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?
      

It would be monumental to start one here. Not saying it couldn't be done.  Most of us belong to OUCH. Have you joined our organization?  We have a board in place already there. This is the link to it and you might want to run your ideas by them.

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and this is the message board to OUCH.

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Quote:

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.

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.

[quote author=4E6D696D040 link=1281667440/1#1 date=1281670089]It would be monumental to start one here. Not saying it couldn't be done.  Most of us belong to OUCH. Have you joined our organization?  We have a board in place already there. This is the link to it and you might want to run your ideas by them.

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Jimi,

     No, I haven't joined - yet. Thanks for the links. I'll join and post the idea there in the near future - probably tomorrow or this weekend.
    But it wouldn't necessarily need to be affiliated with this site or any other, really. Just we get some people together and make this a reality. But yes, either way, it would be a monumental undertaking. But wouldn't it be great if we could establish such a charity? It really bothers me reading all the posts here by the many people in dire straits with no real help due to financial issues! It's just plain evil! :'(

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

Quote: 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. 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.

       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!
         

It's a good idea Neal.

You will find many here that try to help in many different ways.....not to the level that such a fund would help but none the less try to fill needs when they see them.

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

Brew wrote on Aug 12th, 2010 at 11:41pm: Quote: 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. 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.        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!

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

I agree with Bill.


Quote:

It's a good idea Neal. You will find many here that try to help in many different ways.....not to the level that such a fund would help but none the less try to fill needs when they see them.

Neal wrote on Aug 12^th, 2010 at 10:44pm:

Is there any good reason why we shouldn't strive to make this idea a reality?

With a composition of


Quote:

... unemployed. Others who do manage to have a job do not have the best health insurance, if they have it at all.

it appears the vast majority of whatever contributions goodheartedly given may need to be allocated to,


Neal wrote on Aug 12^th, 2010 at 10:44pm:

... one neurologist, a general medical practitioner, an attorney, an accountant, a tax specialist, and ...

these may not be such charitably eager participants for the responsibility of the potential flow requiring the spirit and coordinated time involved for continued service dedication. 

Emulating something like Bob Wold has managed to coordinate for our purpose is "monumental", and the funds needed, too. 



Neal wrote on Aug 12^th, 2010 at 10:44pm:

... solicit donations ...  from businesses, especially larger corporations,

The nitty-gritty of charity for CH is competitive, unending perseverence stated extraordinarily persuading.



Neal wrote on Aug 12^th, 2010 at 10:44pm:

... it would be a great and worthwhile ...

 

Words not understated, but somehow Bill's reply reflects a hint of knowledge in undertaking the idea without negativity.




Neal wrote on Aug 12^th, 2010 at 10:44pm:

Any other ideas or suggestions?

And also encompasses an accomplished self-sufficiency meriting mention itself as a result of the understanding from the afflicted and supporters utililizing and appreciating this board's creation.  Your's comes across, a spark.   :)





Bill, I hope to not have misinterpreted your post, but it hit me as a concise comment.

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

Quote:

But I admire people who try to do SOMETHING instead of just cursing the problem.

You wanna change the world? You start with your corner of it. And that's where it ends, too.

Trust funds are a way to wear it on your sleeve.

Kevin_M wrote
Quote:

it appears the vast majority of whatever contributions goodheartedly given may need to be allocated to, Neal wrote on Aug 12th, 2010 at 10:44pm: ... one neurologist, a general medical practitioner, an attorney, an accountant, a tax specialist, and ... these may not be such charitably eager participants for the responsibility of the potential flow requiring the spirit and coordinated time involved for continued service dedication.

 

       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". >:(

Neal wrote on Aug 12^th, 2010 at 10:44pm:

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?

Money talks and bullshit walks,  drop a dime on DJ .  Ya gotta start some where.

        Potter

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.

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When completed Big Bird was over 7 1/2 feet tall !
Needless to say monetary donations are not shown  ;)

Big bird saves the day. ;D

Joe

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

Linda_Howell wrote on Aug 13^th, 2010 at 8:37pm:

In my own very very small way I help those who cannot afford certain items.   Every single one of us could do the same, 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.

I have to admit, my first reaction was the same as most everyone has written. And I was thinking exactly what Linda wrote. Introduce money into any situation, and you change the dynamics often not for the better. But introduce the concept of mutual aid and assistance, such as this site offers, and you can see a powerful movement begun. We all would help in whatever way we can and are able, and we have seen such help offered at various times. In my short time here I have received tons of info and advice, and even practical help in securing what I need. This, I think, is the way to go. Maybe even a "needs list" link where equipment no longer in use can be offered to those who might want to acquire it. Sort of like a "Craig's List" for CH sufferer's? Just a thunk. Blessings. lance

       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."

You wanna know why a lot of us don't make a public spectacle of helping our brothers and sisters? Here's the answer, but you're going to need to read between the lines:

Often times you will see someone post here that they left their PRESCRIPTION MEDICATION at somebody's house. They'll ask if folks wouldn't mind looking around to see if they left it there, and could they please send it back to them.

If you're not getting the hint from this, PM me.

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

                   Potter

Hey Neal!
I, as do many others on this site, completely and absolutely applaud your enthusiasm and altruism.  I think what has made me hesitate is the sheer scope of the project.  However, if you are willing to be the spearhead, I offer my services (for what they're worth) to do what I can... 

