Phoenix Rising supports the Millions Missing global day of protest
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Has anyone appealed to celebrities/philanthropists to help us?

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

  1. taniaaust1

    taniaaust1

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    Would it mean if the bond uni group was getting donations directly for ME/CFS research that the Queensland Gov could consider that when granting funding to them and could grant them less due to that in future due to seeing then less of a need???

    Does the Alison Hunter Memorial Fundation help pay for some of the ME/CFS research at Griffith uni? or just the Queensland gov put some in? (I trying to remember who funds that research currently).
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Bond researchers have moved to griffith uni which is a bigger better funded uni attached to a hospital. From memory the funding was a mixture of govt and private funding. Not sure they would reduce govt funding if private donations came in. Sometimes the govt will match dollar for dollar with donations. Could be interesting if that happened. I would assume the govt will be putting more money into cfs research especially since the moved from bond uni which is private to griffith university Hospital which is public and also spent alot of money on expensive research equipment.

    Hopefully these are promising signs of ongoing interest by the govt??
     
  3. peggy-sue

    peggy-sue

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    There was a documentary on tv just last week with Frank Bruno being incredibly brave, talking about his bipolar.
    I know he's a bit of an exceptional person, but this does mean that some celebrity HAS finally spoken out in public about a really difficult "mental" disorder.

    I have always wondered if the politics would be something that Mark Thomas might like to get his teeth into.
     
  4. Sasha

    Sasha Fine, thank you

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  5. peggy-sue

    peggy-sue

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    I'm not sure he's done such a good job of it as Frank Bruno did. I didn't watch the whole thing - but what I saw was very painful. He showed himself when he was down. We only see Stephen Fry when he's on an upper.
    Don't get me wrong - I have a lot of respect for Stephen Fry, and I got a bit upset for him when the very public and very loudly self-opinionated psychologist Oliver James decided Mr. Fry was simply a narccissist.
     
  6. Delia

    Delia Senior Member

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    The article in Justy's thread, about the young girl who committed suicide waiting for help, is another good story.


    I also recently read that Florence Nightengale, the star nurse, the founder of the Red Cross who devoted her life to helping people in need developed a mysterious illness much like ME/CFS. I need to research this more. Another good story- just as Albert Einstein and Asperger's... Helped people understand.

    What helped for autism to come together: ( it was a mess like we are in now and families too overwhelmed like we are)

    #1 Temple Grandin started writing books and speaking at conferences

    Celebrities started having kids with autism! And so did writers, directors and people in the media...

    (new Yorker writer recently wrote article over her mysterious illness I don't have the link handy but advocates are seeing ME/CFS and writing about her and to her)

    (We could research celebrities who have fallen out if the public eye and not due to addiction etc)

    Take the shame away! It was hidden before as families were blamed for the condition just as we are told it's all in our head.

    Disparate autism advocacy groups pulled together to become a few large organizations vs many small ones and developed focus and goals

    Stories including characters with autism started coming into the media (movies abd tv)that were no longer full of bullshit, and became more accurate

    Documentaries

    (Right now a documentary called blue ribbon,I think, is being made, it's on kickstarter, they got enough money, but they have an interesting trailer on the page)

    Disagreements in the community: families had to agree to disagree in orivate and present a united front in public : a spectrum of needs/therapies wanted. No more bickering in public if possible! On what is better than the other...

    Those are off the top of my head.

    I propose getting a plan together and some research (people research vs medical right now) behind it, and make planned overtures to the right people, in a co-ordinated way. :D








     
  7. Delia

    Delia Senior Member

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    I'm new here, but this is great information.

    I've got a bit of fire lit under me after reading Justy's post today.

    As a parent of a child with autism spectrum disorder I was in the trenches and watched the autism awareness and autism advocacy transform over the last twenty years. I think autism provides the best model for improving advocacy and awareness fir us than any other condition.

    It feels very much like the lay of the ME/CFS land is where we were 20 years ago...

    If you know of any more people in the media or celebrities connected to cfs it would be great to get a list.

    I would say lets not get too down on them. They might have received the same horrible responses from family friends and coworkers and colleagues as we have. As well as the World view that puts so much shame on cfs.

