Posted by Bob Johnson (208.234.124.40) on September 15, 1999 at 07:49:33:
In Reply to: Yes, but ... posted by Ted on September 14, 1999 at 16:33:52:
I used the wrong title. Before we can lobby we need some information about what kind of funding is presently being directed to research. In terms of the number of folks with CH, ch.com participation is not going to be an accurate representation of the population. This group has self-selected to find the site and be involved; the bulk of folks are out there alone. NIH is sophisticated enough to know how many people are affected since they have demographic data which are not readily available to us.
My suggestion would be to make contact and seek some basic information: who is in charge of headache research (there are several separate organizations within NIH involved in different aspects of medical research); how much money is allocated to headache; is there a separate focus/funding for CH; how could we aid them in a research project (we have a lot of experience to share). Which is to say, lobbying requires a focus and focus follows information.