Unfortunately, I will be of small help in setting up such a monumental undertaking - I have no legal or business expertise at all.  What I do have though, is medical knowledge.  I would be happy to answer your medical oriented questions, should you have any, to the best of my ability...  Please let me know if I can be of help.
:)

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

Hey Neal! I, as do many others on this site, completely and absolutely applaud your enthusiasm and altruism.  I think what has made me hesitate is the sheer scope of the project.  However, if you are willing to be the spearhead, I offer my services (for what they're worth) to do what I can...  Unfortunately, I will be of small help in setting up such a monumental undertaking - I have no legal or business expertise at all.  What I do have though, is medical knowledge.  I would be happy to answer your medical oriented questions, should you have any, to the best of my ability...  Please let me know if I can be of help. :)

       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.

This is a fantastic idea but I just can't see how it could possibly work .

even if all the red tape stuff could be sorted and the incredible amount of required funding found, how the hell do you go about deciding who gets the benefit of the charity ?

It opens up a whole new can of worms when you have to play god and decide who gets and who don't / who's' genuine and who's' not.

I guess it's a problem allot of charities have, but it just seems monumental when you are talking about who to buy prescription drugs for.

I think that personal help from individuals is the best way.

The free cycle idea for equipment on this board is a very good one.

God bless

Nigel

PS Neal could you possibly put a blank line between paragraphs in your posts pls  makes for much easier reading

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, your head is operating in a perfect world. God bless you for that.

Unfortunately, we live in the real world - the imperfect one. Knock yourself out if you're so inclined. I'll continue helping the best way I know how - under the radar.

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

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.

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.......................

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.

Headache Boy uk wrote on Aug 21^st, 2010 at 10:41pm:

This is a fantastic idea but I just can't see how it could possibly work .

   
     Thanks, and yes, it would not be any easy thing to do and would have to be a collaborative effort with numerous people and/or organizations involved!


Quote:

even if all the red tape stuff could be sorted and the incredible amount of required funding found, how the hell do you go about deciding who gets the benefit of the charity ? It opens up a whole new can of worms when you have to play god and decide who gets and who don't / who's' genuine and who's' not.

       That's the really difficult part (in addition to actually getting the thing set up and underway)! And I have no intention of playing God, I'll leave that up to God! But it is a good point and I doubt that it would be possible to make sure that 100% of the time no one takes advantage of it, assuming it ever gets off the ground.


Quote:

I guess it's a problem allot of charities have, but it just seems monumental when you are talking about who to buy prescription drugs for.

       It wouldn't be buying prescription drugs for people, it would be providing financial assistance to people so they could buy needed medications, pay for doctor visits, medical procedures, and the like.


Quote:

I think that personal help from individuals is the best way.

       I agree, and I know that many people have gotten assistance of one kind or another from the members here, at OUCH, etc., and I applaud that heartily. I'm a big believer in individuals helping individuals. But still, I doubt that many of us here could pay for just one person's medical, prescription, etc. needs, as well as our own individual needs in those  areas. I wish we could! But sadly CH can have a drastic negative impact on one's job, personal finances, etc. 


Quote:

The free cycle idea for equipment on this board is a very good one.

 
       I agree - Lance (wimsey1) came up with a great idea there, and again I say it should be implemented as soon as is practicable.


Quote:

God bless

       You too, Nigel!


Quote:

PS Neal could you possibly put a blank line between paragraphs in your posts pls  makes for much easier reading

     Sorry about that! I'll try to do better in future!

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

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...

       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:

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.

     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:

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?

     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:

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.

      Which is disgusting and shameful.


Quote:

What will/can you do to address these problems?

       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:

Just my thoughts on the topic.

       And I thank you for them!

Brew wrote on Aug 22^nd, 2010 at 12:19am:

Neal, your head is operating in a perfect world. God bless you for that. Unfortunately, we live in the real world - the imperfect one. Knock yourself out if you're so inclined. I'll continue helping the best way I know how - under the radar.

       I think it's my "heart" that is operating in the "perfect world." My head is firmly in and all too aware of the "real world." And hey, any help, large or small, that we can give each other is to commended. That's one of the great things about this board. Other than the people here, I have only met one real live person who has CH and knows what's it like living with it. Anytime someone tells me "Oh, I have cluster headaches too," I ask them to describe what  they're like, and except in that one case, they're always full of crap. I had one guy tell me "yeah, I've have one or two of those. My whole head hurts when I have em. Excedrin is the best thing for them, you should give it a try" That's when I know I can ignore anything else they say about cluster headaches.   

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

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.

       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.

No optimism here.  One side Optimists other side Pessimists! Wonder if it's pain side or PF side?

Never will work, nope your right!  Did I hear the Earth is Flat?
Wow, how did we ever get by that I wonder?

Neal,  You want a headache start a charity for Cluster Head's, Yeah I agree, it can't be done, save your head Neal, it will never work. 

Not enough people suffer to pay the bill!  No money no research in to finding an answer.  Just have to do our own research to find the answer.

Hope your feeling better Neal. 

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

Really good advice, Sandy. This board does what it does very well: provides info and support, and as an online community, is rather diverse and tight. Not saying Neal's ideas aren't helpful and good, but I agree...OUCH is a good venue for them. Blessings. lance

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

Quote:

"Government is not the solution to our problems. Government IS the problem." Ronald Reagan

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

Quote: "Government is not the solution to our problems. Government IS the problem." Ronald Reagan

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