Jeffrey Modell Foundation Plans Historic Middle East Meeting
NEW YORK, May 7, 2012 /PRNewswire/ — Physicians from 17 Middle East countries will convene next month for the first Middle East Workshop on Primary Immunodeficiencies (PI). The three day meeting is being organized by the Jeffrey Modell Foundation (JMF), a global organization dedicated to PI research, physician education, patient support, public awareness, advocacy and newborn screening. There are 493 referral physicians at 194 diagnostic and research centers in the Jeffrey Modell Centers Network.
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Despite the fact that PI affects 10 million people worldwide, most of those affected are not aware of their disorder, and suffer with chronic, recurring, and sometimes life threatening infections. Participants at the workshop are leading experts from: Algeria, Azerbaijan, Egypt, Greece, Iran, Israel, Jordan, Kuwait, Lebanon, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Tunisia, Turkey, United Arab Emirates, as well as the U.S. and Canada.
Vicki and Fred Modell established the Jeffrey Modell Foundation 26 years ago in memory of their son Jeffrey, who lost his battle with Primary Immunodeficiency at the age of 15. There are more than 200 genetic defects under the umbrella of PI. The most serious is Severe Combined Immune Deficiency (SCID), often referred to as “Bubble Boy Disease.” There is a remarkably high incidence of SCID among newborns in the Gulf Region.
Babies born with SCID fail to develop a functional immune system. They appear normal and healthy at birth, causing delayed diagnosis until they are repeatedly hospitalized for life threatening infections. Undetected and untreated, a baby with SCID will die before his or her first birthday. The incidence of SCID is reported to be 5 times greater in the Gulf Region than in most other parts of the world.
The Jeffrey Modell Foundation recently initiated programs of screening newborns in the U.S. for SCID. The condition can be precisely identified in the first weeks of life and the baby can most often be cured with a bone marrow transplant. JMF funded the program and now 70% of all newborns in the U.S. are born in States that are screening, piloting, or planning a program of Newborn Screening for SCID.
The Middle East Workshop will take place in late June and will focus on Newborn Screening, newly discovered defects, diagnosis protocols, and treatments, including bone marrow transplantation and gene therapy. There will also be sessions on network models, educational programs, and opportunities for local/regional collaboration.
Vicki Modell said, “We are on an historic journey and we are now taking first steps to the eradication of devastating fatal diseases such as SCID. Fred and I are honored that the most respected leaders in the region have taken this bold step to meet together. The possibility of creating meaningful interaction, collaboration, and cooperation in this part of the world fills us with hope and optimism. We believe that working together, these physician-experts will proudly celebrate remarkable scientific accomplishments, and they will save the lives of newborn babies, while providing an improved quality of life for patients with Primary Immunodeficiencies all over the world.”
About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency – a genetic condition that is chronic, serious, and often fatal. JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and Newborn Screening.
Vicki Modell, Jeffrey Modell Foundation, (212) 819-0200
Fred Modell, Jeffrey Modell Foundation, (212) 819-0200
SOURCE Jeffrey Modell Foundation