    I say, let's make a plan. Screw approaching the usual suspects. You are right about them. I'm down for some people research and finding the non-usual suspects. :)
     
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  8. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    WIth the ongoing efforts to find common ground for advocacy directed at the US congress I have been thinking about a different approach. And I've been sitting on the idea simply because I'm not the one who would ultimately actually do this. For me it's a cognitive limitation otherwise I'd have done it and present it here.

    My thought is that a letter be written. I recently read that Tim Cook (CEO of Apple) plans to give away his vast fortune in his lifetime.
    I don't know what that means for a timeline of when that money is available. Even if it's not right now I though it couldn't hurt to have him be aware of PWME and our plight. Also, there is the B & M Gates Foundation and I hear Warren Buffet isn't adverse to sharing the wealth either. I think that at least part of the letter should be an emotional appeal for help from people who up to now have been neglected and marginalised. The 'male pattern baldness etc.' quote of funding or something like. How we are now where AIDS was in the 80's and so on. And the science showing that there are good avenues of research waiting to be exploited if the funds are there.

    I would suggest that if there is no response to an email sent then perhaps someone who knows someone might approach Ms. Fairchild to see if she has any connections that could get a letter to any of the above. The letter can be from anyone who is willing to put their name to the request.

    Tim Cook's email address is:
    tcook@apple.com.

    Warren Buffett is a trustee of the B & M Gates foundation and should be reached there:
    http://www.gatesfoundation.org/

    If anyone knows someone who is not too ill and who has a way with a persuasive email, please share. Now is a good time.
    There is Ellen Clayton a noted scientist with institutional backing proclaiming ME/CFS (SEID) as real.
    We've had a celebrity speak up on our behalf.
    New studies are coming out with interesting and suggestive findings that need replicating.
    In the next few years there will be another Documentary about ME/CFS (SEID)
    There has been a steady build up of interest from Dr's (including here on PR) and researchers.

    In order to get people who can help to listen it's (in my opinion) not necessary to have all the details of illness name and precise parsing of current research in order to make the request.

    Let's strike while the iron is hot.
     
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  9. redviper

    redviper Senior Member

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    Alright, I'll take a shot at writing the letter. I'm completely open to people making changes or amending the letter however they see fit, I certainly won't be offended. As far as I see it, this letter is the property of the PR community. If we do go ahead and send a letter, it would probably also be worthwhile to track down the e-mail of any charitable organizations that he has already established.

    "Dear Mr. Cook,

    I'm sure the recent public announcement that you made regarding how you will be giving away your fortune has already solicited numerous responses, some more deserving than others. However, on behalf of patients all across the world suffering from ME/CFS/SEID (ME), we feel it's necessary to highlight the plight of patients suffering with ME and how partnering with your charitable organizations would directly save the lives of thousands of chronically ill patients all across the world.

    I'm not sure if you have ever had the experience of meeting someone with severe ME, but the condition usually leaves patients housebound for years with a variety of severe neurological and physical symptoms. The onset of the disease is usually random and typically strikes with a viral illness, followed by years of endless suffering. It is worth noting that the disease can strike anyone, regardless of their age, gender, or location. For me personally, the onset of the disease struck when I was 26 and working for the federal government, and within four weeks I was bedridden and disabled. Since then, like many other sufferers, my life has become a daily struggle with unrelenting chronic pain, worsening neurological symptoms and a complete absence of any viable treatment options, You would think such a debilitating disease would receive significant funding from government, but in 2014 the National Institutes of Health (NIH) awarded $6 million in funding for ME and $14 million in funding for male pattern baldness. This is just one of the insurmountable hurdles that our community is currently facing, as a lack of diagnostic testing has allowed certain interest groups to discredit the suffering of ME patients, despite undeniable evidence to the contrary.

    It is for this reason and so many more that our community desperately requests your help. You recently mentioned that you wanted to "plan to take time to develop a systematic approach to philanthropy, rather than simply writing cheques" and we commend you on taking such a calculated approach. It is currently a critical time fo ME research, as we have just had a promising study released by a team of Scientists at Columbia University's Mailman School of Public Health that identified a unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis. In addition to a variety of other ongoing ME studies that desperately require funding, the recent breakthrough by the team of Columbia scientists could potentially lead to a treatment option for ME within the next few years. However, in order for such a breakthrough to be achieved, pioneers like Dr. Ian Lipkin and Dr. Mady Hornig desperately require additional funding to achieve these objectives.

