neurofibromatosis cafe

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

National Doodle Day Benefiting Neurofibromatosis

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I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).doodle.jpg

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit http://www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

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March 6, 2008 Posted by | Appearances, Awareness, Benefit, Celebrity, CTF.ORG, Facebook, Friends, Friends of NF, Houston Texans, national doodle day, NF1, NF2 | , , , | 62 Comments

May is National Neurofibromatosis Awareness Month

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March 1, 2008 Posted by | Awareness, CTF.ORG, Friends with NF, http://www.ctf.org, Laurie Selzer-MNI, neurofibromatosis | 1 Comment

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

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

Laundry Day Book Proceeds benefit CTF – The Children’s Tumor Foundation!

Jacquie Rogers

People have been washing clothes (or furs) for a long time. Most sites say that humans finally got a clue that good hygiene made for better health. I’m of the opinion that people liked to be comfortable then as now. Their skin chafed and got rashes just like ours does, so it stands to reason that they’d want to rid themselves of particulate matter just as we do. Take a look P&G’s overview of laundry methods from prehistoric times until the present for good information on products used, and when.But, lazy person that I am, I’m more interested in gadgets, so let’s start a little later in the game…say, the 1800s. Continue reading

May 27, 2007 Posted by | CTF.ORG, Fundraising, neurofibromatosis | , , , , , | Leave a comment

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

May 11, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation | 6 Comments

May is National NF Awareness Month!!!

Neurofibromatosis: New Research, Clinics Offer Hope

 
 

logo-default.jpgNewswise — After ten years and $217 million worth of “bench to bedside” research, there are signs of hope in the medical community and among the 1 in 3,000 individuals worldwide who have neurofibromatosis (NF), a serious neurological disorder that causes tumors to grow on nerve sheaths throughout the body, according to the Children’s Tumor Foundation (CTF). And, that is something to celebrate during May, 2007 which is National NF Awareness month. Continue reading

May 9, 2007 Posted by | CTF.ORG, http://www.ctf.org, neurofibromatosis, News, NF1, Texas NF Foundation, Uncategorized | 15 Comments

MORE ON THE NF SYMPOSIUM

Elizabeth Bertrand during Dr. Slopis Q&AThe NF Symposium was terrific! I want to talk about how I felt meeting so many new people I can now call my friends. At the symposium, one of my new friends purchased five of my shirts in support of my JUST ASK campaign. I received tons of wonderful messages on the Children’s Tumor Foundation bulletin board. I’m happy to be a part of the board and meeting new friends. You can see from the photo the three of us are happy campers.

May 9, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Friends, http://www.ctf.org, neurofibromatosis, News, NF1, T-shirt | 1 Comment

WELCOME TO MY BLOG AND MY NEW FRIENDS AT WWW.CTF.ORG AND THE NF EUROPEAN MEETING!

Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure. Continue reading

April 28, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Links, neurofibromatosis, News, Texas NF Foundation | , , , , | 14 Comments