NF Smarty Pants

Archive for August, 2009

Christine Scheller ran the New York City Half-Marathon and wrote about her race through a place with so much personal meaning. Christine is a member of the NF Endurance Team.

Deerwood Golf Course
North Tonawanda, NY
Scramble Format

10 am start

Proceeds to benefit Leah Manth and NF, Inc. Northeast

The Bezbatchenko family is organizing a golf classic in honor of their son David. David passed away in February from a brain tumor caused by neurofibromatosis. During a golf outing with his father, the duo hit back-to-back hole in ones. This event hopes to help the cause with the funds benefiting the Children’s Tumor Foundation.

The Senate has approved Dr. Francis Collins to be the new Director for the National Institutes of Health.

I have a correction on the Phase 2 clinical trials offered by PTC Therapeutics. Originally, I linked their PTC299 with bevacizumab because the news releases came out near each other and the descriptions of the drugs and their effects sounded similar.

PTC299 is not bevacizumab. I have corrected the original entry.

Eamon O Murchu and 11other cyclists rode 435 miles over 4 days as they raised money for the Neurofibromatosis Association of Ireland.

At 7:00 on the Speed Channel tonight, you can watch John Tancredi and DILYSI (Drive It Like You Stole It!) Racing take the track in the Grand-Am Rolex Series Crown Royal 200. John will be driving the Children’s Tumor Foundation racecar. Click on the link to see a picture.

Read about Edith Garrett’s experience with bevacizumab and how the drug helped her get her hearing back.

PTC299 is an orally administered drug developed by PTC Therapeutics. They are looking for people with NF2 to participate in in the next phase of clinical trials.

Bevacizumab is a cancer treatment drug. It’s meant to shrink the blood vessels going to a tumor to stop it from growing.

It was not previously tried on benign tumors because blood flow does not appear to play as big of a role in these types of growth versus the malignant ones.

Researchers tested the drug on ten people with auditory schwannomas from NF2. The tumors in nine of the patients reduced in size. Some even experienced hearing recovery.

Read more:

• Forbes
• Science Daily