Posted by James (64.217.53.101) on March 03, 2001 at 16:18:32:
I'm sure I'm going to start something nasty here but it's urgent that some questions be answered about an organization for people with cluster headaches.
I've posted here on occasion and ask some questions last summer thru e-mail to one person. If OUCH is truely interested in growing membership and really getting something accomplished they must be prepared to answer many question. I understand that OUCH is set up as a non-profit, therefore the books must be open and meetings must be open and published.
Before I go further, what I've mentioned may be happening. I don't know what is happening with the organization. I see no reports of meetings or information as to what it is actually doing. What would my dues be used for?
I do read with disappointment that another annual meeting is scheduled. I've yet to figure out how that will help advance the cause of clusterheads. Maybe there is more money than I know about.
On the other hand, maybe this is not the organization I would be interested in. "Organization for Understanding Cluster Headaches" really isn't what I'm personally interested in. I would like an organization that puts pressure on the medical community for more research to cure this terrible disease which has and is ruining thousands of lives and I can tell you, from experience, it doesn't get better with age.
This web site, as a meeting place is wonderful and a great place to start. Also having an official name and organization is good. My question is what has been done and what is planned to be done in the coming year that will actually further the cause. If we are talking about an international organization it will take more than selling T-shirts or bumper stickers to get attention from those who really count.
Maybe I've got it wrong again. Maybe OUCH is a social organization and is only for the purpose of supporting others with clusters. Nothing wrong with that but again I would be looking for more. I don't have to write a check to get support from my family and friends.
Have I said enough to get everyone really angry at me? I'm sorry but these questions must be answered for me and some others, like my doctor. I can not push my care provider to get involved in a group that isn't serious and "professional". We must be prepared to deal with the "medical community" and as many of you know, its hard to break into that hard core community.
I hope that all the above questions are answered and I just haven't found them so I can humbly ask your forgiveness. I'm sure that there is someone who is working their butt off and that person doesn't need some jirk like me questioning what she/he is doing.
It is very important that I cut to the quick of these questions and fine some answers. Please pardon my directness. James Adcock, Cameron, Texas