Posted by Carl D (18.104.22.168) on March 03, 2001 at 19:54:08:
In Reply to: Is OUCH a Serious organization? posted by James on March 03, 2001 at 16:18:32:
Consider this. As to date, very few in the public eye know about Cluster Headaches. For years, we have been searching for a 'cure' to this ailment. To date, we still have none. We do have wonderful people like Dr Peter J Goadsby on our side working for us - but no cure or new wonderful treatment.
Some of us are not episodic. We are chronic. We know the hell of CH day in and day out - sometimes even losing a day as to where we are at. Some of us are suffering under the scrutiny of ignorance brought on by lack of public knowledge of Cluster Headaches. What we need is to educate not only the public, but the system as well. This is going to take alot of work to do. O.U.C.H. is a very new organization when you like in respect to many other larger Organizations that started off on a smaller scale; because alot of legwork had to be done. Today, alot of that legwork can be done from your home computer and your telephone.
All of us have a voice; and we need to be heard.
If you have read through the much information online from O.U.C.H., You can sympathize that we are just getting things off of the ground here.
Bob G is right in saying that we have a start, but it will take much more to make it not only a national voice - but International as well. One of our first goals should be to get the word out about CH. We know we cannot find a cure right now, but many of us who suffer from CH are unheard; and we suffer with an affliction that is either unknown by most or misunderstood by those who have "heard" of CH, but really don't know what it is. We have to be the ones to get the word out through marketing brochures with the facts, and getting them out to the public. We need a Television commercial that will grab the public eye. We need things to make it well known that cost substantial amounts of money, out of the league we are at right now. Commercial time will cost money. These things may be far into the future, or who knows - with enough manpower to do it; a sooner reality.
I could not afford to re-join O.U.C.H. this year as I am ate up in bills. As much as I would've liked to, I couldn't. If I really wanted to be a member, I know someone like Jonny or someone would sponser me. If that is what you need, they are there. However, I am happy to say that I have decided to work with O.U.C.H. and do whatever I can for this organization. I believe in O.U.C.H. as much as I believe it will take CH sufferers to get the word out, change the way Cluster Headaches is perceived not only in the public eye, but the medical community as well. Once we accomplish this, then we can push for more funding for research. What little we have right now would do nothing. But once we have the public joined in our cause, it will put great pressure upon the medical community to get "SERIOUS" with CH treatment. If you really want to know if this is a serious organization, then why don't you join into the work and find out.
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