About

Improve the health and well being of individuals and families affected by the neurofibromatoses (NF) through research.

Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

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Neurofibromatosis (NF) has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, NF1 is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

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Dedicated to the memory of Michael Cole Green.

1. Encourage and support research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders.

2. Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information.

3. Assist in the development of clinical centers, best practices and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals.

4. Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population's understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public