I have been posting in the health section about my niece. She was diagnosed last week with huntington's desease at age 18. It is very progressive and they have given her from 5 to 20 years to live. But considering how fast her symptoms are coming on it is not looking like the latter. We have cried many tears this week. And when the 2nd opinion came confirming it...well you can imagine.
So to the point, I have done a ton of reading and it turns out there are only 30,000 diagnosed americans who actually have this desease so because of that research is not top of list here. Which is sad but they have other things to work on and I understand that.
So I was at my lbs the other day and asked Mark (owner,mechanic etc..) if he would be willing to do a bike ride for huntingtons desease? He said oh yes definatly just to let him know when and how etc.. and he would love to be a part of it.
I have never done anything like this. Has anyone here ever organized a fund raiser ride. Can anyone steer me in the right direction? I was thinking you know the entre fee could all go to the huntington's research etc.. I could print up flyers and hang up around town. Or is there a way to go through some other organization that helps you set this up?
We have so many wonderful places we can organize a ride at where we live so that is not an issue at all and we have like 6 bike stores I could hit up and get to put up flyers for it.
Thank you for any input you gals can give me. And please send healing thoughts.
