New Hope for Children with Primary Immunodeficiency Disorders

Thanks to Vicki and Fred Modell and the Jeffrey Modell Foundation, Children’s National was recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies at a ribbon-cutting ceremony on Sept. 29. The Modells established the foundation in memory of their son, Jeffrey, who died at the age of 15 from complications of Primary Immunodeficiency (PI). The foundation has named and funded 125 Jeffrey Modell Diagnostic and Research Centers around the world, with the goal of supporting those with Primary Immunodeficiency, a group of more than 250 disorders, in which part of the body’s immune system is missing or functions improperly.

“We at Children’s National are extremely grateful to be recognized as a Jeffrey Modell Diagnostic and Research Center,” said Dr. Michael Keller, immunologist and assistant professor in the Division of Allergy and Immunology. “We have always been extremely committed to the diagnosis and treatment of patients with Primary Immunodeficiencies, and to be placed alongside the world-class institutions in the Jeffrey Modell Centers Network is truly humbling.” Children’s National will expand its work to ensure that children with PI are identified and receive the best possible care. This includes supporting the rollout of newborn screening for Severe Combined Immunodeficiency in the region, and collaborating with colleagues at the National Institutes of Health and other top-tier institutions so that cutting-edge diagnostics are available to more people. As a Jeffrey Modell Center, Children’s National will also increase awareness about PI by working to educate residents, fellows, and medical peers.

In addition, Dr. Catherine Bollard, director of the Program for Cell Enhancement and Technologies for Immunotherapy and director of the Immunology Initiative at the Sheikh Zayed Institute for Pediatric Surgical Innovation, will work to improve the availability and efficacy of antiviral T-cell therapies and other novel treatments, with the goal of giving children with PI the best chance at a normal life.

“Jeffrey never knew how he would change our lives and the lives of many thousands of children he would never meet,” said Vicki and Fred Modell. “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.” Today, the Jeffrey Modell Centers Network includes 600 expert physicians, at 250 academic teaching hospitals, serving 206 cities, 80 countries, and spanning 6 continents. More than 99 new genes have been discovered at Jeffrey Modell Centers in the past three years. Since the Modells began their journey in 1987, they have contributed to extraordinary medical advances in screening, diagnosis, treatment, bone marrow transplantation, and gene therapy.