    Mr. Cook, I'll speak frankly, this is a horrible disease that is becoming increasingly prevalent within industrialized nations, either due to environmental factors or some other undetermined factor. ME targets both young and old, robbing them of their quality of life and hope for the future, as very few patients ever return anywhere close to full capacity. Please Mr. Cook, help us fight this epidemic, before it strikes down another father, mother, son, daughter, or grandson in the prime of their life. Throughout your life you have demonstrated that you are a visionary and that you are not afraid to stand up and represent the convictions that you believe. Please bring this passion and partner with the ME community to help us eradicate this horrible disease before it takes the lives of any more innocent people.

    Thank you for taking the time to read this, I know it's sincerely appreciated by ME patients all across the world."
     
    Last edited: Apr 2, 2015
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  10. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    hi @redviper

    Thanks for responding and stepping up to write the letter.
    I hope more people view it and comment.

    From my point of view it seems pretty good. I would include some way for them to contact someone if they want further information in order to make a decision but then you probably had that in mind and simply didn't want to put it here.
    Also, I don't know quite why but I'd eliminate one word:

    I'm not sure the distinction is useful.

    I hope that you go ahead with it. I wish you 'bonne chance'.
     
    redviper likes this.
  11. redviper

    redviper Senior Member

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    Hey Snowdrop,

    Yea, I've got no problem going ahead and sending the letter with my name attached. I'll wait a couple more days before I send it though, so hopefully we can get some more feedback here and I'll incorporate any changes. I've tried proof-reading it six or seven times, but if anyone catches any basic grammar mistakes please let me know!

    You are right, the world civilized is probably a little more loaded than I intended. I just meant to subtly highlight how it is becoming increasingly prevalent in the more industrialized countries, either because of environmental factors or some other link that has yet to be uncovered.

    Do you think switching the words civilized world to industrialized nations would sound better? Or do you see another alternative that would fit better?
     
  12. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    @redviper

    I reread the letter and did not find any grammar/typo errors.

    Industrialized works fine I think. although depending on who reads this it might be challenged as I've read on some other thread a statistic for many sufferers in Nigeria.

    Also, for some reason posting on this thread does not cause the thread to show up in new posts. This may pose a problem for people finding this.
     
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  13. redviper

    redviper Senior Member

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    @Snowdrop , I know there is a lot of oil exploration in Nigeria and it's one of the more advanced countries in Africa, so although it doesn't fit the traditional criteria of industrialized countries, I think it would be pretty easy to explain if necessary. However, if people find another term more suitable, I have no problem making the switch.

    Perhaps you should post the letter in the general forum to generate more discussion? I can do it later, but I've been on here too long and need to take some time to rest. Hope all is well.
     
  14. geraldt52

    geraldt52 Senior Member

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    I read your letter, redviper, and I think it's fine just as it is. Given how hard it is for us to do these sorts of things, I wouldn't over-think it. Mr. Cook is either going to read it, or he's not...it's either going to register with him, or it won't. Best case scenario is that he knows someone or has heard of someone who's affected by ME/CFS, and it catches his attention for that reason.

    The ideal situation would be taking advantage of the "six degrees of separation" phenomenon, and someone who knows someone, who knows someone who knows Mr. Cook could get it to him that way. Otherwise, sadly, I'm sure a huge percentage of these sorts of deserving requests simply end up in the waste basket of some assistant. That's why I say I'd send it as it is, and hope it might just get noticed. If it gets noticed, there'll be plenty of time to fill in the details for someone who's interested.

    Thanks for doing it.
     
  15. Lou

    Lou Senior Member

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    @redviper

    Please look again at first paragraph----- did you mean 'lives' rather than life? Good letter, thanks for your time and efforts.
     
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  16. Debbie23

    Debbie23 Senior Member

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    I think it's very very, good. I would suggest changing the wording from 'I' to 'we' making it clear we are a collection of voices, and making it clear that this affects hundreds of thousands in the world, and a lot of children. I spent this morning writing my own version based on red vipers, but not sure if I should post it! I will if people like.

