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        New Message Board Archives >> Jul-Sep 2003 >> OUCH emergency med funding
        
(Message started by: don on Jun 29^th, 2003, 9:36pm)

Title: OUCH emergency med funding
Post by don on Jun 29^th, 2003, 9:36pm

the OUCH mission statement;

"The Organization for Understanding Cluster Headaches (O.U.C.H.) provides information and emotional support to cluster headache sufferers throughout the world.

At this time, providing an emergency fund would not fit into the mission of OUCH. A myriad of other logistical problems were also presented to me in a discussion amongst the OUCH BOD.

I know there has been an interest in creating this fund amongst the membership and that is why I am posting this here. PLease understand that creating such a fund is not impossible, It is just not feasable.

OUCH is operated primarily through various types of internet communications and we just do not have the luxury of monthly, sit down board meetings to work out projects such as this one.

This project has legalities attached to it and OUCH does not have a paid legal consultant.

That is just a sampling of the types of logistical problems OUCH will face if a project such as an "emergency fund" is to be established. The idea is great, acting on it will be a long and delicate process.

OUCH needs to continue to establish chapters than can physically interact and cross the T(s) and dot the I(s) to accomplish projects such as establishing emergency funds.

As a 501,c, (3) we are obligated to specific regulations. Undergoing a project such as an emergency fund needs to beresearched thouroughly so as not to put our non-profit status in jeapordy.

don

Title: Re: OUCH emergency med funding
Post by Marc on Jun 29^th, 2003, 9:43pm

Don,

I've been watching the discussion by the OUCH BOD and I agree.

But....... I don't see why there can't be a similar function provided here - after all, this board isn't OUCH. This is just a group of friends who meet here to support each other.

Is this best left as an "underground" effort as it is now?

Marc

Title: Re: OUCH emergency med funding
Post by don on Jun 29^th, 2003, 9:55pm

An activity such as medication funding may put this site and it's administrator in jeapordy. I really dont know. I think it should be kept as an email project.

Title: Re: OUCH emergency med funding
Post by Marc on Jun 29^th, 2003, 9:56pm

Sorry Don, I modified my post while you were posting. I agree......

Marc

Title: Re: OUCH emergency med funding
Post by Elaine on Jun 29^th, 2003, 9:59pm

I took up a fund for a man on here one time and what I did was collect the money then when he went to pick up his meds, I called the drug store and they chaged my credit card. The drug store even mailed me a recite with what drug he got.

I Think you have a good idea Marc!

Title: Re: OUCH emergency med funding
Post by don on Jun 29^th, 2003, 10:04pm

Elaine,

Simplicity is sometimes overlooked. Great way of doing it.

Pick a point person and keep refunding is all. That point person will have to have to have a keen sense of desrcretion though to avoid abuse.

Title: Re: OUCH emergency med funding
Post by Marc on Jun 29^th, 2003, 10:11pm

Make it a group of folks who already trust each other. Who knows where anonymous funds might come from ;D

Gee this is starting to sound familiar........

Title: Re: OUCH emergency med funding
Post by don on Jun 29^th, 2003, 10:25pm

And as OUCH president I should now step out of this conversation.

I am now anonymous.

Title: Re: OUCH emergency med funding
Post by Not4Hire on Jun 29^th, 2003, 10:35pm

*Ominus* funds...i LOVE it..... anybuddy wanna be *DeepThroat* ?

and can we Have *funds* with Leopards....o you said in "Jeopardy"......never mind.....

Shut TheFuckUpDon

Title: Re: OUCH emergency med funding
Post by FrankF on Jun 29^th, 2003, 11:00pm

Emergency funding for Imitrex, O2, etc. for people who cannot afford it is a good idea... but we have to be very careful (whether paid by OUCH or by individual donors here).

On another board that I belong to (survivors of traumatic brain injury), a woman posted for several months about her horrible financial condition... she was unable to work... had young kids... the roof was damaged and water was running into the house she rented when it rained... was in danger of losing custody of her kids due to her disability and her inability to care for them... a really heart wrenching story.

After many months of her posting about her ever worsening financial situation on the board, I sent her $900 (she needed it or else she was going to be evicted). Many other people sent her money too. And then a month or so later she disappeared.

Maybe her story was legitimate, maybe it wasn't. From what I was able to find out, it was as bad as she said. However, I am pissed off that she probably also made about $10,000 that month which is far more than she needed to remedy the situation that she faced at the time.

Title: Re: OUCH emergency med funding
Post by don on Jun 30^th, 2003, 3:23pm

That one has scam written all over it.

Sometimes you just have to cut your losses and feel good about doing the right thing regardless.

You did the right thing.

Title: Re: OUCH emergency med funding
Post by Charlie on Jun 30^th, 2003, 9:31pm

Sounds iffy here too.

You people are right. Find someone you know, help them and don't tell anyone.

Charlie

Title: Re: OUCH emergency med funding
Post by ijunG4 on Jun 30^th, 2003, 9:47pm

As a (new) OUCH member, I am against general emergency funding.

