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Has anyone appealed to celebrities/philanthropists to help us?

Discussion in 'Advocacy Projects' started by knackers323, Aug 23, 2013.

  1. knackers323

    knackers323 Senior Member

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    Have we tried asking people like Richard Branson, Dick Smith, Bill Gates or other philanthropic organisations for help and/or funding? If we could get someone like Oprah or someone influential to mention our cause I'm sure it would help a lot.

    For the Aussie s I thought of Clive Palmer. As he is looking to run for government he could get himself lots of votes from CFSers, their friends and family's, by doing something to help us.
  2. taniaaust1

    taniaaust1 Senior Member

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    You can only try, it has been tried many times contacting celebraties. Many of them already have their own cause they like to focus on or are asked to support other causes. (I know others in the past, quite a few others have mentioned about wanting or trying to contact Bill Gates).

    I dont know if anyone has tried to contact any of the others you mentioned. People running for gov probably always very good to contact those.

    If ME/CFS could get a successful appeal going (just like other orgs do eg the blind society or whatever), maybe then we would have a good chance of them getting some celebs interested and backing us. While this illness remains unknown, its hard to get celebreties to back us.

    Maybe there are some good ME/CFS orgs out there who would take people on board to set up some kind of appeal? eg Alison Hunter Foundation?. We arent doing what the heart foundtion, diabetes foundation, MS society etc does and I think that is truely needed and would help solve the problem with this illness not being well known if we followed suit of other well known orgs. Then we would have celebrities supporting us and helping with funding etc.
    Sasha and WillowJ like this.
  3. WillowJ

    WillowJ Senior Member

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    what are they doing that we could be doing?
    maryb likes this.
  4. maryb

    maryb iherb code TAK122

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    I think we need a patient organisation - lots of clever people on here on could organise this. I couldn't.......but I could be a foot soldier:)
    We only need one person like richard branson, this would give us so much positive media coverage - it would be stuff the SMC and SW.
  5. ukxmrv

    ukxmrv Senior Member

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    Yup, I've tried and I know plenty of other people who have tried as well. Oprah must be sick of the requests by PWME and CFS.

    The UK problem is that AFME actively pinpoints people. Look at what happened with David Cameron. One of his constituents goes to see him, he promises to help and then AFME gets a reception at 10 Downing St.
  6. taniaaust1

    taniaaust1 Senior Member

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    They put money into fundraising and not just into research, by doing that they get money for research. I get letter in the mail asking for donations, I have NEVER got a letter in my mail asking for a donation to ME/CFS research. They do appeals throu papers and TV asking for donations, where is our appeal? Here in Australia, Ive NEVER seen an ad on ME/CFS. The blind society collects donations throu phone. Most of these groups their orgs sell things too to help raise money for their research be it badges, pens or whatever. Promotional material stuff of their orgs to help raisey money for their research.

    Not only that, they all support EACH OTHER too eg I make a donation to one and this is turn causes the others to be then sending out promotional material to me asking for a donation. There must be some charity list or something in which they get the names of people who give donations from (why arent we on such a list?).

    Here is a sample of a couple of the letters I got from various of the other orgs in my mail asking for donation, this is the kind of thing I mean. This is what we arent doing. [​IMG]

    Anyway, this is where we are going wrong, our orgs arent activity fundraising for research etc,(maybe this is something more of us should be asking our orgs about and offering to volunteer to help or form fundraising groups to work with the orgs). The other orgs dont just get donations from sending those mail outs to people (unusually it contains a sad story and photo of a child affected by the illness etc so something to pull at peoples heart strings ) but they also get their illnesses more known about too, something we are needing just as much as the money.

