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| The National Neurofibromatosis Foundation (NNFF) was founded in 1978 to help improve the health and well-being of individuals and families affected by neurofibromatosis. NNFF sponsors scientific research aimed at finding the cause and cure for both types of neurofibromatosis and promotes public awareness of the disorder. What is neurofibromatosis? Neurofibromatosis (NF) is a genetic disorder, the most common neurological disorder caused by a single gene. It affects more than one hundred thousand Americans, making it more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, and Tay-Sachs Disease combined. NF has been classified into two distinct types, NF1 (von Recklinghausen NF) and NF2 (Central Bilateral Acoustic NF). NF1 is the more common type and is characterized by multiple light brown spots (also referred to as "cafe-au-lait spots") and neurofibromas on or under the skin. It can also cause enlargement and deformation of bones and curvature of the spine (scoliosis). It can also affect nerves throughout the body, and occasionally tumors can develop on the brain, cranial nerves, or spinal cord. NF2 is the rarer type and is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions on the brain and spinal cord. Individuals with NF2 are at a high risk for developing brain tumors, and almost all people affected develop tumors on both nerves to the ears. Both forms of NF can occur in one of two ways: either passed genetically from a parent with NF to his or her child, or resulting from a spontaneous genetic mutation prior to conception. NF is worldwide in distribution and has no particular racial, geographic, gender, or ethnic distribution. NF could appear in my family. It could appear in yours. The NF gene has been implicated in the development of several of the most common and most serious cancers in humans. Therefore NF research may also benefit the 65 million Americans with cancer. The genetic markers for both NF1 and NF2 were found in 1987. The gene that causes NF1 and the products that gene encodes were discovered in 1990. The gene that causes NF2 and the product that gene encodes were discovered in 1993. Now it's time to develop the cure for this disorder. The NF Marathon Team was created to help raise funds and public awareness for their Research and Family Services programs. The premise is simple: walkers and runners raise funds for these programs and train for the completion of their marathon event, and NNFF pays for transportation, accomodation, and registration fees to get their athletes there. We are members of the Team, working hard to make a difference in thousands of lives.
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