Posted by Lael Miller on April 24, 1999 at 08:59:50:
In Reply to: Re: AMA/Reuters posted data on new research... posted by Lee C on April 23, 1999 at 18:03:21:
Lee, I like this idea.
I'm at the end (almost) of a 2 month cycle and I've been thinking exactly that same thing. I just found this site during this last episode, and the light bulbs started going off in my head. Thanks, DJ. Thanks all of you.
Just like the web, we are a "virtual" group with no boundaries, no centralization, no one "voice". Let's scream till someome hears our pain.
And it works the other way,too. There may be developments happening, but IMHO not only we but the medical community is lacking in coordination based on the variety of drugs and treatments I see. And what about those poor bastards that haven't even been diagnosed yet?
Someones got to do this, and it looks like us.
I'm all for this approach. I'm only episodic, so I've got nothing I'd rather do for the next 10 months than eliminate the need for this site.
IMHO, though, we're going to need numbers if we want to make people listen. How many people, how many days, work missed, cost of insurance and medical, you know, the things Sally Struthers would say about us.
Can anybody provide credible links to data?
I'm guessing insurance actuarial stuff would already have this.
Here are my suggested goals:
To increase public awareness of Cluster Headaches through the media.
To promote a centralized research depository for the sharing of research and ideas.
To provide both public and medical community with access to this knowledge.
To promote the study of Cluster Headaches and treatments in the medical community through funding, grants and scholorships.
To promote pro-bono work efforts by the medical, legal, insurance, marketing, publishing, celebrity spokespeople, and others towards the relief effort.
To petition drug and pharmaceutical companies to increase their research towards treatments specifically regarding Cluster Headaches.
To raise funds and/or donations to achieve the above stated goals.
To remain a non profit organization.
Since my brain just came back from an 8 week vacation and it's 4:30 am, I really need a reality check. Does anyone else think this is a good idea? Or are my meds just wearing off...