Posted by Donna (63.14.15.25) on March 05, 2001 at 20:16:34:
In Reply to: Got a nice email from the American Coucil for posted by Bennie Sue Taylor on March 05, 2001 at 17:25:04:
You know, we have really come a very long way since chmb received it's first response. And that isn't so long ago. If we were to just double our exposure in the next 1-1/2 years, we'd have come a long way. But we have multiplied again and again in population and there are many more voices trying to be heard.
Great things are happening thanks to Bennie Sue's
Q , and the work of OUCH committees and general population who are working to make OUCH and Cluster Headaches words that people recognize.
Bennie Sue has worked very hard with this Q, overcoming many techincal obstacles, working with programming for the first time, and has made a most impressive tool. I will be one of the first to say " I knew her when".
Another idea that I sincerely hope someone has latched on to is the MRI and Medical Record Bank that was mentioned below. I must go back and look up whose idea that was. I might be wrong, but I think it was Paco's. That is a brilliant idea and we can't let that one go to the wayside.
For those of you who have not yet been involved in a committee or project, you have no idea of the devotion, the time involved, the sleep lost and the pride one feels when just one "feeler" is responded to. It is truly a labor of love. And you really! really! feel like a working partner with the others, who have become lifelong friends thur our introduction, and "relationship", by cluster headaches.
Love,
Donna