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Watch the history of the Texas NF Foundation Video!!!

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!

Continue reading Watch the history of the Texas NF Foundation Video!!!

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NF obituary from today’s Bethel Beacon in Connecticut.

05/18/2007
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.

Continue reading NF obituary from today’s Bethel Beacon in Connecticut.

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ART CAR PARADE

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!

CLICK THIS TO SEE MORE!

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We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

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.

SIGN PETITION Continue reading We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

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My favorite Mexican Restaurant – Tila’s Restaurante and Bar on South Shepherd in River Oaks!

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!