    Edited for a typo
     
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  17. redviper

    redviper Senior Member

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    @geraldt52 - Thanks for the feedback, I couldn't agree more about this disease either registering with him or not. I view it like playing the lottery, hopefully one of these times the ME community finally wins. Realistically though, I agree with your notion about six degrees of separation and think that we need a methodical approach to ensuring we get in touch with the right people. I don't think we should settle for e-mailing Mr. Cook directly, I think we need to be a little more proactive in our approach. If he's giving away his life fortune and wants to take a methodical, calculated approach to giving it away, he's likely going to start putting together a team around him (if there isn't one already in place) specifically for the purpose of figuring out the best way to spend his charitable donation. Who are these people advising him? These are also people we should be targeting for outreach, and they are likely going to be much easier to get in contact with than Mr. Cook. I suspect they will likely be people that have been involved with his previous charitable endeavours, and that's the type of information that should be fairly easy to track down through google / open source research. It's just a matter of putting in the time and effort, and it would probably require a team effort from a few people here.

    @Lou - Thanks for catching that, I can't believe I missed that after doing 6-7 separate proof-reads. During my younger (and more arrogant) days before the onset of this disease, I would only need to proof read things once or twice to feel comfortable about my writing.

    @Debbie23 - Yes, please post your letter! I think it makes sense for a lot of different reasons. For starters, it might serve our purposes better than mine and I have absolutely no problem if I'm not the author of the final letter. Even if the consensus is to just use one of the letters that we have created, others could serve as templates for future outreach programs to other charitable individuals
     
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  18. redviper

    redviper Senior Member

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    @Snowdrop - Like I mentioned in my post to Gerald, I think we should be taking a two track approach to our outreach to Mr. Cook, as I agree with you that it is critical "to strike while the iron is hot". The first would be the letter itself, which we will hopefully receive some more feedback on from other posters over the next 48-72 hours. After that we should probably just try and reach a consensus on the final letter and move on.

    Simultaneously, I think we should be researching individuals or board members that Mr. Cook is most likely to turn to for advice on how to divide his charitable donations. Who are these people? Has some sort of committee already been established? Did he have advisor's working with him on his previous charitable endeavours? These people would likely be far more easy to get in contact with and probably give us a much better chance of reaching Mr. Cook. Just food for thought.

    I also think we should give some consideration to asking if Phoenix Rising would sponsor the letter, as the optics for outreach would likely appear better coming from a reputable non-profit organization as compared to a single individual e-mailing multiple people from Mr. Cook's team.
     
    Last edited: Apr 1, 2015
  19. Debbie23

    Debbie23 Senior Member

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    Here's my attempt. I've taken Red Vipers terrific efforts and adapted it, mainly changing 'I' to 'we' as I think it's more powerful and adding detail about children etc. many thanks for the structure, I wouldn't have known where to start! :)I hope others will do the same to mine if they think it's any good, which of course it may not be. But I totally agree that The more of us contribute the better imho. I've never really written anything like this before and it's entirely possible it's rubbish. It's also even more possible that my 'facts' are mixed up and may need changes going about, this has taken it out of me and it may need a lot of correction if anyone would like to do it. My grammar etc. may also be poor, I've proofread but don't always spot things when tired.


    "Dear Mr Cook,

    We are sure the recent public announcement that you made regarding how you will be giving away your fortune has already solicited numerous responses, some more deserving than others. However, on behalf of the hundreds of thousands of patients all across the world, of all ages, economic and cultural backgrounds suffering from ME/CFS/SEID (ME, hereafter for brevity), we feel it's necessary to highlight the plight of patients suffering with ME; and how partnering with your charitable organizations would directly save the lives of so many devastatingly ill patients all across the world.

    This is a disease on the precipice of change for the better, however in order for this change to occur patients and researchers alike require funds to provide structure in order to drive research forwards moving into the future. We are asking you to be a driving force in that change, to drive forward hope for the future for a global patient group with a devastating neurological disease by taking an interest. We have the world class scientists, such as Ian Lipkin, poised for action, we have the patients willing to take part and we are beginning to understand the pathways we need to tread in order to carve a brighter future. What we lack is the finance to make it happen and to end the suffering for the hundreds thousands of men, women and children around the globe. We ask for you to help us make that happen.
    We are uncertain if you have any awareness of ME, so we beg your indulgence while we take a minute to explain how this debilitating, often lifelong, disease affects men, women and children.

