Posted by Jackie on April 23, 1999 at 10:53:17:
I saw something on TV last night that really made me think. A couple discovered their two sons have a very rare genetic disease. This disease will result in their sons' death by age 6 if a cure is not found. So, the couple embarked on a program to help a cure to be found. They did a lot of research to find who, around the world, was doing research on the disease. They actually had the financial resources to meet with some of these people. In particular, they had very positive feelings about a researcher in Israel. They then were able to raise money, through a foundation they set up, I think. They funneled this money to the Israeli researcher. He completed a major step in finding a cure, which is locating the gene for the disease.
The main point here is how much one person can make a difference. The disease, like clusters, is rare. Even though clusters are rare, there is SOME research going on. For instance, some of our clusterheads have participated in research in England, in which they allowed clusters to be induced so the researchers could see what was going on in the brain. I also know that there was a recent post about clinical trials for a drug that can be used for clusters. Several places doing these trials were posted on this site.
If we could get the wherewithal, which is hard when you're suffering with H/As, we could do what that couple did. We could set up a foundation, figure out how to raise money, and funnel money to cluster research. This would take a lot of time and energy and research ourselves. I'm not even saying I could do it right now, because I'm having to deal with a chronic H/A situation. But it's a thought I wanted to throw out. In particular, those who are episodic might be able to devote a bit of time to doing something.
Well, for whatever it's worth, I just wanted to mention the idea.
Jackie