    Its our big orgs themselves which could be more likely to possibly get some famous person to help support our cause if they approached one well to be a spokesperson for us... otherwise we are just another individual, begging for help (I tried writing to a few famous people in the past but didnt even get a response back).
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  7. taniaaust1

    taniaaust1 Senior Member

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    We have our own horror stories which could be publically told and they are not being told, What would be more successful.. compare what we are trying to do with this, someone who isnt in a wildlife org contacting a celebracy and asking for them to donate money for wildlife conservation or someone getting a letter like below from a proper org themselves asking? (Im not saying this to put off people contacting celebraties but maybe if we worked with this kind of thing in some way with our orgs, the GOOD ones, maybe we would be more successful?)

    Here's another one [​IMG]
  8. WillowJ

    WillowJ Senior Member

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    This is great, tania, thank you.

    The orgs are doing a little of this, and also starting to work together (at least some of the US ones are; the Aus ones seem pretty connected to me but I think they suffer from a lack of personnel/ no one seems healthy enough to do anything; we write them and they don't write back... Canada is similar... UK is a can of worms... Europe has an official collaboration... I don't know of any direct contact with other areas) but I think lots more can be done.

    I'm certain there are several of the orgs who would welcome suggestions or a volunteer; some of them have training available as well.

    there is actually an international fundraising group:
    http://forums.phoenixrising.me/inde...ne-contests-fundraising-info-in-post-1.11803/

    mostly the focus has been on contests so far, but there seems to be a lack of big contests this year, and I think there are some people there who would be interested in this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Yeah but that fundraising group just seems to be for the competitions.

    If a small group of ME people got together and did a fundraising letter which would be suitable to be used in any country (just like the ones above.. maybe the story of Alison Hunter? or use some bedridden child/teen with severe ME to use for publicity, Im sure there is a parent out there who would consent in their child being used in that way and could provide good photos.. that really would get attention as most adults do have a child!! and it shows that ANYONE can get this illness so helps break the sterotypes). A main letter could be written out which would be suitable to be used in any country for support of ME/CFS research.

    Maybe then contact all our orgs and give them a copy of it asking if they could use it to request more money for ME/CFS research. I wonder if any would follow up on it?
    Delia likes this.
  10. knackers323

    knackers323 Senior Member

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    Yes, great idea. I think we all as whole have got to try something as it just feels like we are going nowhere. I also receive letters and things for other charities and causes all the time and it always makes me think why are we not doing that? Then I realise the answer is probably because we are all flat out just keeping our heads above water, let alone trying to take on anything extra.
    Delia, peggy-sue and taniaaust1 like this.
  11. WillowJ

    WillowJ Senior Member

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    The fundraising group is actually doing all sorts of fundraising, whatever anyone can think of. For example, the MEandYou campaign posted there and people shared the information.

    Also here is a current one: http://t.co/wMIERI96P6 .

    I would like to see, for example, banks offering for people to make donations and then hang up little construction paper signs with their names, as they do for cancer and other diseases, but I am not sure people would actually donate because they think this is not a real or serious disease, so they would rather give to cancer or children or animals.
    Delia and taniaaust1 like this.
  12. taniaaust1

    taniaaust1 Senior Member

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    Yeah unfortunately I dont think people would donate much either due to that hence why I think any fundraising we do needs to also involve education.
    WillowJ likes this.
  13. dannybex

    dannybex Senior Member

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    Oprah and her cohorts (Dr. Oz, Dr. Phil, etc) would never be interested in anything that doesn't have some sort of relatively easy cure or treatments as their programs need to show 'success' by the end of the show.

    It is indeed frustrating and disheartening that celebrities and/or those connected with celebs who have indeed been diagnosed with CFS or ME/CFS haven't done more when it comes to raising funds -- people like Julie Andrews (whose husband Blake Edwards supposedly had CFS for the last 15 years of his life, and when did Andrews ever talk about her husband, let alone his illness) and Susan Harris, the creator of the Golden Girls (and several other shows).

    Sure, Harris wrote an episode (where Bea Arthur was diagnosed with CFS...only problem she was recovered by the following week!), and has spoken about it in interviews, but with all her connections (and residuals over the past 35 years), hasn't gotten her friends involved in raising the millions that could easily be raised.

