NF Awareness Month
NF Awareness Month
#1NF Awareness Month
Posted: 5/1/07 at 3:52am
It's May so that means it is Neurofibromatosis awareness month!
Neurofibromatosis or NF for short is a genetic disorder that can cause tumors to grow anywhere in or on the body. It is one of the most common genetic disorders in the world. NF affects over 2 million people worldwide. It is more common than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined. There is currently no cure for NF, and government funding for research has been cut in half due to the expenses of the war in Iraq.
There are two main nonprofits in United States that work in patient support and the search for a cure. NF Inc. and the Children's Tumor Foundation. The Children's Tumor foundation is the nonprofit I work with. The Foundation raises money for research into a cure, works to spread awareness of NF, assists in developing patient support, and works to provide up to date accurate information about the disorder.
I am a member of the marathon team, and will be running my second marathon with them on Sunday. The team raises awareness about the disorder and raises money to fund research into the disorder to find a cure. The marathon team numbers in the hundreds, but it really does feel like a close knit group. I've gotten in touch with some pretty amazing people. One person I met ran her first marathon and then had brain surgery a few weeks later. She has lost all her hearing due to NF, and had some auditory implants put in during her last surgery. Another four year old girl just got off chemotherapy to stop the growth of a tumor on her optic nerve in December, and I am actually running the marathon in her honor. She is doing very well now. I was even able to visit the national headquarters while I was on Spring Break and met just about everyone working in the New York office.
If you'd like to learn more about the disorder, visit http://www.ctf.org
CTF Marathon Team Video: http://digitalstandard.com/marathon/marathon.html
PSA: https://www.ctf.org/psa/30sec.mpg
And if you have any questions feel free to ask. There are several board members besides myself who either have the disorder or are knowledgeable about it.
#2re: NF Awareness Month
Posted: 5/3/07 at 7:25pm
And you can tell I'm dedicated to the cause because i am even willing to wear short shorts for it! 
#3re: NF Awareness Month
Posted: 5/3/07 at 7:59pm
Well they certainly do stand out which is the point.... :-p
#4re: NF Awareness Month
Posted: 5/4/07 at 12:27am
good cause bump :)
and a bump so we can see gunn showing off his guns!
Ugly is beautiful
"My brother plays a drag queen... and I'm surprised he looks as good as he does in drag." - Adam Rapp
"thanks, abba. now i'll forever have an image of you as a tattoed hardcore straightedge grrl savaging people in the mosh pit." - papalovesmambo
"Yeah Abba. All the filthy crap you spew out there on those boards. I for one, am equally shocked. :-P" - AnnaK
#5re: NF Awareness Month
Posted: 5/4/07 at 1:16am
Haha! I wouldn't call them guns as much as pea shooters. 
#6re: NF Awareness Month
Posted: 5/4/07 at 1:24am
make a fist. then photoshop them. you'll be fine
Ugly is beautiful
"My brother plays a drag queen... and I'm surprised he looks as good as he does in drag." - Adam Rapp
"thanks, abba. now i'll forever have an image of you as a tattoed hardcore straightedge grrl savaging people in the mosh pit." - papalovesmambo
"Yeah Abba. All the filthy crap you spew out there on those boards. I for one, am equally shocked. :-P" - AnnaK
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