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        Cluster Headache Help and Support >> Cluster Headache Specific >> Non Profit for Clusterheads
        
(Message started by: CC_stole_my_Harte on Aug 1^st, 2007, 4:07pm)

Title: Non Profit for Clusterheads
Post by CC_stole_my_Harte on Aug 1^st, 2007, 4:07pm

Hi guys, I don't post a whole lot here, but I have a feeling that I will be doing alot more. I have been a supporter for four years of my wonderful boyfriend. You would think that after seeing this happen to him for years, it would get easier to deal with. Well, as many of you know the answer to that is NO! I am sick of this helpless feeling and since there is jack squat I can really do for him, I feel like the only way I can comfort my own feelings of helplessness is to help the cause. Along with a friend of mine, I am looking into starting a non-profit for the benifit of research into this horrible affliction. I thought the best place to start would be here. Any advice you can offer in terms of which organization is should send any funds to for research, what kind of things would be good ideas for raising funds or awarness, or anything at all you would like to see affiliated with a non-profit for clusterheads. I would like to do three things mainly 1)raise awarness 2)raise funds for research and 3)provide some mental/emotional help for those that have/supporters of those with this condition. (Because I've felt like I needed it at times). Also how can you be sure that the funds you have provided are activley being used to find a cure? Thanks in advance for all of your help!

Jamie Edwards

Title: Re: Non Profit for Clusterheads
Post by billyjoe on Aug 1^st, 2007, 5:04pm

The MAPS is looking for money to do a study on Psilocybin research for the treatment for Cluster Headaches. This is good cause and has reputable people.

http://www.maps.org/research/cluster/psilo-lsd/#cluster

Has your boyfiend tried mushrooms or seeds?

Title: Re: Non Profit for Clusterheads
Post by CC_stole_my_Harte on Aug 1^st, 2007, 5:11pm

Mushrooms or seeds? I don't think so. Do you mean like illegal drugs? I know he did his fair share when he was like 15, but I don't think he was thinking about his clusters at the time, haha (He's had them for 21 years btw, since he was 6)

Title: Re: Non Profit for Clusterheads
Post by CC_stole_my_Harte on Aug 1^st, 2007, 5:24pm

Wow, I was really impressed with that MAPS site. That will def be where any proceeds go.

Here's to LSD being taken off the Class 1 list of Drugs with no medical benifits! [smiley=me&mb.gif]

Title: Re: Non Profit for Clusterheads
Post by Redd on Aug 1^st, 2007, 5:24pm

There is already a Non-Profit for Clusterheadaches called OUCH. There is a link to the left that will take you direct to the web site.

you can also email them directly at

contact_ouch@ouch-us.org

Title: Re: Non Profit for Clusterheads
Post by CC_stole_my_Harte on Aug 1^st, 2007, 5:28pm

I guess there is a difference between being a non-profit and raising money to donate for research...? I was thinking of things like having a run, show, or something and donating the proceeds to research- and also raising awarness esp in my area. Because if it wasn't for Chris, I wouldn't know WTF a cluster was (fortunatley for me)

Title: Re: Non Profit for Clusterheads
Post by Redd on Aug 1^st, 2007, 5:56pm

I'd contact them with your ideas and see what can be worked out.

Title: Re: Non Profit for Clusterheads
Post by Bob P on Aug 1^st, 2007, 6:03pm

In the past OUCH has raised money and donated it to research (MAPS). Haven't heard much about the research in the past year but maybe if you contacted OUCH it would rekindle a flame.