Neurofibromatosis Cafe A place to talk, have fun and share.

The Group made it to Washington, DC last week which was a task in itself with  the winter storm hitting the east cost.  The storm was gone, but there was still a lot of snow.  Living in Houston, all my life. I have never seen that amount of snow in one place. Most of it was cleared away. It was enjoyable though.

The Neurofibromatosis Coalition team made all of the meetings. I believe all of the meetings went well. The amount requested  is $25 million. The same amount requested last year.  We were shaved down to 13 million.  The Department of Defense (DOD) could have easily awarded more funding for studies, if the funding was awarded.   The good news is there are studies that are waiting in line that could help.  Write your local and State Representatives and let them know how important funding is…it will save lives for millions of Americans by finding a cure for all types of cancer.

PHOTOS

Hello, everyone! Well, it’s that time of year again. This Sunday I will be joining NF, Inc. in Washington, DC  to represent individuals affected by NF and advocate for continued and increased federal funding of NF Research. A delegation of NF  representatives from organizations across the country,  will be visiting our Representatives and Senators. They will receive a packet of information describing our requests, and we would like to include personal stories from those who live with NF. We encourage you to send your personal story about how NF impacts you or your family, and how important federally funded research is to you. All stories will be hand delivered in Washington. Please include your name and address on your letter, and fax your letter to (630) 627-1117 or email to kbischoff@nfinc.org

Neurofibromatosis can cause variety of effects. Skin disfigurement only one symptom of congenital disorder

Published Wednesday December 2nd, 2009

By Sheryl Ubelacker
THE CANADIAN PRESS

TORONTO – Bob Bingham settles back in his leather easy chair and agrees he’s a man who’s comfortable in his own skin.

Enlarge Photo

The Canadian Press

Reggie Bibbs, 45, of Houston has a severe form of neurofibromatosis. Through his ‘Just Ask’ campaign and his website (www.reggiebibbs.com), he uses his disfigured appearance to raise awareness of the congenital disorder.

That might come as a surprise to some, for the topography of Bingham’s skin is anything but smooth. He has hundreds of lumps and bumps ranging over his body, from a smattering on his face and neck, to tightly packed clusters on his chest and back.

Benign tumours that form in the sheath surrounding nerve tissue, they are but one possible manifestation of a little-known genetic condition called neurofibromatosis, or NF.

“If I was walking down the street, you wouldn’t notice it,” says Bingham, 72, of Toronto. “But some of our people, their faces are very badly marked, like you would see them coming from several blocks away.” (more…)