I started a charity to help people like us...ideas?

Discussion in 'Fibromyalgia Main Forum' started by confetti11, Jan 15, 2010.

  1. confetti11

    confetti11 New Member

    Like many people, I've gone completely broke trying to get better from something like CFS. I did actually get better...I would say from about 30% to 85-90%...but it still takes gobs of money to stay there. For now. Of course, the eventual goal is my body will be able to function on its own without a lot of intervention. But for now it's still lots of supplements and IVs, etc.

    I have gotten insanely frustrated over the years at not only the lack of support in general but the lack of financial options to help fund treatments. Insurance doesn't cover anything I do (just about) so the last 10 years of dealing with this has been out-of-pocket. With being unable to work normally or at all 3/4 of that time, it doesn't take a genius to see how quickly you can go broke. This isn't news to anyone reading this, I'm sure.

    So, I'm trying to beat the system by forming a charity. By helping people using a similar strategy I used to get well, I'm interested in funding people's medical costs for, say, a year at a time. I want to help people implement a strategy to get well, including using a medical-detective-type doctor.

    This is in the ground stages for me. I'm not sure where it will go yet. I haven't collected any money yet and am in the process of figuring out how to write the grants, organize fundraisers, etc.

    One of the goals of this charity is to help people get a life back...to be able to simply work again to support themselves. To take the financial pressure off for a while so they can intensely pursue healing modalities and then perhaps later give back themselves.

    Anyway, I'm curious about feedback...like I said this is new and I'm gathering ideas. I have the 501c3 status and looking to take off soon.

    The kind of money, from my experience, it takes to get better is so great that the charity at first may only be able to help a few people and I've been criticized for that but my feeling is, if one person gets better, they can help another person do the same.

    We seem to be dealing with this mostly by ourselves, without any real help, especially if insurance doesn't cover your treatments. I felt like I wanted to do something. Welcome your ideas.
  2. quanked

    quanked Member

    501c3! Achieving such a status is no easy task.

    A couple of ideas--as part of your agency's vision/mission statement you might want to revise to include a strong commitment to lobby congress to create laws and regs that require insurance companies to pay up.

    I have already forgotten my second idea : ) !

    How many people do you have involved in your agency? How many board members? Any medical people?

    I understand your motivation for developing such an agency. One thing--even if I had funds to pursue the help I need I would also need an advocate/someone helping me wade my way thru the various systems as well as someone helping me to keep accurate and detailed records--to help my understand where I have been, where I am at and where I am going at any one given point in time. These kinds of records would also be very important to your organization to verify where your funding is going, secure more funding, etc.

    I am curious to learn more about your organization. I know that in the realm of grants that monies are not often given out to individuals as it is seen as not an effective use of funds. However, I do agree that what you are considering has a potential to create a very strong foundation of individuals who would be very likely to "give back" in a way that could build into something quite large and amazing over time.
  3. goodguess25

    goodguess25 New Member

    Some of us are unisured to begin with so seeking treatment is even more expensive than what insurance would pay for the same treatment. Advocation for those who wish to seek treatment while unsuried, to get charged the same as the normal insurance price instead of being 30% higher on average. I have judgment for medical bills and the Geary Community Hospital turned my request down. I was willing to make payments but since they won't I gave up going to doctors or hospitals. So I will wait till medicare kicks in.
  4. AuntTammie

    AuntTammie New Member

    just wanted to say that I think this is a great idea....not coming up with any suggestions rt now, but will let you know if I do
  5. pirtpain

    pirtpain New Member

    I know nothing about starting charities but I think it is a great idea. I wonder if the Fibromyalgia Network could help get you started. I subscribe to the newsletter if you need to know how to get ahold of them. I do agree that it is expensive. I spend over $ 150.00 a month on med alone not counting supplements. I go to a pain center each month too. I have insurance too. Those on long term disability and collect social security each month are eligible for Medicare. I did not know this until 14 yrs after being disabled. They cover some of the cost for medical bills but not meds. Anyway I would be happy to help in any way I could if you need west coast support.

  6. pumkinhead

    pumkinhead New Member

    Good for you. Yes i think it is a great idea. I do not know how to do it. One suggestion would be contacting large charities and ask for thier help.

