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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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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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May is National Neurofibromatosis Awareness Month

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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.

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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 is National NF Awareness Month!!!