I had an idea today, and wonder if there is anything to prevent us from doing it.
       As we all know, cluster headaches are a life-changing experience and often expensive to treat. We also know that world-wide, most economies are in the crapper, and many people are unemployed. Others who do manage to have a job do not have the best health insurance, if they have it at all. (I am fortunate in that God has blessed me on both counts) Some folks cannot even afford the relatively inexpensive oxygen that is highly effective in most cases!
       As I pondered these things, I thought to myself, "Is there any good reason that we here could not start a trust and fund it with charitable donations, for the sole purpose of helping those of us who are truly in need of help, whether it be because of poverty, unemployment, lack of  insurance, or whose insurance won't cover the costs of our medications and visits to specialists who treat cluster headaches?" I cannot think of any good reason not to do this.
       Granted, there would have to be some kind of process for determining who is truly in need and who is not - I would hate for this trust/charity to be taken advantage of by those who could otherwise afford their treatments and medical care, but just want a "free ride," whether or not it takes away from those less fortunate.
       Also, we would need someone - perhaps a Committee or Board of Directors - to administer said trust/charity.
       We would also need competent legal advice in forming such an entity, establishing its structure, etc.
       I think that perhaps the Committee or Board should have as members at least one neurologist, a general medical practitioner, an attorney, an accountant, a tax specialist, and at least a few cluster headache sufferers as well.
       Naturally, we could set up a way for members and visitors to this fine website to donate to this trust/charity. But I would suggest that we also solicit donations from other, larger sources of money as well. For example, religious institutions such as churches, synagogues, mosques, temples, etc (please leave your religious prejudices at the door). We should also solicit donations from businesses, especially larger corporations, who have money to give - they could get a tax write-off and be able to tell the public how wonderful they are for helping us - (I have no problem with a donor corporation doing that, as long as they are helping us.) I would be happy to talk to the higher-ups at my employer (who shall remain nameless at this point in time) to get donations from them, if this idea can be made a reality.
        Also, we should give this trust/charity a name. Perhaps "The Bob Kipple Cluster Headache Charitable Trust" would be a good name? Any other suggestions?
        I realize that this would probably be a monumental undertaking, especially getting this trust/charity off of the ground at first, but I think it would be a great and worthwhile thing to do for those of us who are truly in need and need help. Let's not forget the old adage, "Nothing worthwhile is easy."
       So, members, what do you think? Is this "doable"? Is there any good reason why we shouldn't strive to make this idea a reality? And if we decide it can be done, how shall we go about doing it? Any other ideas or suggestions?
      

Quote:

Color me cynical, but I have yet to encounter any organization (especially the US Government) that has been able to figure this one out.

Usually organizations like this do more to inflate the self-worth of the founders than they do getting help to those who need it.

Like I said, color me cynical.

Brew wrote on Aug 12^th, 2010 at 11:41pm:


       Well we'll just have to make sure arrogant, self-aggrandizing asses aren't involved. And if they are, they get booted ASAP! Politicians definitely should not be involved!

Neal wrote on Aug 13^th, 2010 at 12:00am:

No We make those asses pay!  For someone Imitrex for a year!

Definitley a daunting task to organize something of the magnitude you speak of. But I admire people who try to do SOMETHING instead of just cursing the problem. As others have mentioned, there are a lot of "little" things that happen here where the less fortunate get helped out. Not of the magnitude you envision, but it's something. 

Joe

Kevin_M wrote Quote:
 

       Precisely why the committee/board should not be compensated. That way truly charitable people would be involved. Granted I did not say that in my original post, (the idea alone is a work in progress rolling around my brain) but that would be my suggestion as to eliminating the possibility of misuse of funds by the committee/board. What I am envisioning is a strictly volunteer administrative body.
      But yes, it is sad that there are all too many stories of "charities" set up where 80% of the donations go to the "executives".

Speaking of Charitable Ideas...

At work we held a food drive to help support the local food banks.  We had a contest to see who could come up with the best display and theme for the foods they collected, My Dept. Won!  Check out our display pic below.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
When completed Big Bird was over 7 1/2 feet tall !
Needless to say monetary donations are not shown 

In my own very very small way I help those who cannot afford certain items.   Every single one of us could do the same, but to do what you are proposing would indeed be a monumental task requiring a set-up of a non profit which could take years to develope, lawyers involved who charge big bucks, certain tax requirements. lawyers involved who do NOT work pro Bono,  etc.

Go to the OUCH link. After 11 years in existance THAT is exactly what it's purpose was. It has run on a volunteer basis for all that time and yet....It is all we have for the moment.   

To think that some, not all ...folks can have an altruistic view of what you propose isn't realistic.  There will ALWAYS be those with an agenda.  There will ALWAYS will be those with the need to control.

I do not wish to be the downer here but just being realistic because a lot of us here,  have been there-done that.

On a more positive note....I do believe that folks  should all be required to put the  city and state on their profile when they log on.  No addresses but....for example if someone logs on as a newcomer says he is in Madisonville, Ky. for instance and needs help...I know at least 2 people who will come to his/her aid immediately in this town.   

Small start?   of course.  But to that newcomer it could be life-changing.

Linda

       This will be a long post, as I am going to respond to many of you in one fell swoop.

       1. Racer1_NC wrote: "You will find many here that try to help in many different ways ... [to] try to fill the needs when they see them."
       Yes that is true and that is a great thing! This website has helped countless people in many, many ways. I did not mean to imply that it did not. Anything that we can do help each other is worthwhile, whether it words of advice, tips on getting to a good neurologist, discussions of various medications, etc.

