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Promising Results in Tumor Shrinkage Study Announced at Neurofibromatosis Conference

Over half of patients treated with selumetinib in phase I trial see reduction in plexiform neurofibromas.

New York, NY (PRWEB) June 08, 2015

As hundreds of the world’s leading NF experts convene in Monterey, California for the Children’s Tumor Foundation NF Conference, the largest gathering dedicated to neurofibromatosis (NF), it was announced today that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1”, Brigitte C. Widemann, MD, of the National Cancer Institute (NCI), reported that response data in a phase I trial for children an Continue reading Promising Results in Tumor Shrinkage Study Announced at Neurofibromatosis Conference

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May is Neurofibromatosis Awareness Month

ABOUT NEUROFIBROMATOSIS (NF):*

Neurofibromatosis, or NF, is a common, yet under- recognized genetic disorder that can cause tumors to grow on nerves throughout the body.

• NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

• NF occurs in one in every 3,000 people and affects millions worldwide.

• NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain.

• NF can arise in any family regardless of race or ethnic origin. Roughly half of all cases arise in families with no history of the disorder.

• NF has three distinct forms, NF1, NF2, and schwannomatosis.

• NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.

• Progress toward ending NF is being made every day. Because of Children’s Tumor Foundation funding, there are over 40 on-going NF-specific clinical trials in existence, and 44 NF Clinics nationwide.

* Above information was provided by the Children’s Tumor Foundation (CTF.org)

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Dr. Bart Moore, “Just Ask!” and the Children’s Tumor Foundation

Hey Reggie!
I was at the Children’s Tumor Foundation (formerly National NF Foundation) meeting with Dr. Slopis in Florida. I gave a talk on brain imaging in children with NF.

Dr. Riccardi was there also and he ended his talk with these photos of you and him wearing the Just Ask T-shirt. Well, he might have upstaged me, but when I got up to speak I was actually wearing the shirt !! Dr. Slopis took a photo of me wearing it. I even turned around and pointed to the “Just Ask” like you do and everybody clapped. It was really cool and I wish you could have been there. I also ended my talk with the attached slide (Moore CTF fMRI presentation).
There were a lot of important NF researchers and doctors there.

The meeting is still going on but I had to come home and wanted to get you these photos for your website, if you want.
Vic”s slide and my slide both had your website on it so you may be getting some visitors.
Best,
Bart

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URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!

Just received this from my friend, Dr. Moore, at MD Anderson. I’m writing my letter now! I hope you can too! Here are 2 links that will make it real easy for everyone to send a letter!

Or, scroll down to the bottom of this blog and you’ll find ready-made letters to key subcommittee members . All you have to do is replace Lou’s Name and Address with your own then FAX it to the number on the letter. It’s that easy! Continue reading URGENT!!! NF NEEDS YOUR HELP!!!! Deadline: Wed, April 9!