Neal,

There is a charity org. that is structured closely to what you are proposing.  The founder there might be able to assist in discussing with you what would be required to make what you are talking about become a reality.

Maybe start there.  It's called Modest Needs.org

Good luck.

JustNotRight wrote on Aug 21^st, 2010 at 11:10pm:


       Sadly, I lack the power to change the laws by myself - that's a job for one's local and national legislatures. But we could all write to our elected representatives about these issues. The more letters - actual, physical pieces of paper rather than just emails - they get, the more likely it is that things would change. Of course, since we are such a small demographic due to the rarity of this disease, they would probably be less inclined to help us than, say, some large corporate contributor. But writing them letters is the least that we could do.

Quote:


     Both. Have 'em, have done research. Imitrex is crazy expensive! I learned a while ago that whether in cycle or no, to always get what the insurance company will cover per month (8 shots, or 4 kits, in my case). I learned that the hard way. I had a 4 month cycle a few years ago and I spent thousands of dollars just on Imitrex. The damned insurance company refused to accept my neurologist's "medical necessity" letter stating that I needed it every day (I've apparently gone chronic since this current session of Hell started, which is why I elected to have the CyberKnife procedure a few weeks ago)

Quote:


     As to "1st," as you said, only when the laws are changed.

     As to "2nd," when the politicians running the government stop taking large donations from the insurance companies. Like Potter said, "money talks, bullshit walks."

Quote:


      Which is disgusting and shameful.

Quote:


       Try to play a role in setting up a trust/charity for CH sufferers. And, thanks your post, sending a letter to all the elected officials at the federal level for my state.


Quote:


       And I thank you for them!

Redd wrote on Aug 22^nd, 2010 at 11:33am:


       Thanks for the info, Redd! I'll add them to the list of organizations I'm compiling that may be able to help out that I intend to contact in the future. That's the first step I am taking before I do anything else. This is going to be a long process, and it might not even pan out. But I'm going to do my best in the time available to me.

Neal,

I admire your enthusiasm and welcome your ideas.

There is already an established non-profit organization for cluster headache support and education.  It's called OUCH.

I don't know what exactly you were looking for when you visited the OUCH website.  OUCH does help individuals in obtaining needed pharmaceuticals, oxygen, masks, etc. but they don't publicize who they helped and what cost.  That is private information.

OUCH-US is an established non-profit organization dedicated to helping CH suffers and their supporters with information, finding doctors in their area who are informed on CH treatments, education of both sufferers and the medical community on what CH is and what the best methods of treatment are.

Every single board member or committee member works for OUCH as an unpaid volunteer.  OUCH gets its money solely through kind donations from anybody and grants from pharmaceutical companies, oxygen suppliers and the like.

OUCH has helped hundreds of people over it's 11 years of existence, and will continue to do so to the best of it's ability.  What OUCH needs are volunteers to fulfill much needed committees - like advocacy, family services, newsletters and the like.

OUCH doesn't charge for a membership because they feel that helping a Clusterhead should not cost that Clusterhead a dime, so they rely on donations and grants to achieve their goals.

As said, OUCH has been in existence for 11 years.  There is much that they have accomplished, but there is so much more that they want to accomplish.  They cannot do all that they want because not enough people are stepping up to the plate to volunteer a little time to fill much needed positions.

Your ideas are great.  Rather than trying to start a new non-profit, why not put your thoughts and energies into helping OUCH.  They would welcome you as a volunteer with open arms.

Sandy

I herd a statistic the other day that made me think of this discussion .

Americans have an estimated 7.4 billion dollars in loose change kicking about in jam jars ice-cream tubs etc maybe you could throw a loos change party or some thing ? should be able to get the funding ball rolling .

or maybe the government could set up an NHS style system so that your not relying on insurance companies at all .

allthoe I can't see that ever getting through you political system cos there's too much money involved .

erm maybe you should just ignore this post cos I know nothing of how things work over there , sorry 

God bless

Nigel

Brew wrote on Aug 27^th, 2010 at 10:58am:


Brew, I do agree with your Reagan quote...in general. I can say, though, that one of the reasons we moved from the south to the northeast corridor was to find state government that actually honored the intentions of the Americans with Disabilities Act. For all of its faults, we have found MA much more responsive , and helpful to, our daughter who is profoundly disabled. FL recognized the law but said, in effect, so what? Sue us. And they threw a lot of money at defeating any lawsuits that came their way. So while I'm not a fan of big government, I do think there are times and places where we need the big stick to help out the least among us who cannot help themselves. I'm also a big fan of public charities and churches jumping in where government ought not be. Perhaps I sound conflicted. I'm not, really. But I have no single rule of thumb here, either. As to Neal's suggestion, however, I don't think government is what he's looking for. I still agree OUCH is the key if there is more we can do. Blessings. lance