  7. AuntTammie

    AuntTammie New Member

    from my own experience, the things that would be really helpful are things for those who fall thru the cracks (not young and living with family who can help, not old enough to get help that's available for seniors, not married - or married but with very unsupportive spouse), also the things that do not get covered by medicare/medicaid (whether that's bc they simply are never covered, or if its bc there are no specialists available who will accept medicare/medicaid, or even if they are covered but the copays are too high to be affordable)

    some exps of these include: Dr, chiro, massage, PT, OT, etc....supplements and meds....assistance with physically getting groceries, doing laundry, cleaning, cooking.....driving.......basically the practical stuff that has to be done, but can be almost impossible for many of us and the medical/alternative treatments

    I know for me, driving, grocery shopping, & laundry are esp hard....and I also know that the Dr I see does not take medicare or medicaid, the supps add up very fast, and I cannot afford to try chrio, PT, OT, etc.....also used to get massages and they helped (then insurance changed and no longer covered them, and then they started making me get sick for some reason - I think due to lymph drainage.....but I sure would love to try them again - I know the relief they brought for awhile was sooooo wonderful).....other things are tough, too, but if I personally had to choose one or two things for help, grocery shopping and laundry would make such a huge difference - both of those things are incredibly hard for me to do and take a ton out of me....and driving is a very close third

    ETA: I have looked and looked and looked into finding assistance with these things, too, and it just does not exist (at least not where I live if you are not older or developmentally disabled)[This Message was Edited on 01/20/2010]
  8. confetti11

    confetti11 New Member

    Thanks for your responses!

    quanked, The paperwork to fill out to achieve the status certainly wasn’t fun! But I asked a friend to help me muddle through it and we made it…somehow! Right now, we have the minimum number of board members and they are made up of colleagues and peers. No medical people yet. But I’m interested in that as I can grow the awareness of what I’m attempting to do. It’s also interesting that you mentioned having an advocate…I am VERY interested in this aspect of getting well. That’s actually part of the strategy I mentioned I would like to help people implement. I used this strategy to get well. And it involved keeping track of tons of minutia. Thanks so much for your feedback. The organization in new…and in its forming stage still but I am along your lines of thinking as far as growing a group of us to band together to fight for each other (since it seems we're mostly left to fend for ourselves)…and as those of us get “well” (well enough to get back to a “normal” life)…then we can, say, partner with another to help them get back to a place of that level of wellness. I’m very passionate about this aspect.

    AuntTammie, I soooo hear you! I think we may be a similar age (I’m almost 40) and I have also looked and looked for assistance. At my sickest, my Mom could still get around and, at times, did 99% of my errands for me. She’s been sick for the last year and, increasingly, I’m back to doing almost everything myself. But, if things went south again, I don’t know who would run errands for me…I’d have to beg my friends I guess, until I tired them all out. So…I hear you. These types of stories are EXACTLY the ones I want to address. If there's a way we can communicate personally, let me know because these are the stories I'm talking about. I really want to try to implement a program that helps people get back to a functioning level. I think with the right form of intervention (and by right, I mean tailored to an individual’s needs)…a lot of people can get better. This is my belief…and has been true for me…but I know not everyone agrees with me on this. BUT, I have intervened with a lot of alternative treatments (most everything has gone on credit I am now facing paying back.) And when I’ve looked for somewhere to go for help (as I watched the debt pile up)…there has been NOWHERE to turn. I’ve noticed a lot of people who aren’t sick think that there MUST be somewhere you can go for financial assistance…yeah there is…it’s called Visa, Mastercard & Discover! That’s it buddy! I so want to change that reality from the ground up. I’ve called my foundation Unify First for that very reason…I think that first, we have to come together and help each other. Maybe the lobbying and research can come after that. But for now, the urgency only seems to be understood among those suffering...and perhaps a few select loved ones who observe and get it.

    goodguess25, thanks for your input as well. I was uninsured for a long time (finally got an individual policy by some miracle) but don’t claim anything anyway. They won’t pay for any of the “alternative” stuff I do…the stuff that actually worked.

    pirtpain, Thanks for your willingness to help support his effort! Your story is exactly the kind I’m talking about…that I want this foundation to help. Please keep in touch with me…would love to have the support on the coasts (I’m in the Midwest…Indiana.)

    pumkinhead, Thanks for the input…I am in the process of learning how to write grants. I think there could be a lot of support from other foundations to help fund this initiative. I guess I will find out!

    aussiewoman, I hear your input about research. I’m not opposed to having the foundation grow to support his effort as well. I think there’s room for both. My initial interest is in helping people have a real place to turn for help...and to unify each other in that effort. Research certainly has its place…and there are people who are improving and returning to “normal” lives…so some evidence is already there of things that work. Unfortunately…I’ve found that it takes significant financial resources to get well. Usually. Again, my experience. For treatments not covered by insurance. I’m interested in using what I’ve seen work to help people ready to make necessary changes in their lives to improve their health.
  9. AuntTammie

    AuntTammie New Member

    First of all, I want to say again that I think this is a truly wonderful idea, and I am amazed that you have managed to find the energy to get this far with it. That's truly impressive. I like the name, too. : )

    Yes, we are about the same age - I turned 38 a week ago. We also both live in the Midwest - I'm about an hr away from Chicago. And, I completely understand what you wrote about credit cards. I turned to those rt after getting sick, and found that was not a good move. Of course, at the time, I had no idea that this would turn out to be a long term illness, so I thought I'd be able to pay them back with no problem. Fortunately, I am not in credit card debt anymore....still owe on school loans, but those have been deferred indefinitely.

