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NF Fact of the Day for May 2nd

Reggie's first baseball game

 

 

 

 

 

 

Neurofibromatosis is a group of three genetically distinct disorders that cause tumors to grow in the nervous system.  Tumors begin in the supporting cells that make up the nerve and the myelin sheath (the thin membrane that envelops and protects the nerves), rather than the cells that actually transmit information.  The type of tumor that develops depends on the type of supporting cells involved.

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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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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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Happy NF Awareness Month!!

With this being Neurofibromatosis Awareness Month, I want to share the new look of my Just Ask website. Going into the 6th year of Just Ask!. With over 900 followers, and 5,000 friends, I believe a tremendous difference has been made in my life, as well as the lives of others.

Reggie Bibbs, Founder

My goal is to create awareness and support those who are affected. I can not find a cure, that is the job of all the terrific researchers, that are working hard at finding a cure. While the researchers are working, I will continue to do all I can to support all that reach out to me for a listing ear. It is only going to get better, and I will reach more to those who are willing to listen. It is NF awareness month every month if you ask me.