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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH Foundation/Organization anyone?
        
(Message started by: shabada on May 13^th, 2006, 1:44pm)

Title: CH Foundation/Organization anyone?
Post by shabada on May 13^th, 2006, 1:44pm

Does anyone know of a group (medical) that is solely funded for CH? I am curious why such a painful and life altering condition has not had more attention paid to it. I am obviosuly new to this and I am trying to understand this condition the best I can. I also understand that a small portion of the population deals with this condition, but something this intense needs to have more attention surrounding it. Ultimately, I would love to know where information and possibly money for research could be directed to. This website is amazing and since I discovered it a week ago I have been glued to it. I really appreciate everyhting this website and the people have done for me. It is great to see people come together and help one another as well as exchange vital information. In the end I want to know if there is something more we can do? Is there something more people would want to do, but feel there is something holding them back? I would really like to get involved the best I can. Like I said I think this website is an amazing outlet, tool, and so many more things, but I would love put effort towards finding a solution to CH. Just a thought. If anyone has any information please let me know and thanks for the time.

Title: Re: CH Foundation/Organization anyone?
Post by Redd715 on May 13^th, 2006, 1:57pm

If you look over to the left, There is a yellow button that says OUCH website.

OUCH is the non profit Org. dedicated to just what you have questioned.

Please feel free to look around by clicking or following this address.

www.ouch-us.org

Pegg

OUCH Board of Director member and Secretary of the Org.

Title: Re: CH Foundation/Organization anyone?
Post by Linda_Howell on May 13^th, 2006, 2:22pm

Quote:

I am curious why such a painful and life altering condition has not had more attention paid to it.

Because they ARE so rare. Very little incentive for Pharmaceutical Co.'s, Scientists etc. to put their money into something with such a small percentage of the population experiencing them. The fact that we spend a whole lot of money on Imitrex and other drugs doesn't seem to matter to them.

Linda Howell, Family Services of O.U.C.H.

Title: Re: CH Foundation/Organization anyone?
Post by Garys_Girl on May 13^th, 2006, 3:12pm

As Linda pointed out, the condition is rare. Approximately 69 people out of every 100,000 have it: this is less than 1% of the population.

That means that putting Research and Development dollars into research for a "cure" for cluster headaches is a losing proposition for pharmaceutical companies. They look for diseases or conditions that afflict a large patient population (typically in industrialized countries, not the third world) so that they can recoup the R&D dollars spent and make a profit. There are several diseases that affect a large patient population in third world countries (particularly Africa) but for which there is no direct cure because despite the large patient population, those patients cannot afford treatment. And many of those diseases are often lethal, and result in anywhere from hundreds to tens of thousands of deaths a year. (Ebola and African Sleeping Sickness pop to mind).

Most of the drugs used to "treat" CH were developed for other purposes. Many are anti-depressants; verapamil is for blood pressure, and many were developed to treat migraines.

Laurie

Title: Re: CH Foundation/Organization anyone?
Post by BarbaraD on May 14^th, 2006, 6:48am

Before we can work for a "cure" for CH - we have to find the cause. There are a few doc's doing research on them, but so far .... hopefully one day we'll know the cause and then can work on a cure.

Hugs BD

Title: Re: CH Foundation/Organization anyone?
Post by clusterdeb on May 14^th, 2006, 10:58am

[ the condition is rare. Approximately 69 people out of every 100,000 have it: this is less than 1% of the population.

Don't you feel like you won the lottery, Only I could be so lucky.

Title: Re: CH Foundation/Organization anyone?
Post by tommyD on May 16^th, 2006, 3:22pm

In fact. it is rarer than that. 69 out of 100,000 is less than one-tenth of 1 percent - .069 percent, to be exact. In the northern latitudes, the percentage is said to be higher, I think I recall .140 percent. In round numbers, you could say one in a thousand...

-tommyD