    I am very blessed that my parents have come to understand how sick I am. (They did not get it at all for the first few years.) If they lived closer, had more money themselves, and if my mom were in better health, they would be helping me a lot more. As it is, they have certainly helped a lot, but for the previously mentioned reasons, I am mostly on my own at this point.....esp when it comes to the practical stuff I mentioned before, like grocery shopping, laundry, etc. Sorry if I am repeating myself.....too tired to go back and read what I wrote before, so I am just going on memory and on what you wrote in response.

    As to communicating personally, I would certainly be happy to do that, but I am rather reluctant to post that kind of info on this site (not bc of the people who come here regularly, but bc I don't know who else might be reading). Of course, I really don't have anything to hide. I am really a pretty open person, but I have just heard too many warnings about being careful of what you put online. Are you on facebook at all? Since that has privacy settings that might be a way to talk further.
  10. confetti11

    confetti11 New Member

    I don't know what that is but it's obviously something you see as a bad thing. I am not misleading and I am not with the Liberty Foundation.

    As I stated, my charity has the 501(c)(3) status. And it intends to do everything I stated, as a gift.

    I'm too new at the non-profit procedure to know where but I'm sure you can verify its validity. It's called the Unify First Foundation.

    I've also been a member of this board for a long time, even though I don't post much you can read some of my older posts to see how sick I was.

    AuntTammie...I made a page for the foundation on facebook but haven't done anything with it yet...do you think you could find me that way?
    [This Message was Edited on 02/03/2010]
  11. Don'tLook

    Don'tLook New Member

    According to your state's public record filings your Foundation was started 4/13/09.

    However, it lists a P.O. Box as the address of record.

    I also cannot find the Registered Agent

    "Registered Agent
    This is the person or entity listed for service of process purposes. This must contain an Indiana street address. A PO Box is not acceptable. If the field is blank, it is likely that the entity's agent resigned and has not been replaced."

    My idea: Perhaps you should check your paperwork Confetti.

    [This Message was Edited on 02/03/2010]
  12. confetti11

    confetti11 New Member

    Thanks for the heads up. I said I was new to this. I checked and you can find the foundation on the IRS website under the charities tab.
    [This Message was Edited on 02/03/2010]
  13. AuntTammie

    AuntTammie New Member

    gap - I think we all appreciate that you are trying to look out for us....seriously, it is nice to know that you have our backs, so to speak : ) I have seen enough previous posts by confetti before, though, to know that this is not a brand new poster coming on here just to suck people in...... and even so I am cautious enough to know not to give out identifying info without vetting things thoroughly first (& there is some info that I will not give out, no matter what, like SS#, checking acct #, etc)....not to mention that I will not take out any loans whatsoever at this point in my life (even thru a bank) bc I simply do not have any way to pay them back (nor would a bank give me a loan bc I have no collateral....most expensive thing I own is my 13 yr old Sunfire)....anyway, anyone out to dupe me out of money would soon find that there is nothing there to take

    confetti - I think it's good that we have people on this board who are cautious and want to protect others (like gap) and I think it's good that there are people who genuinely seem to want to help (like I believe that you do)......hopefully you can understand where gap is coming from and at the same time, hopefully your charity will work out and those of us who are concerned about it will see that you are coming from a true desire to help.....as to facebook, I will try to look for you on there soon - have to get off the computer for now
  14. SpecialK82

    SpecialK82 New Member

    Bless you confetti for starting this charity and for your desire to help. I would love to give you some ideas but am a bit brained fogged at the moment, just wanted to let you know that I am touched by your caring spirit and wish you much success :)
  15. AuntTammie

    AuntTammie New Member

    Confetti, I tried to find you on facebook and nothing came up......is it under unify first or under somethign else to do with CFS? I really do think this is a wonderful idea, and in addition to using FB as a vehicle to talk further, I would be more than happy to put a link to your site on my fb page if I can find it

    I hope that what I wrote re gap's deleted post didn't get taken the wrong way.....I just understand that gap is cautious and I appreciate that....however, like I said, I hope that what I wrote re that didn't come out the wrong way
  16. luckyman

    luckyman New Member

    It sounds like your health has improved considerably. I had my first real symptoms when I was 18. I worked full time for about 25+ years with each year becoming more difficult, until I had to retire. I am now 56, so I guess I've had this DD for 38 years. Every year I get a little worse, just like most on this board.

