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May is Neurofibromatosis Awareness Month

ABOUT NEUROFIBROMATOSIS (NF):*

Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)

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Reggie’s First Ever PSA for Neurofibromatosis, 1989!

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Panel discussion on neurofibromatosis with Reggie Bibbs, Andy Pagoda and Dr. John Slopis at Texas NF Symposium, 8/7/10

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NF Symposium, M.D. Anderson Cancer Center, 8/7/10

Today was a great day at M.D. Anderson Cancer Center. The Texas NF Foundation put on a symposium for NF patients detailing the latest treatment options, research, genetic testing, clinical trials, learning disabilities, and educational partnerships regarding neurofibromatosis. We had incredible presenters: Dr. John Slopis, Dr. Bartlett Moore, Dr. Ian McCutcheon, Dr. Shweta Dhar, Dr. Laura Klesse and Brenda Nelson.

Drs. John Slopis and Bart Moore, Reggie Bibbs and Dr. Ian McCutcheon of M.D. Anderson Cancer Center

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ONCE AGAIN, THANK YOU TO THE TEXAS NF FOUNDATION,FOR CAMP FOR ALL

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It is that time of year again. The Texas NF Foundation, is making it possible for nearly 200 persons to have a great weekend at Camp For All. This weekend will be our yearly camp for persons with nf, along with family and friends. The one time most of us get to see each other. I’m looking forward to horse back riding, Zip line, which I hear is lots of fun. Fishing, petting zoo, and Lots of talking with new and old friends. Also looking forward to sharing with you photos to all who can’t make it to camp this year. Let’s talk about camp this week. What do you look forward to this weekend at Camp For All.