    I've said it before, but just like with Michael J. Fox and Parkinson's, I'm afraid that ME/CFS will never get the attention and funding it needs until a beloved celebrity comes forward with their story of severe disability...


    Edit: And Bill Gates seems to be interested mainly in vaccines...which many here already have issues with.
    Delia, Valentijn and taniaaust1 like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Yeah Australian orgs are connected nowdays but everyone is sick. I dont know if there is any healthies at all about in those (everyone Ive ever met from the Aussie orgs is ill, the orgs are just hanging on there and I think some of the Aussie states have near dead orgs or dont even really have one thou may have a name), so without more volunteers I dont think much progress will be moving forward. No doubt other groups are the same worldwide and needing people to do the work for them for things like this, throu them, we could be doing a lot more.

    Hence I think as individuals if we came up with ideas and offered our orgs more actual help, maybe that would more so help move things. People often want to know "what can I do?" and are trying to do things to help but dont think of trying to work with the orgs. We really need to group up better with them cause they are are very weak link which we need to strengthen the good orgs..

    Thou UK is as you say, a can of worms, it does have a few good groups who who knows, could accept help in this area.
    WillowJ and Sasha like this.
  15. taniaaust1

    taniaaust1 Senior Member

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    Its probably due to the stigma attached to this illness that they dont want to come forward and say "my child has this" or my husband has.. or even if themselves have. The more people are aware of the illness, the more aware of the stigma around it and all the issues around it, they may be.

    How many actors etc would like to tell people they have bipolar? Similar stigma thou not the same around ME/CFS thou as we all know it isnt a mental health illness the stigma can be the same. They are far likely to take about something like having parkinsons disease.
    Delia likes this.
  16. dannybex

    dannybex Senior Member

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    Yes, and when it comes to acting, at least in movies...actors usually have to wait around in their trailers until the scene has been lined up, lighting all set, so if the do indeed have milder or moderate cases of ME/CFS, they can rest/sleep until a few minutes before their scene, then shoot it, and go back to lie down and rest. In other words, they can hide their illness longer than others, and since it can't be easily explained, probably fear that they'll be laughed out of the business if they try to explain it. Look at all the ridicule actor Jeremy Piven got for claiming he had mercury poisoning...
    Valentijn and taniaaust1 like this.
  17. Tuha

    Tuha Senior Member

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    I also think that the biggest problem is that our organisations has only sick volunteers. What can we achieve if you have to wait often some days just to get an answer for your email?
    You mentioned here some celebrities and some problems why we are not successfull but I think even in our community we have big potential. I think the easiest way to persuade someone to donate for a research is if you know this person or if you know someone who works in a fondation. I am sure that almost everyone from us know a rich person who could donate. Maybe it wouldnt be immediately millions but if many people would join such an effort and they would ask their rich friends/ family members to donate - I think we could have a nice pot of money. And who knows maybe someone knows also a really rich person.... Good example is that Hutchinson family who plans to donate 10 million for ME research if I remember correctly.
  18. Valentijn

    Valentijn Activity Level: 3

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    Actress Alberta Watson has it, and used to be somewhat active on the forum here - or someone claiming to be her was! :cautious: :D
    http://forums.phoenixrising.me/inde...famous-me-cfs-sufferers.647/page-3#post-18831
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im suprised that bond uni group which is now griffith uni who do the nk studies in cfs/me here in australia dont have a place where we can make donations(tax deductable would be great). I just think the study i was involved in had 150 people, so those and some of their familes donated money then it would amount to a tidy sum and then post a link on a few cfs forums and every so often post something on facebook for donations etc. It doesnt take long before they build a tidy some for their research into cfs/me. Maybe its worth contacting them and tell them we have people interested in donating money towards cfs/me research??
    Sasha likes this.
  20. WillowJ

    WillowJ Senior Member

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    yes, I worded that badly; sorry. There are indeed some very good groups there which deserve support.

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