neurofibromatosis cafe

A place to talk about NF, have fun and share.

Carolyn Farb Endowed Lecture in Neurofibromatosis

the-fivesome

Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

The Carolyn Farb Endowed Lecture in Neurofibromatosis,

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

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December 15, 2008 Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research | 17 Comments

Texas NF Foundation to stage city-wide fundraiser at Houston’s finest restaurants

Texas NF Foundation to stage city-wide fundraiser at Houston’s best restaurants2008 Houston HighlightsLast night, Lou and I attended a special committee meeting to help plan and execute a fund-raiser to help those with NF in the Houston area. The fund-raiser will be held on Tuesday, April 22, 2008, at the Hotel Derek, in the Galleria area of Houston.

I am proud to be Honorary Chairman of this important event and I hope all of my friends can join me in this very worthy cause! Below is a letter from our Houston Highlights Chairman, Ishma Blackwell, detailing the event. It’s going to be a lot of fun!

DOWNLOAD INVITE  2438_001.pdf

Continue reading

February 2, 2008 Posted by | 2008 Houston Highlights, Awareness, Benefit, Friends of NF, M.D. Anderson, neurofibromatosis, News, nf, Organizations, Restaurant, Texas NF Foundation | , , , , , , , , | 154 Comments

Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch

bartaski.jpgGuess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.

January 22, 2008 Posted by | Awareness, CTF.ORG, Friend, Friends of NF, Fundraising, Just Ask!, M.D. Anderson, Medical Resources, neurofibromatosis, Texas NF Foundation | , , , , , | 281 Comments

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 Comments