Reggie Bibbs, Houston, Texas, has neurofibromatosis. In this fun and informative 60-second television public service announcement, Reggie explains what it’s like living with neurofibromatosis but, more importantly, how he lives with it. He is funny, upbeat and very courageous. An inspiring video made by an inspiring man!

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charles-reggie-bob.jpgI set up an Flickr account for Texas NF photos and I would like people to go to Flickr and upload your favorite photos. Or if you don’t know how, you can send them to me. I will upload them for you. Here is the link.

Maybe you have pictures from camp you want to share. Or maybe a support group. I hope to see your photos soon.

SEPT 7 – 9, 2007, Burton, TX

Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families. Continue reading

newscastI just posted the FOX 26 interview about the “Just Ask!” campaign to Digg, an online video news site that is very popular in the blogger world. A video that does well here gets passed around the world very quickly and helps show up higher in the search engine world. If you could take a moment to go to and watch the video and click on “Digg It” it would help this site show up higher in Google when you search for neurofibromatosis. Thank you for any help you can give!

“Hi, My name is Camrin, at 15 years of age I was diagnosed with neurofibromatosis type 1. Neurofibromatosis is small tumors on your head or other areas of the body. Some of the symptoms might be brown spots throughout your entire body similar to birth marks. After the doctor diagnosed me with that I also had anxiety problems. I was than put on medicine called paxil. The teachers new that I was on it and they used to ask me if I took it or not. Sometimes, I would say yes and other times I would say no. I didnt like being on anxiety medicine because it made me feel so stupid.” white_lilies2445

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Texas NF Foundation 15th Anniversary VideoI have a terrific video for all of you!

About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.

I’ve just watched it for like the 100th time and I’m still learning more stuff!

Click here for the link to the Texas NF 15th Anniversary Video!

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Zowine’s accomplishments, not illness, recalled
By: B.J. O’Brien
(Reprinted from website of Bethel Beacon)

Henry Zowine, a lifelong Bethel resident, might have had a disability but he didn’t let that stop him from accomplishing a great deal in life.
Mr. Zowine, who suffered from neurofibromatosis, died Saturday at his home in the presence of his family. He was 45 years old (see obituary, Page 7).
Neurofibromatosis affects the brain, spinal cord, nerves and skin. Those affected by it get tumors on the nerves in their ears, which causes hearing loss and eventual deafness. They can also have problems with balance. The disease can also cause the loss of eyesight.
Neurofibromatosis is a genetic disease. Mr. Zowine’s son Zack, 16, also died from it a few months ago.

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Reggie Bibbs/MohawkLou and I went to the Art Car Parade yesterday and met some crazy, wonderful people including the legendary George Clinton, Mayor Bill White, The Roller Derby Girls and Wednesday, my favorite day of the week and belly dancer!

We took photos of the coolest cars and people we came across during the Art Car Parade. Environmental EncroachmentRules!

Lot’s of really fine cars but they couldn’t hold a candle to all of the people we met and took photos with! Hope you enjo and to all of you who we met this weekend, thank you for making it such a wonderful experience!


To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

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Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch.Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch and had one of the most incredible meals know to man or woman. The service was great and we were made to feel very special. Thank you all!

More photos!