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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 National Neurofibromatosis Month

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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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We made it!!! Just Ask drops in on the CTF NF Forum

imageIt wasn’t easy. It wasn’t pretty. But, it worked!

The Just Ask Tour traveled over 1,300 miles – from Houston, TX to Scottsdale, AZ – to attend the annual CTF NF Forum! Over mountains, through deserts, eating more fast food than we’ve ever eaten in our life, Reggie and I made it and lived to talk about it.

It’s been non-stop meetings and presentations packed with news on the latest clinical trials for Neurofibromatosis patients, the latest research and the latest facts about this disorder that affects 1 in 3,000 people!

I’ll write more after the conference is over but this is what the CTF website had to say:

April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States.

The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis.

The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!

The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.

 

 

 

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Just Ask World Tour to Make Stop at CTF NF Forum in Scottsdale, AR!

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Reggie Bibbs and I are excited to kick-off the Just Ask World Tour at the CTF NF Forum in Scottsdale, April 17! Come join us we finally get to meet all the great CTF people in Arizona!

April 17-19, 2015: Scottsdale, AZ
The Children’s Tumor Foundation’s NF Forum is a national patient and family gathering hosted annually in different cities across the United States. The NF Forum allows those living with NF, and their families, to connect, support, and learn from each other while attending seminars on relevant topics pertaining to neurofibromatosis. The 2015 NF Forum features: NF clinical and research updates, sessions on the personal and social challenges of living with NF, interactive Q & A sessions with NF specialists, fun activities, meals, social time with friends and family, and much more!

The Children’s Tumor Foundation, mindful of the high cost of transportation and family expenses, has underwritten a significant portion of the registration in order to keep the registration costs as low as possible.

FEES
Adult (Age 21+) $99 (USD)
Youth (Ages 17-20) $75 (USD)
Child (Ages 0-16) $50 for first child ($20 for each sibling)
Sat. Dinner Guest for non-registered attendees $100 (USD)
On-Site Registration: April 17-18, 2015 $150 (USD)
If you have any questions, concerns or need further assistance please email Traceann Rose at [email protected]

http://www.ctf.org/NF-Forum/NF-Forum-2013

 

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Just Ask Us about Houston’s 1st Ever Cupid’s Undies Run!

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The Winner!
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The Undies!
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The Start!

The Just Ask World Tour descended on Downtown Houston today to witness the first ever Cupid’s Undies Run in the Bayou City!

VIDEO OF THE START

Reggie and I had no idea what to expect but what we witnessed just blew us away!

Try to imagine 350 half-naked runners taking to the streets of Houston in celebration of their fundraising for the Children’s Tumor Foundation.

350 of the nicest, most kind-hearted people in the world who not only ran in their undies to raise awareness of and money for neurofibromatosis, the same disorder that Reggie has. Money raised during the Run will help fund clinical trials, discover better treatments and hopefully find a cure!

CHANNEL 13 PHOTOS

Reggie and I had the pleasure of hanging our with the organizers of Houston’s first race and, I got to tell you, we had a blast!

VIDEO OF THE AWARDS

I’ll write more later but, right now, I’m more interested in uploading the photos and videos to Reggie’s Flickr account. Watch for the links here!

PHOTOS

HOUSTON CHRONICLE PHOTOS

http://m.chron.com/entertainment/slideshow/Cupid-s-Undies-Run-Houston-2015-103274/photo-7526613.php