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St. Louis Children’s Hospital is now recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies. This was made possible by Vicki and Fred Modell, who established the Jeffrey Modell Foundation in memory of their son, Jeffrey, who died at the age of 15 from complications of Primary Immunodeficiency (PI)—a group of more than 350 genetic disorders of the immune system which affects at least 1 in 500 people. PI, a chronic condition most frequently occurs in children and if not diagnosed and treated early, is often fatal.

“We at St. Louis Children’s Hospital are very grateful to be recognized as a Jeffrey Modell Diagnostic and Research Center,” said Gary Silverman, MD, PhD, pediatrician-in-chief and chair of the Department of Pediatrics at Washington University School of Medicine in St. Louis. “We are constantly expanding on the delivery of exceptional diagnosis and treatment for children with primary immunodeficiencies, and are very pleased to be placed alongside the world-class institutions in the Jeffrey Modell Centers Network.”

Through this new partnership with the Jeffrey Modell Foundation, St. Louis Children’s Hospital will expand its work to ensure that children with PI are identified and receive the best possible care. This includes publicizing the availability of newborn screening for Severe Combined Immunodeficiency (SCID) in our region and collaborating with colleagues at the National Institutes of Health (NIH) and top-tier academic institutions so that cutting-edge diagnostics are available to more children.

Megan Cooper, MD, PhD, newly-designated director of the Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies at St. Louis Children’s Hospital, and expert immunologist, will use resources provided by the Center to improve the availability of diagnostic testing and novel targeted therapies for children with PI in an effort to improve the quality of life for these young patients. As a Jeffrey Modell Center, Dr. Cooper and her team also seek to increase awareness about PI by working to educate residents, fellows, and medical peers.

“Jeffrey never knew how he would change our lives forever, and the lives of so 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.”

Since Vicki and Fred Modell began their journey in 1987, medical advances in screening, diagnosis, treatment, bone marrow transplantation and gene therapy, have developed at an extraordinary pace. Today, the Jeffrey Modell Centers Network includes 781 Expert Physicians, at 356 Research, Diagnostic, & Referral Centers, serving 273 cities, 86 countries, and spanning 6 continents.

Remarkably, more than 45 new genes have been discovered at Jeffrey Modell Centers in the last year, and the Jeffrey Modell Foundation has organized more than 40 scientific symposia worldwide. Thanks to the tireless commitment of Vicki and Fred Modell, children in nearly every state—and from across the world—are being screened at birth for PI and offered hope for a cure.

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St. Louis Children’s Hospital has provided care for children for more than 130 years. US News & World Report ranks St. Louis Children’s among the best pediatric hospitals in the nation. The hospital is affiliated with Washington University School of Medicine, one of the leading medical research, teaching and patient care institutions in the nation. St. Louis Children’s is a member of the BJC Healthcare network but relies on philanthropic support to deliver the specialized care children need, to extend health care services to the community, and to pursue research that promises to transform pediatric medicine.