therapy. Patients and physicians can learn more about this alternative to intravenous immunoglobulins (IGIV) treatment by contacting the Center at 216-844-3237.
The Center can also put patients with PID diseases in contact with the patient support groups and additional sources of information. Both adults and children are seen by Center physicians at Landerbrook, Westlake and Strongsville offices. IGIV infusions are also given at those sites.
The Jeffrey Modell Foundation
Jeffrey Modell was a sweet, cheerful, outgoing kid. He was a good student, played tennis, basketball, and loved camping. He went to rock concerts and had a girlfriend. He was a lot like every other boy his age, except Jeffrey got sick very often.
Jeffrey's parents took him to the best doctors at the most prestigious hospitals for diagnosis and treatment. His life was filled with normal, happy times, but was frequently disrupted with sudden high fevers, bronchitis, sinusitis and other infections, leading to extended periods on medication and lengthy hospital stays. Plans for fun activities were made in spite of the strong possibility that Jeffrey might be too sick to attend. Even periods of good health were strained with the ever-present threat of sudden illness.
Jeffrey longed for a normal life, or even a disease that people had heard of before. Two decades ago, no one knew very much about Primary Immunodeficiencies. They were considered so rare, that many doctors knew too little about them and had even fewer treatment options. Lay people had never heard of it. It was not at the top of many research agendas.
Jeffrey endured the very real hardships of not only his physical illness, but also the social and emotional distress that often accompanies PI. At 15 years old, his condition overwhelmed him and took his life. Inspired by both his courage and his optimism, it is in this spirit that the Jeffrey Modell Foundation was created.
The Jeffrey Modell Foundation was established by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of a Primary Immunodeficiency. The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of Primary Immunodeficiencies.