Hi John. Sorry for the misunderstanding, but I have to agree with Al. There are far too many out there trying to take advantage.
On the positive side, I commend your efforts and achievements. The biggest struggle everyone has beyond dealing with the physcial ramifications of ALS, is awareness. As a side line, we just received an email that ALS Ontario has arranged to donate some proceeds from a basebell game between New York and Toronto next summer towards ALS. Ironically, this is an idea I recently threw out to our local committee, but didn't have the opportunity to uncover the appropriate contacts. Point being, if you have access to celebrities, they can be a voice. How many diseases have received recognition once the red carpet walkers back it. Look at a previous post I had regarding Michael J Fox and Young onset of Parkinsons.
We need loud, well known voices to speak on behalf.
It would be great if you could adapt our website so people did not have to enter information they may not be comforatable doing ie email addresses and have pages we can click on for pictures of the bracelet, stories and your progess.
Good luck, keep us posted.