    My point is the charity idea would never come into my mind if I were to make such a dramatic improvement as you have. My first instinct would be to help everyone I could by telling them exactly what changed my life. I would tirelessly chonicle the treatments that were successful and be on every website trying to spread the word and make contacts with reseachers and medical facilities to document and prove or disprove the therapies that I felt were effective.

    Explain to me how this charity would be more helpful to someone like myself, compared to an effective treatment. Sorry, but I really don't understand. What do you think helped turn your life around? If you have some insight that helps people get well, or greatly improve their health, I think you'd have an army of energetic employed people that would be willing to donate their time and money to help those that could not afford treatment.
  17. confetti11

    confetti11 New Member

    Thanks for all the well-wishes in starting the charity. I envision something that starts small but adapts and grows according to the needs we all-too-well know we need. And I envision this driven by those suffering from these types of conditions…and those loved ones and/or doctors, etc. who have compassion for us because they’ve watched us suffer tremendously. In other words, as people get better, they help others get better…either by coaching others or raise money to fund others, etc. The reason I feel passionately about this is because I do feel like we are left to fend for ourselves…to just endlessly suffer unless we figure out on our own how to get out, and how to afford getting out. Like I’ve mentioned, money seems to be a big factor for most of us…in getting better and just surviving. Without having the ability to work normally, it doesn’t take long to be in a financially devastating situation with a condition that takes, typically, significant money for treatments to get better. At least, this has been my experience.

    There weren’t necessarily one or two things that improved my health. It’s been a decade-long process. I focused mostly on my digestive system, adrenals and detoxification...but there were countless little things I did as well. These three components though have been key and I’ve been very attentive to each part. I eat really healthy (and try to also live a really healthy life in general), for the most part, and prepare mostly all my own meals at home. I think this is key. I feel one thing that helped me most is having a routine or process that kept track of everything, and being able to tell my doctor what was working or what wasn’t working. My body is typically very sensitive to treatments and some of the answers were in the subtlety of how my body reacted to interventions I was trying. I also researched, researched, researched…like a lot of people on this board. I was a fighter too, like a lot of people here. I wasn’t going to be told that I couldn’t get better from something no one could really clearly define.

    I also had one of the CFS expert doctors (in my opinion) on my team, Dr. Guyer. I’ve been seeing him for most of the last 10 years.

    I am currently working on the idea of sponsoring as many people as the foundation can for at least a year to follow a similar strategy I used to help me get better, and work along side a doctor like Guyer (he seems open to this idea.) My idea is to sponsor an individual for a year with related medical expenses covered. I envision setting up a whole program involving having the individuals support each other and have a mentor, etc. The idea is even being kicked around to make this its own research project.

    Luckyman, I hope the above explained how this charity hopes to fund effective treatments, as you mentioned. But I envision it to be more than just giving out money but rather helping people develop a strategy to getting better and funding that. You asked what helped turn my life around and I mentioned several of the key things above. I also think it helps to have an open mind…as in being open to different kinds of treatments that may be considered alternative. But, that being said, I also think one of the most important things to do is follow basic human nature to how the body works, i.e., feeding it proper food. And not just some of the time when it feels comfortable but 99% of the time, especially when someone is having severe symptoms.

    Aussiewoman, I couldn’t agree with you more about your “falling through the cracks” comment and that is exactly why I wanted to do something. I do see eventually making this big enough to help people pay for housing and necessities in some capacity.

    AuntTammie, Thanks for your comments. Would love to connect with you somehow. I typed in Unify First Foundation on Facebook and found the page. Did you type that in? One of my friends found it that way and made herself a fan. Hope we can talk soon.
  18. AuntTammie

    AuntTammie New Member

    found you - yay! and I became a fan....excuse the fact that my pic shows me running (it is a pre-CFS pic, and though I can't run anymore, I am still at heart a runner....and am not willing to give up on the hope that some day I will be able to do so again....may eventually change the pic, but for now it makes me happy....but does require some explanation when CFS friends see it for the first time)
  19. AuntTammie

    AuntTammie New Member

    ok I have posted twice that I found you on FB....post disappeared, so I rewrote it, then it was there twice, so I erased one, and now I don't see either.....grrrrr

    anyway, I did find you on FB and became a fan.....my pic shows me running in pre-CFS days....though I can't do that anymore, I still hold onto the hope that one day I will be able to again, and even if I can't, I am still a runner at heart....so, the pic makes me happy, however, it can seem strange to CFS friends, so that's why I'm giving the explanation

    as to FB, I am not on there real often, but I do try to check it at least once a week