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Teen with little-known disease inspires nonprofit effort

Teen with little-known disease inspires nonprofit effort

Jeffrey Modell was like millions of other boys. He loved to play tennis, shoot hoops, go to concerts and hang out with his girlfriend.

But the bad times struck without warning — sudden high fevers, bronchitis, sinusitis and other infections — often leading to extended periods on medication and long hospital stays.

Jeffrey had primary immunodeficiency (PI), but at the time, medical science hadn’t caught up with his disease enough to save his life. Although his parents took him to the best doctors, little was known about his condition and even less about treatment. In 1986, Jeffrey lost his battle with PI.

“Jeffrey would say to us, ‘Do something! You went to college; you’re smart.’ And to his doctors, ‘Do something. You’re smart; you went to medical school,’” said Vicki Modell, Jeffrey’s mother. “It was heartbreaking to hear. Little did he know his doctors and parents were doing everything they could.”

PI refers to a group of genetic immune system disorders characterized by serious infections that can be recurring, persistent, debilitating, chronic and sometimes fatal.

The Modell family learned a lot during Jeffrey’s short life — especially that answers and assistance are scarce for those affected by PI. Inspired by his courage and optimism, they created the Jeffrey Modell Foundation, a global nonprofit to help patients, families, the public, physicians and researchers understand the nature of PI.

With a matching grant of $500,000, the foundation recently established a Jeffrey Modell Diagnostic and Research Center at Texas Children’s. The center is part of the Jeffrey Modell Centers Network, which includes 125 centers and more than 556 expert immunologists across 234 academic teaching hospitals and medical schools in 78 countries.

Directing the Jeffery Modell Diagnostic and Research Center at Texas Children’s is Dr. Jordan Orange, chief of Immunology, Allergy and Rheumatology and director of the hospital’s Center for Human Immunobiology.

“The Jeffrey Modell Foundation has helped make incredible strides in the invaluable early testing and advanced diagnosis of children with primary immunodeficiency,” Dr. Orange said. “I’m honored to be part of the research and testing that will be conducted at Texas Children’s Hospital through the Jeffrey Modell Diagnostic and Research Center in order to benefit patients affected by PI.”

“Although Jeffrey was taken from us much too soon, he made a profound impact upon us and upon this world,” Vicki said. “Sadly, he never knew how he would advance the science of PI, or how he would change the lives of thousands of children.”

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Dr. Jordan Orange

The research that will continue to advance the treatment of primary immunodeficiency (PI) is led by Jordan Orange, M.D., Ph.D., chief of Immunology, Allergy and Rheumatology. Here are the top five reasons why he’s perfect for the job:

5. Both? Yes, both. Dr. Orange earned an M.D.  and Ph.D. from Brown University School  of Medicine.

4. Specially trained. Dr. Orange completed  his pediatric residency training at the  Children’s Hospital of Philadelphia,  followed by postdoctoral fellowship  training at Children’s Hospital Boston and  Harvard University.

3. A big thinker. “I’ve spent my time thinking  about why we get sick,” he says.  “Specifically, why our amazing immune  system works so well most of the time. It’s  so fascinating to me that most people  really are healthy most of the time.”

2. Award winning. He’s won way too many  awards to name them all. One of them is  the 2009 American Philosophical Society  Judson Daland Prize, which celebrates  outstanding achievements in patient- oriented research.

1. Desire to be part of a winning team.  “An extraordinary commitment is being  made toward innovation at Texas  Children’s,” Dr. Orange said. “The next  generation of innovative solutions are  being pursued on a scale that is really  unprecedented. It became something  that I needed to be a part of.”