The opening of the Jeffrey Modell Center for Primary Immunodeficiencies (PI) will be announced at a press conference Friday April 23 at 10:30 a.m. at The Anlyan Center, Yale School of Medicine, 300 Cedar St.
PI is an umbrella term for over 100 genetic defects ranging in severity from chronic sinusitis to Severe Combined Immune Deficiency (SCIDS), commonly known as "Bubble Boy Disease."
The goal of the new center is to raise awareness of PI diseases and ensure that the New Haven community has access to the highest levels of treatment, including those children most at risk of going undiagnosed for PI. The center is made possible by a grant from Bayer HealthCare LLC, Biological Products Division (Bayer BP).
Because symptoms of PI often present themselves as common, chronic childhood illnesses such as ear and sinus infections, pneumonia and bronchitis, even the most vigilant physicians may misdiagnose the presence of a PI disorder. The condition can result in serious, recurrent and often life-threatening infections.
"We are very grateful for the generous gift that will allow us to continue researching the genetic causes of primary deficiency diseases and promoting the early diagnosis and treatment," said PI researcher Ramsay Fuleihan, M.D., associate research scientist in pediatrics at Yale School of Medicine.
The opening of the center coincides with PI Awareness Week, April 18-25, proclaimed by the United States Congress, in conjunction with the Jeffrey Modell Foundation, to address the severe under diagnosis of PI. It is a frequently overlooked disease that affects over one million children and young adults in the United States and 10 million worldwide. The week features an array of activities designed to educate and inform physicians, nurses, patients and the general public, to ensure that anyone with PI receives a proper diagnosis and treatment.
"Studies consistently show that children who are diagnosed early and receive proper treatment have an excellent prognosis for managing or even curing the disease," said Fred Modell, co-founder of the Jeffrey Modell Foundation. "Our aim is to give every child a chance to lead a healthy, normal life."
"Bayer BP has a long-standing commitment to funding research and treatment programs that focus on improving patient care and quality of life," said Terry Tenbrunsel, vice president, sales and marketing at Bayer BP. "The goal of this initiative is to increase awareness of PI and at the same time provide patients and their families extensive assistance with diagnosis and treatment."
Speakers at the Center announcement will include Interim Dean of Yale School of Medicine Dennis D. Spencer, M.D., Margaret Hostetter, M.D., professor and chair of pediatrics at Yale School of Medicine and Chief of Pediatrics at Yale-New Haven Children's Hospital, and Debbe Longo, who lost her child to PI.
The Jeffrey Modell Foundation was established in 1987 by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of a PI disease. The mission of the Foundation includes research, physician education, patient support and public awareness of Primary Immunodeficiency. More information on PI can be found at www.info4pi.org or by calling 866-INFO-4-PI.
Contact
Karen N. Peart
203-432-1326