|
Help find a cure!
When I first heard that my cousin Shannon had NF was in total shock. I had never heard of this condition before. All I knew for sure was that she was in pain and that there is no cure or effective treatment. This was not acceptable to me so I starting looking for a way to help her and her family deal with this very difficult situation. I knew that there had to be something that I could do, something that would make a difference.
While searching for information I visited www.NF.org (it has since changed to www.CTF.org ) . I found a phone number and I called it. I spoke with a woman named Anita Carter. She is very kind and was extremely helpful. She understood what I was going through and she seemed to know just how helpless I felt. She took the time to educate me with regard to Neurofibromatosis and informed me of the latest research. Although the research is promising, it is also very expensive.
That is when I decided that the best way I could help my cousin and the hundreds of thousands of others suffering from NF would be to raise NF awareness and money for research. I needed do something substantial, something that would keep my mind and body very busy. I decided, that something, would be to run the Disney Marathon as a fundraiser for NF research. Keep in mind that I am not an athlete. I am just a regular person who wants to make a difference. In fact when I first started training (7/1/2002) I could barely run a half-mile. I am totally committed and I have been training everyday (5:30am) since. When I grow tired or catch myself complaining about minor aches & pains I remind myself that people with NF deal with pain everyday.
Shannon has become my greatest inspiration and I will not fail her. Everyone deserves the chance to lead a normal life. People born with Neurofibromatosis will not have that chance without our help. My best advise for dealing with NF: GET INVOLVED, it helped me and I believe it will help you.
|