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Public Statements

Neurofibromatosis Awareness

Floor Speech

Location: Washington, DC


Mr. COBURN. Madam President, I rise today to highlight the difficulties caused by neurofibromatosis, NF, the work currently being done by the Federal Government to address this difficult disease, and the importance of awareness about NF.

NF is a genetic disorder of the nervous system, which causes tumors to form on the nerves anywhere in the body at any time. NF is a progressive disorder and is one of the most common genetic disorders in the United States. An estimated 100,000 Americans have a neurofibromatosis disorder. About half of those affected with NF have a prior family history of the disease.

NF has two distinct forms, NF1 and NF2. NF1 is the more common version, occurring in 1 of nearly every 4,000 individuals in the U.S. It has varying manifestations and degrees of severity resulting from a mutation of the NFI gene. Symptoms include common skin abnormalities and are often evident at birth or shortly afterwards. NF1 can cause learning disorders, bone deformities, and may even be associated with cancer. NF2 is a much more rare condition, resulting from a mutation of the NF2 gene, that is most frequently associated with hearing loss and visual impairment.

The National Institutes of Health, NIH, supports critical research to fight NF, investing approximately $13 million a year. At NIH, the $1.5 billion National Institute of Neurological Disorders and Stroke, NINDS, supports research and clinical trials to understand normal and abnormal development of the brain and nervous system to improve our understanding of the disease and our ability to prevent, treat, and ultimately cure the NF disorders. Researchers have been able to locate the exact NF1 gene, which they found normally works as a ``molecular brake'' to keep cells from overmultiplying, and the NF2 gene, which they found normally helps suppress tumors. It is the mutations of these genes that cause the difficulties associated with NF. According to NINDS:

Understanding the molecular pathways and mechanisms that govern these key proteins and their activities will offer scientists exciting opportunities to design drugs that could replace the missing proteins in people who have neurofibromatosis and return their cell production to normal.

NINDS is currently researching how NF1 can also cause abnormal fetal development that can cause learning disabilities and cognitive deficits for children. NINDS also supports research aimed at developing improved methods of diagnosing NF and identifying factors that cause the wide variations of symptoms and severity of the disorders.

As a practicing physician, I am encouraged that NINDS is performing research to help doctors equip parents for their child's education by pinpointing associations between brain abnormalities and specific cognitive disabilities. This will help parents to develop and implement early intervention programs.

Having treated patients with NF, I know firsthand the pain and suffering associated with the disease and the difficulties it can cause for parents. The ongoing Federal research activities though NIH are critical toward fighting NF. I also applaud the tremendous efforts of private foundations and the thousands of NF volunteers and advocates across the country. It is my sincere hope that public-private partnerships will continue to provide medical breakthroughs that can prevent, treat, and cure NF and other painful diseases.

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