Posted by DJ on February 26, 1999 at 18:15:21:
I've been thinking about this 48 hour show since my last post. The more I think about it, the more I think we really need to take action on this one. I mean, this could be our "big chance" to get some information about us, as a group, out to a national audience.
I mean, why should we just sit back and hope that the folks at 48 hours mention us. If they do great. If they don't, we are left out again. Agree? I, for one, don't want to sit back and just hope they talk about clusters, I want to do all I can to make them talk about clusters. Know what I mean?
Here's what I'm thinking. If we ALL were to send 48 hours an email saying, if nothing else, "I am a cluster headache sufferer. Please tell the world that I am here on your March 4th show".
I have already told them that this site already has the largest 'collection' of cluster headache sufferers in the world, so if everyone put "ClustherHeadaches.com" in the subject of their email, they would know that we really are close, active, and banding together to try and get the message of cluster headaches out to the public.
The ultimate goal would be for 48 hours to mention this site on the show as a "cyber support group for people who suffer from cluster headaches", but the main goal of it is to let them know there are more of us out there than they think. If they got a billion emails from sufferers, they'd probably be more willing to at least mention something about clusters.
See where I'm coming from? Please post a follow-up to this message and let me know what you think. If we as a group are going to act on it, we need to do it ASAP.
Thanks,
DJ