OUCH is still an emerging organization, and it can't do everything for everyone. Emergency funding is not the best use of limited resources. OUCH needs to help CHers as a group, not just individuals. Individuals can still help individuals, without involving OUCH.

I think all efforts still must be highly prioritized. An easy priority is to help chronic people first, before general help for episodics. Obviously, chronics are in much deeper sh*t than episodics.

One way I recommend OUCH to help chronics, then, is to focus on getting chronic CH recognized universally by government organizations as a (long-term) disability condition. This is supposed to be the minimum safety net for people to survive; yet, chronic CHers are not always even getting this basic recognition today. Knowing that chronic CHers will get at least some guarantee will indirectly give episodics some peace of mind in case things get worse.

I am an episodic, btw. I have the greatest respect for chronics.

I was going to post this content anyway on OUCH, but since Don started this here, might as well respond here...

Jun

Title: Re: OUCH emergency med funding
Post by don on Jun 30^th, 2003, 10:03pm

That was a good post ijung

Quote:

One way I recommend OUCH to help chronics, then, is to focus on getting chronic CH recognized universally by government organizations as a (long-term) disability condition.

And that is a good suggestion. Any ideas on how that could be accomplished? Any specific government org. in mind?

Title: Re: OUCH emergency med funding
Post by ijunG4 on Jul 1^st, 2003, 5:29am

on 06/30/03 at 22:03:49, don wrote:

And that is a good suggestion. Any ideas on how that could be accomplished? Any specific government org. in mind?

Thanks Don. Fortunately, I've never had to consider long-term disability myself. Not knowing how the mechanism works or who ultimately makes the policy decisions on what qualifies, I frankly don't have a clue.

It's hard to believe that ALL cases are judged case-by-case, because the government usually has strict guidelines for just about everything. I think the goal is to create enough awareness of the central policy-making entities (probably in D.C.) that will recognize chronic cluster more or less automatically as a disability condition.

I imagine what's happening now is that local offices will tend to see these applications as "just another guy trying to claim disability because of a lousy headache". We all fight for proper recognition of CH, but when it comes to these things, it's not just ignorance, it becomes a matter of injustice.

Is it possible to get a politician to support a bill in Congress, with heavy support from doctor groups and patients alike, that will achieve to recognize chronic CH as disability? The only burden on the sufferer, then, should be to prove that he/she indeed does have chronic CH.

I'm not familar enough with politics to really know the best approach. Like I said, I don't know the system well enough to give really meaningful ideas.

Maybe the chronic CHers out there who have gone through this process and have failed/succeeded can provide some meaningful input...

Jun

Title: Re: OUCH emergency med funding
Post by Brian_Y on Jul 1^st, 2003, 11:17am

Here are my deux centavos:

There is NO WAY I would contribute to nor condone doing a "fund". The implications and the possibilities of where things could go wrong are limitless. Not to mention the possible legal implications. The best intentions notwithstanding, the liability ALONE makes it precarious. What IF something happened to someone bankrolled by YOU and then the next thing you know, you have some asshat family member with a summons in their hand. Bye-bye ch.com...Bye-bye OUCH...

Would I personally and/or anonymously let someone borrow money from me and/or take unused meds of mine? Absolutely. But you are placing the community here in jeopardy by suggesting a fund.

--Internal Audit Guy

Title: Re: OUCH emergency med funding
Post by Nathan on Jul 3^rd, 2003, 9:33am

don,
i dont know if you had a chance to catch my post but i actually WAS approved by disability for cronic clusters. the main factor in that (i believe) was that im on o2 and that o2 seems to be the only med that works to abort my attacks; imitrex gives me severe chest pains as does migranol and any other abortive just doesnt work period. ssa does have strict guidelines as far as what is disabled, im sure youve seen the list of medical conditions they have that are "disabilities". but if you look into vocational rehab specalist, they have a list also. chs is not on there but they do look at 2 things, 1 if you can do the type of work you have done most of your life and 2, if there is ANY kind of work in your state that you could do with your current condition. example.... i was a cook most of my life with a brief period in telemarketing. the vovational expert at my hearing looked over his list and said it was not possible for me to go back to any kind of my old work (telemarketing with a full face mask on during an attack would sound like i was talking to houston during liftoff and having an o2 tank in a hot kitchen around open flame is just plain silly) and i could not do any kind of work in my state due to the frequency of my attacks and the time off i would have to take from work. no employer would put up with that. i dont know if thats the only reason i was approved, but it might help in your reasearch of getting chs listed as a disability. i mean lets face it, even if your not on o2, a cronic is going to be taking ALOT of time off work to either treat the attack or because he is just too wiped out from the attacks the night before.
my lawyer specalizes in disability claims, would you like me to talk to him and see if would be willing to help? its worth a shot anyway. anything to help, ---N

Title: Re: OUCH emergency med funding
Post by Nathan on Jul 3^rd, 2003, 9:35am