Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Has anyone appealed to celebrities/philanthropists to help us?

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

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    I knew from news reports that Mr Cook is a gay man. In this case I strongly think that we would best respect and protect his privacy.
    I get the feeling you'll be the most surprised if you get a response. :lol:

    The wall street journal info was interesting. But I still think the letter is fine as it stands.
     
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  2. redviper

    redviper Senior Member

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    Here is the final version of the letter that has just been e-mailed to Tim Cook, the CEO of Apple. Once again, thank you to all those who have contributed by providing feedback, input or strategic advice, especially @Snowdrop. This letter wouldn't have been possible without everyone's contributions. I would like to dedicate this letter to the memory of Vanessa Li (vli), your advocacy and accomplishments serve as an inspiration to myself and many others. If I can achieve 20% of the good that you did for the ME community, I'll be satisfied. Your presence is truly missed, RIP sister.

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    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 absolutely critical to highlight the struggle of ME patients and how partnering with your charitable organizations would directly save the lives of tens of thousands of chronically ill people.

    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, within four weeks I was bedridden suffering from extreme pain 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 that 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 scientific 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 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 (ME). In addition to a variety of other ongoing ME studies that desperately require funding, the recent breakthrough by the team of Columbia University scientists could potentially lead to a treatment option for ME patients within the next few years. However, in order for such a breakthrough to be achieved, pioneers that worked on this project like Dr. Ian Lipkin and Dr. Mady Hornig desperately require additional funding to achieve their objectives. For reference purposes, I've included links to the recently published articles from Dr. Lipkin and Dr. Hornig.

    1) http://advances.sciencemag.org/content/1/1/e1400121

    2) http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201529a.html

    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 during 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 in. 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.

    My name and contact information
     
    Last edited: Apr 8, 2015
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  3. redviper

    redviper Senior Member

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    If this letter generates any response at all, I will be sure to post the response here immediately so we can collaborate and figure out the best approach moving forward.
     
    Last edited: Apr 8, 2015
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  4. LivingwithFibro

    LivingwithFibro Lily

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    Alberta Watson passed away :(
     
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  5. geraldt52

    geraldt52 Senior Member

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    Thanks, redviper, for all the effort you put into this. Fingers crossed. Maybe Vanessa can whisper something in his ear for us...
     
  6. Debbie23

    Debbie23 Senior Member

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    Nice work, Red Viper. :)
     
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  7. redviper

    redviper Senior Member

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    Thanks everyone :) I sincerely appreciate it. Let's just hope it resonates with Mr. Cook or whomever screens his e-mails.
     
  8. Valentijn

    Valentijn Senior Member

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    Damn. It looks like it was cancer.

    She was a forum member, though not very active.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    I checked. According to one news source the cancer was lymphoma.
     
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  10. Tuha

    Tuha Senior Member

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    I didnt go through all this thread but what about using this letter to contact more philanthropists. I mean just to try to find as many philanthropist´s contacts as possible and just send the letter to them.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @Tuha

    Did you have anyone in particular in mind?
     
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  12. redviper

    redviper Senior Member

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    I would also be opening to producing a basic template that we could use to contact philanthropists if people want, or tailoring letters to one or two other philanthropists that are high-value targets. With the letter above, there are a couple of things in there that are tailored for Mr. Cook and might be worth removing before sending the letter to others.
     
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  13. shahida

    shahida Senior Member

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    might it also be an idea to include a film /DVD on the devestation of ME , can't think of a name but there are a few out there- because a film can be so more emotionally engaging?
     
    Last edited: Apr 9, 2015
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  14. Tuha

    Tuha Senior Member

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  15. redviper

    redviper Senior Member

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    that's valuable information Tuha, appreciate the resources. Perhaps we could come up with a standard template that could be blasted out to most of the top 50 donors, and maybe pick 1 or 2 that we should target with tailored letters. Perhaps someone who has struggled with a chronic medical condition, or has a family member suffering from CFS/ME or a similar disease. I'm sure certain donors have "pet causes" too, so perhaps it would make more sense to focus on someone who has contributed to disease research before. All of this stuff can likely be gleamed from open source resources. It's just a matter of doing the research and identifying these individuals.
     
    Last edited: Apr 9, 2015
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    Oprah might have soft spot for the medically marginalised and abused.

    I have no idea how to contact her though. Where Tim Cook seems very accessible my (less than reliable) senses tell me Ms Winfrey is probably sheltered by many layers of worker drones.
     
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  17. redviper

    redviper Senior Member

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    Thanks @Snowdrop, I will look into Oprah once I start my research. If worse comes to worse, we could always select the most appropriate of her charitable organizations and attempt to approach that way.
     
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  18. Lucy33

    Lucy33

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    I would like to respond to something - the comment that ME is a disease of industrial nations is untrue and if i may say, rather narrow minded. It is not. It is found in EVERY country in which people properly look for it. It has been found at the same rate (slightly higher actually ) in Africa and Brasil. It is a shame that i have read this over and over again on PR- people on PR are likely to be from such industrialised countries due to its language and cultural bias and accessibility to internet facilities and welfare etc. So i'd suggest changing to ALL nations globally.
    America is not the centre of the universe.
    Also have you considered attaching a dvd film showing the suffering of ME/CFS and i think someone else on here suggested this? I think it's a good idea- in my local area we didnt get much response until we showed some potential benefactors a film (thinnk it was scandanavian but cant remember the name) which spoke to the issue on a whole other, more emotionally engaging level.
     
    Last edited: Apr 10, 2015
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  19. redviper

    redviper Senior Member

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    You have to love when people personally attack those who go out of their way to put together advocacy projects for the ME community just because they have a slight disagreement over phrasing, lol. The post is even more ludicrous because Brazil is an industrialized nation, and there are industrialized nations in Africa.

    As for those proposing sending DVD's/Videos along with the letters, that is not an approach that I support for a few different reasons. If we are lucky, a few of the letters that are sent to philanthropists will make it directly into their hands, but most will have people screen their mail. Either way, these high level executives and powerful people are very unlikely to sit down and watch a DVD based off an opening letter. This is a strategy that could perhaps be employed if we get a response and someone shows interest, but until then, I don't think that approach is congruent with what we are attempting to accomplish.
     
    Last edited: Apr 10, 2015
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    I don't know if this would seem crass but with Alberta Watson's passing from Lymphoma perhaps an appeal to the entertainment community of which she was a part might be a place to turn to for help. Perhaps Sarah Polley (The Sweet Hereafter), or Peta Wilson (La Femme Nikita).
     

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