Trek for Life - Kilimanjaro February 2005
What is Neurofibromatosis?

• NF is not a rare disorder, it is the most common neurological disorder caused by a single gene.
• NF has been classified into two distinct types, NF1 and NF2. They are caused by different genes, located on different chromosomes.
• NF1 is the more common form of NF, affecting approximately 1:4,000 births throughout the world.
• NF2 affects about 1:40,000 people worldwide.
• Both NF1 and NF2 are genetically-determined disorders which affect more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.
• Both forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" (change) in the sperm or egg cell.
• Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF (i.e., NF1 or NF2) inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.
• NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
• Although most cases of NF1 are mild to moderate, NF can lead to disfigurement; blindness; deafness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; learning disabilities and death.
• NF also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF population than in the general population.
• Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).
• NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that John Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.
• NF research began eighteen years ago by the National Neurofibromatosis Foundation and has been enormously productive ever since.

Why is it important to support the Texas Neurofibromatosis Foundation ?

The Texas Neurofibromatosis Foundation is a 501 (C) (3) a non-profit organization with the following mission statement:

"We are committed to meeting the needs of people challenged with neurofibromatosis by providing care, comfort, support, information, education, funding and other resources for its treatment, prevention and cure."

The Texas Neurofibromatosis Foundation was formed in 1980 to battle Neurofibromatosis and to serve the increasing number of men, women and children in Texas suffering with this disorder.

The Foundation was started by an NF mom, Doris Kraft of Austin, and an NF doctor in Houston, Dr. Vincent Riccardi. The Foundation was headquartered in Austin until 1987, when the main office was moved to Dallas. In 1993 an office was opened in Houston to further the services of TNFF around the state. Since its inception the Texas NF Foundation has grown rapidly and as the number of Texans afflicted with NF grows so does its responsibility to serve them.

The Foundation is dependent on funds raised by special events, foundations and individual donations.

At a personal level it is important to me because I recently lost my brother-in- law, James Baxter, to Neurofibromatosis. James was 39.

Although rarely in the public spotlight NF is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.

But this is much bigger than 'just' neurofibromatosis. Medical research has established that the gene that causes neurofibromatosis is also responsible for as much as fifty percent of all brain tumors. The money we raise for the Texas Neurofibromatosis Foundation will be used for medical research the benefits of which will improve lives not just of for patients with NF but for many thousands of others around the world.

In Houston a tremendous amount of research is already underway, particularly at the M. D. Anderson Cancer Center.

M. D. Anderson's renowned multidisciplinary approach brings together doctors, nurses, psychologists, researchers and social workers to help neurofibromatosis (NF) patients. Our clinic has been serving children and adolescents with NF for the past nine years, and we have now added a separate clinic to serve adults of any age with NF.

We're more than just a treatment center. The Neurofibromatosis Clinic's mission includes diagnosis, patient education, public awareness, as well as ongoing research to determine the most effective management strategies for NF complications.

M. D. Anderson Medical Services for NF Patients:

• Neurology
• Diagnosis & medical management
• Surgery (General, neuro, pediatric & plastic surgery)
• Oncology and neuro-oncology
• Endocrine studies & treatment
• Genetic counseling
• Dental services
• Hearing & vision evaluation
• Orthopedics
• Occupational, physical & speech therapy
• Radiological diagnostic procedures

Additional services available through the NF Clinic include:

• Neuropsychological evaluations
• Psychological support and counseling
• Academic counseling and support
• Referral to appropriate specialists
• Parent education
• Developmental assessment

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