    This neurological disease involves a multitude of systemic and often serious symptoms, which can affect all processes in the body, including cognition, digestion, physical function and many more. In many ways it can often be very similar to MS. Sufferers are typically left seriously disabled, often permanently. At its severest end it can kill. Such patients beforehand often spend years, and even decades, trapped without hope of recovery or sometimes even understanding, while they suffer neglect or even abuse because they have the misfortune to suffer from a neurological disease which isn't currently widely understood beyond a few specialists in the disease. Very severe ME can render patients, including children, trapped in darkened rooms, struggling to tolerate even minor stimulus such as sunlight or the lightest of noise, and reliant on being tube fed and round the clock care, sometimes for years on end. Even in its mildest form ME often renders individuals significantly restricted in terms of their quality of life and ability to function.

    The onset of the disease is usually random, at the moment unpredictable, and typically triggers following a viral illness; or some other traumatic shock to the individuals body such as surgery or an accident. This initial onset is followed for the majority of patients by years of endless suffering. It is worth noting again that the disease can strike anyone, regardless of their age, gender, or global location. There are thousands of children who suffer with this disease all over the world, it is listed in various sources as the number one cause of school absence in children, meaning this disease not only strips children of their health, but also their opportunity for educational and social development alongside their peers. While prognosis is often listed as being better for children and adolescents, many of those have to learn to significantly reduce their quality of life if they wish to recover or regain greater function as they move into adulthood; raising the question as to whether they are truly recovered at all. For adults the prognosis for recovery is significantly reduced still further, a large number of patients are left without any hope of recovery at all and are faced with the prospect of spending the rest of their lives with significant disability, pain and all other symptoms.

    Those of us who have composed this letter to send to you come from many backgrounds ourselves. From a 26 year old man who at the time of onset was working for the federal government before being stuck down and rendered bedridden within four weeks of onset. To a 28 year old woman who was initially struck with this disease aged seven and who totally collapsed aged 13, and who has needed constant nursing and care since then, with no real hope of recovery fourteen years on. There are many more voices locked in the shadows besides, there are thousands more stories to tell. Each has their own imploring tale which could be told in support. But collectively we have one voice, one desire, we are in desperate need of help to get a structure in place to fund research which, while often very hopeful of providing a cure and understanding of the disease, run into dead ends due to lack of funds. We are in desperate need of providing a long term structure to carry this hopeful progress further.

    You would think such a debilitating disease would receive significant funding from governments, but in 2014 the National Institutes of Health (NIH) awarded $6 million in funding for ME and $14 million in funding for male pattern baldness. This is a story which is repeated globally, with research ready to go but lacking the financial resources to do it, as governments rank the disease lower in priority than things such as this. This is just one of the insurmountable hurdles that our community is currently facing, as a current lack of diagnostic testing has allowed certain interest groups to discredit the suffering of ME patients, despite decades of undeniable evidence to the contrary. Much like how patients with MS used to be historically be treated before research progressed to a greater understanding.

    It is currently a critical time for ME research, as we have just had a promising study released by a team of Scientists at Columbia University's Mailman School of Public Health that identified a unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis. In addition to a variety of other ongoing ME studies that desperately require funding, the recent breakthrough by the team of Columbia scientists could potentially lead to a treatment option for ME within the next few years. However, in order for such a breakthrough to be achieved, pioneers like Dr. Ian Lipkin and Dr. Mady Hornig desperately require additional funding to achieve these objectives.

    You recently mentioned that you wanted to "plan to take time to develop a systematic approach to philanthropy, rather than simply writing cheques" and We commend you on taking such a calculated approach. It is for this reason, and so many more, that our community desperately reaches out requests your help. We ask you to be the driving force for change in this area, to help us to provide a structure for future research in order to drive forward hope of treatment, increased quality of life and even, eventually, recovery for hundred of thousands of men, women and children around the globe.
    We thank you for reading this letter, And we thank you for your time and your consideration,
    Signed, the ME/CFS/SEID community."
     
    Last edited: Apr 2, 2015
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  20. redviper

    redviper Senior Member

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    @Debbie23 - Very well written and meaningful letter. Thanks for taking the time and effort to make such a significant contribution. I don't know how we want to handle this moving forward, but we should probably give people a couple of days and then come a consensus on which letter we want to move forward with. Maybe we could send the other letter to some of the other charitable organizations highlighted by @Snowdrop. Like I said, I'm fine with however people want to handle this moving forward. I just think it's important that we strike quickly and with a well flushed out plan.
     
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