Posted by Todd (63.10.30.4) on July 08, 1999 at 18:39:44:
You may recall DJ's post saying that he had secured the www.clusterheadaches.ORG site name. This site (.com) has been a blessing for all of us. It's a place we can come and share our feelings, frustrations, fears, hopes, successes and failures. As I understand it (am I'm speaking solely for me, not DJ) DJ hopes to use .org as the homebase for OUCH-the non-profit Organization for Understanding Cluster Headaches that several people here are hard at work at bringing into existence.
So, what's my point? Well, DJ's creativity and dedication to the cause is INCREDIBLE! as this site proves. But we've got lots of folks here and someone may have some good ideas. What should the .ORG site be?
The selfish side of me (about 99% according to my wife) wants to keep .COM pretty much as it is. .ORG should be more the 'public face' of OUCH. Ok, so what should it include? Thats the question I'm posing here. One humble suggestion from me -- how about a page/board devoted to descriptions? Similar to a Guest Book format, instead of a Message Board, but where the guidelines say, describe your CH. Frequency, cycle, headbanging, you know the stuff. Not only could this help explain CH to the public, it would be a resource to us for the comparison we do here so often.
Well, if you've read this far, hang in for a few more sentences. Might I request that, instead of posting suggestions here to the board, you email them to me? This is my wacky idea, and I don't want to clog the board or expect DJ to read them all and then copy them down off the board. Pass the ideas on to me and I'll summarize them and forward to DJ, as well as post a summary here for all to see. I PROMISE NOT to censor or omit any ideas. This ain't about my ideas, it's about yours.
T