James Brown Talks About Niemann-Pick Disease on Fox NFL Sunday This Week

On December 26, the Fox NFL Sunday team -- James Brown, Terry Bradshaw, Jimmy Johnson, and Howie Long - - will be wearing the National Niemann-Pick Disease Foundation (NNPDF) lapel pin during their broadcast, which begins at noon, and Brown, the Foundation’s national spokesperson, will discuss this devastating disease and his special relationship with a 19 year-old girl afflicted with Niemann-Pick, Hunter Ozmer of Roanoke, Virginia, and her father, Hunt.



Photo of the Ozmers and the Fox NFL Sunday team ] Parents of children with this disease across the country are inviting friends and relatives to their homes to watch the broadcast this Sunday and learn about this disease.

Brown met Hunter and Hunt Ozmer several years ago when they were having a pasta dinner in a restaurant after a visit to the National Institutes of Health in Bethesda, Maryland, where Brown lives. (When the Ozmers go out to eat, they order pasta, because it’s easier for Hunter to swallow.) Brown was quickly impressed by Hunter’s courageous fight against this illness and has been helping the Foundation expand awareness of it ever since.

Niemann-Pick is a heartbreaking disease whose symptoms – such as an enlarged abdomen, liver or spleen; respiratory, sight and motor difficulties – usually start in infants and always results in their very early death, almost always before the age of 20, in many cases by 3. It affects metabolism, triggers progressive deterioration of the nervous system, is caused by specific genetic mutations (both parents must be carriers), strikes the youngest of children and is often misdiagnosed. One of 200 people carry a defective gene for Niemann-Pick Type C.

Concerned with cutbacks in funds for medical research and knowing that without research there was little hope for their children, parents of children suffering from Niemann-Pick formed the National Niemann-Pick Disease Foundation, www.nnpdf.org, in 1992. They are desperately seeking funds for research to find a cure for the disease or a way to slow its progress, and are eager to enlighten the public, including doctors.

Niemann-Pick researchers have found a "very striking parallel between Alzheimer’s and Niemann-Pick," according to an expert in Genetic Neurological Disease at Albert Einstein College of Medicine. "If we could understand what is causing NP disease, it will help us better understand Alzheimer’s."

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NOTE TO EDITORS:
To interview James Brown and Hunt Ozmer, please contact Martin Irom (above).

Sunday’s New York Times ran a front-page article about Niemann-Pick Disease, “After Baby's Grim Diagnosis, Parents Try Drastic Treatment”.