Posted by JD on June 30, 1998 at 21:18:57:
In Reply to: Possible media blitz? posted by DJ on June 29, 1998 at 04:37:20:
I think this site is the story that could bring the kind of attention to clusters that might alert some drug companies to the money to be made.
1) May I suggest framing the release/story about the site, how quickly it has grown, and how intense the interest of the sufferers is. Let the clusters, and how little information or help is available, be the backdrop for the creation and running of the site.
2) Try to cultivate correspondence with the internet reporters at the Wall Street Journal, or the New York Times. You can usually find their E-mail address in their colums. Send them the story and ask them if they are interested, or if not would they help you by telling you why. Look also at some unusual publications that cater to business as an illustration of why the internet is different.
3) Get a release / story up here that we can use to start a grassroots effort to alert and influence our local newspaper, radio and TV reporters that cover the electronic beat. It's best if it doesn't come directly from the source but rather from a local indivual that is familiar with the story firsthand.
4) DJ, remember, our real goal is to get one good drug company interested enough to start putting some real money into finding medications or techniques that work.
5) It's worth thinking about a new name for this evil. Clusters describes the frequency of the headache, not the severity. That's why nobody relates to it. Let's also do a brainstorm on this message board for a new, more descriptive name. Something that creates an immediate mental image of intense pain and agony. The search for a new name could also be a "hook" for the story -- how we are trying to explain the pain to our families and coworkers.
Just some thoughts. You are on the right track, but don't expect immediate results -- unless we are lucky. Get your story up here so we can look at it, you can get some suggestions for improvement. Then let's rock and roll.
Jim Rosen