UCSF celebrated the opening of one of only a small number of Jeffrey Modell Foundation Diagnostic Centers for Primary Immunodeficiencies in the world, in ceremonies held recently at the Paul and Lydia Kalmanovitz Library.
The center will be led by Jennifer Puck, MD, one of the world's leading authorities on the debilitating and sometimes deadly inherited conditions that can rob sufferers of the ability to fight off infection. A pioneer in the field of primary immunodeficiency research and care, Puck is a professor of pediatrics and human genetics and director of the Pediatric Clinical Research Center at UCSF Children's Hospital.
In attendance at the ceremonies on May 14 were the center's benefactors, Vicki and Fred Modell, co-founders of the Jeffrey Modell Foundation, which is named for their son, who in 1986 died of a primary immune disorder at 15 years old.
Today, there are Jeffrey Modell Centers in the United States, Europe and Asia.
"There is a large, undiagnosed population of children and young adults suffering with these diseases, keeping them from enjoying a full life, as they often miss 30 or 40 days of school every year," said Vicki Modell.
"Their illness interrupts their activities, detours their plans and shatters their dreams," she said. Prompt diagnosis and treatment can help some people who suffer from immune disorders to lead normal lives.
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At the reception are, from left, Diane Wara, MD, division chief of the pediatric immunology and rheumatology; Jennifer Puck, MD, program director of the Pediatric Clinical Research Center; Fred Modell, co-founder of the Jeffrey Modell Foundation; and Vicki Modell, co-founder, Modell Foundation. |
Primary immunodeficiency is the term for a broad spectrum of more than 120 inherited illnesses that encompass everything from babies born with no infection-fighting cells called lymphocytes to children and adults with rare and not-so-rare difficulties with excessive infections or unbalanced immune reactions that can attack a person's own tissues.
Primary immunodeficiency diseases can affect males and females of all ages. The most severe forms are present during infancy or childhood, but are often misdiagnosed as common sinus or ear infections, bronchitis, pneumonia, and diarrhea. In fact, these children's ability to fight off infection is greatly reduced or absent. Failure to diagnose and treat PI can result in serious chronic illness, permanent organ damage and death.
"The Jeffrey Modell Diagnostic Center will provide a framework within which we can reach out to the community as a center of excellence," Puck said. "We will be able to diagnose and treat more patients with PI and, in partnership with our local medical colleagues and by networking with researchers around the world, we can advance cutting-edge research to learn more about these rare diseases."
UCSF has a long history of excellence in the treatment of primary and acquired immune diseases, under the leadership of Diane Wara, MD, division chief of pediatric immunology and rheumatology, and Morton Cowan, MD, director of the pediatric bone marrow transplant program at UCSF. Many children suffering with more severe forms of primary immune disorders are treated with bone marrow transplantation to provide them with new immune systems.
The Jeffrey Modell Foundation was established in 1987, and is dedicated to the early and precise diagnosis, meaningful treatment and ultimate cure of primary immunodeficiencies. More information can be found at www.info4pi.org or by calling the JMF hotline at 1-866-INFO-4-PI.
One of the nation's top children's hospitals, UCSF Children's Hospital creates an environment where children and their families find compassionate care at the healing edge of scientific discovery, with more than 150 experts in 50 medical specialties serving patients throughout Northern California and beyond. The hospital admits about 5,000 children each year, including 1,600 babies born there.
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