Due to all the issues with NF we desperately need donations for research towards a cure. - Tips on Organizing Fundraisers
Charities to Donate to
CTF, the Children's Tumor Foundation, helps to organize events for funraising for NF and donates a large amount of money regularly to NF trials. For a complete listing of Charaties to potentially donate or raise funds for, visit: HERE
- The Neurofibromatosis are genetically-determined disorders which affects more than 100,000 Americans. There is no cure. Through research and awareness we hope that a cure is found.
- Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).
- Neurofibromatosis has been classified into three distinct types; NF1, NF2 and Schwannomatosis. They are caused by different genes, located on different chromosomes.
- If you have NF, you're born with it. You don't get it later.
- NF is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined.
- Approximately 115 babies around the world are born with NF1 each day.
- NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born.
- NF2 is less common than NF1, occurring in 1:33,000 people worldwide.
- While today there is no consensus, studies indicate that schwannomatosis occurs in 1:40,000 people, similar to NF2.
- Many NF2 patients also have ocular abnormalities, causing blurred or loss of vision.
- Cataracts at a young age are common, and often an early symptom. They are somewhat more difficult to remove than conventional cataracts.
- 50% of all NF2 cases also have spinal lesions, causing pain. Most of these lesions never result in serious problems, but in some cases they can have very debilitating affects.
- Manifestations and symptoms can differ greatly for different NF2 patients, NF2 often follow similar paths in affected family members.
- If even one cell is left behind then it has the potential to regrow.
- If you have NF, you're born with it. You don't get it later. NF2 is a genetic condition. This means that you cannot catch it from other people.
- NF2 is hereditary in 50% of the cases. The other 50% are spontaneous mutations.
- Since AN tumors grow differently for NF2 patients, it is vital that the surgeon has NF2 experience as opposed to regular ANs. Hearing has been known to be preserved when the tumor(s) is very small.
- Preserving facial nerve function is very common in small to medium tumors.
- NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene.
- All forms of NF are autosomal dominant genetic disorders. This means that the disorder can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation" in the sperm or egg cell.
- The type of NF inherited by a 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 an equal opportunity disorder. It affects both sexes equally and has no particular racial, geographic or ethnic distribution. NF can appear in any family.
- While most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors, loss of limbs, malignancies, socioeconomic burdens, and learning disabilities.
- Learning disabilities are five times more common in the NF1 population than in the general population.
- In NF2, the hallmark of the condition is the development of tumors that grow on the eighth cranial nerve (acoustic nerve) in both ears, commonly causing deafness and severe balance problems.
- NF2 brings an increased risk of other types of nervous system tumors as well.
- Due to potential brain surgery complications, most of us with NF2, get to make Health Care Proxy and Medical Living Will decisions for ourselves shortly after being considered adults.
- 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.
- Another issue for NF2: Memorial List
NF2 NYC Support Group, New York
Email: Lori Davila at email@example.com
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