     2. Linda Howell wrote:
       a) "In my own very, very small way I help those who cannot afford certain items." That is a great thing and I am glad that you do, as I am sure those who you have helped are glad as well. I would not say that's "small" - to a CH sufferer in need, getting things they need they otherwise would not is BIG!
       b) i. "... To do what you are proposing would be a monumental task requiring a set-up of a non-profit which could take years to develop ..." So? Does that mean it should not be done or attempted?
          ii. "... lawyers involved who charge big bucks, certain tax requirements, lawyers involved who do NOT work pro Bono, etc." Perhaps you are correct. However, many state bar associations have programs to help with numerous issues, and this might be one of them (although I will admit that such programs are usually  to  provide assistance to "indigent" clients with "smaller" matters). Most state and local bar associations encourage their members to do pro bono work, and I think that some require it. Also, some law firms, especially the larger ones, require their associates and partners to do pro bono work. Granted, that is often so that that firm can point to itself and say "look how great we are." But so what? If they can help set up such a fund, I don't give a crap if they use it for PR purposes. 
         iii. "To think that some, not all, folks can have an altruistic view of what you propose isn't realistic." Then just call me an idealistic dreamer.
         iv. "Go to the OUCH link. After 11 years in existence THAT is exactly what it's purpose was. It has run on a volunteer basis for all that time and yet it is all we have for the moment."   I did go there. I did not see anything there about a CH sufferer getting financial assistance. Also, OUCH is not the only resource for CH sufferers - there's this website, as well as the clusterbusters website.
         v. "There will ALWAYS be this with an agenda. There will ALWAYS be those with the need to control." So what? As long as they do not convert funds to their own use, do not otherwise commit fraud,  or  do not only help their "friends", I have no problem with it. And the "agenda" would be to help financially assist those CH sufferers with serious financial issues regarding their care and treatment in this global economic collapse.
         vi. "I do not wish to be the downer here but just being realistic because a lot of here have been there-done that." Really? A trust for the purposes I proposed was set up and somehow was a failure, or misused by people with an "agenda" or what-have-you? If so please give details so those people can be reported to the authorities (unless the statute of limitations for whatever crime(s) were committed by them has already run). Also depending on the nature of any alleged misconduct, and the applicable statute of limitations, a civil action could be filed against them. And in the case of attorneys, you can always report them to their respective state bars for disciplinary action, which could range anywhere from reprimand to disbarment, provided they did something technically unethical, such as "breach of fiduciary duty," which bar associations take an especially dim view of.
       Linda - please do not take these comments as a personal attack. I respect you and what you have done for fellow CH sufferers. I'm just responding to the criticisms you offered and do not mean anything personal by it, nor am I attempting to impugn your character or integrity.
     3. wimsey1 wrote:"Maybe even a "needs list" link where equipment no longer in use can be offered to those who might want to acquire it." I think that's an excellent idea! To anyone in "control" of this website,  I highly recommend this! Please do that you guys!
    
       In closing, to all the naysayers out there, I will say what Yoda said to Luke Skywalker while training in the Jedi arts on Dagobah in "The Empire Strikes Back" (yep, I'm a SF-loving geek):

        "Always with you what cannot be done."

Nani and pinkfloyd were a god send helping out the BBzzzzzzzzz.

                   Potter

Lettucehead wrote on Aug 21^st, 2010 at 9:49pm:


       Well, it's a start at least. I'm an attorney (only licensed in 1 state, though), but I don't know much about trusts (yet). If it's just up to me to start the thing it'll take about 30 years to set up! I'll do some research and see if I can get any other legal minds or organizations on board, and if there are any pro bono resources willing to help. Any other attorneys here please feel free to contact me - I would prefer via PM, but if you're more comfortable posting here, go ahead.
       And to the critics out there, I have no desire to "control" or "wear it on my sleeve." I just have seen so many posts of the financial difficulties CH cause for people (mainly re: medical and pharmaceutical bills), and my only "agenda" is I would like for there to be a resource for financial aid for them. Frankly, I'm busy enough as it is, and really don't want to be "in charge" of the thing or get any credit for it, even. Apparently that's hard for a lot of you to understand, but your misperceptions of my motives aren't my problem.

Neal:

If you really want to make some changes that will help people, you could start with changing some laws on how Ins. companies treat patients such as...

For Chronic Cluster Headaches Imitrex is an effective abortive yet Insurance companies limit the quantity of this drug to (generally) 4 shots per month.  If you suffer from, know about or have done research on Cluster headaches you will find that a person can get several of these headaches per day and can go through 4 shots in a week easily. 

This begs two questions;

1st When will the doctors be enabled to treat patients based on health needs as opposed to the dictates of the insurance companies?

2nd Why does our government allow Big Insurance Company sanctioned torture to be carried out on its people?

Aside from Imitrex being a good abortive medication we also have Medical Grade Oxygen as an effective abortive... yet many insurance companies (including medicare/medicaid) will not cover it for Cluster Headaches.

What will/can you do to address these problems?


Just my thoughts on the topic.

Neal wrote on Aug 21^st, 2010 at 10:19pm:


And therein lies the problem.   Good idea? Certainly, but someone has to design the program, agree to spearhead it and then recruit others to help run it. 

We're all busy, most of us work full-time.  Some of us volunteer with organizations outside of our regular work.  If you can find additional hours in the day or possibly add another day or two in the week.......................