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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
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Simmaron need $20k to secure $1 million for crucial NK cell study - go, go, go!

Discussion in 'Fundraising' started by Sasha, Oct 23, 2012.

  1. Sasha

    Sasha Fine, thank you

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    I want to pass on this email I got this morning from Courtney Miller. Simmaron has got all but $20k of the $225k needed for its pilot study into NK cells in ME, and if it can fund the pilot study, it automatically gets $1 million for the big study.

    Not often we get the chance to multiply our donations by FIFTY!!! Although Courtney talks in her email about your donation effectively getting multiplied by five, that was when there was £225k to raise - now we're down to the last $20k, it's not five, it's fifty.

    I think this is a very exciting study - NK cells going weird is a key feature of ME but understudied.

    As Alex says in his response below, 'Its the best study we have going aside from Rituximab. It could lead to not only a diagnostic biomarker, but a treatment biomarker that could guide doctors on how various treatment protocols are working.'

    So, I've given them a fair whack of my cash. This is unusual for me because I'm fairly tightfisted but this is an important study and FIFTY...

    Even if you can give only a few quid/bucks/euros, it will all help. Just giving $10 will be like giving $500!


    October 20, 2012
    Dear Friends,
    My husband Robert has been ill with Chronic Fatigue Syndrome, or ME/CFS, for more than 20 years.
    Last year, President Obama made me a promise at a town hall meeting in Reno, Nevada, to go back to the National Institutes of Health and see if they could do better than fund just $6 million of scientific research into Chronic Fatigue Syndrome.
    [​IMG]
    This month, President Obama fulfilled his promise and became the first President to urge the Secretary of Health and the Director of the National Institutes of Health to “elevate CFS on the list of
    [​IMG]

    priorities” at our federal health agencies.
    We are celebrating this milestone. Still, Bob and I know we have a long way to go before there are multiple clinical trials for treatments, a test for diagnosis, and doctors in every city who know the gold standard of care.
    So, why did I ask the President about funding for scientific research? Science holds the promise of treatments and more good days than bad. Science can tear down stigma and isolation which haunt patients. Science can tell us what makes us or our loved ones so sick.
    Science is progress, and we need much, much more of it.
    And we still need to fund it ourselves. That’s why I am asking you to join us in contributing to Simmaron Research Foundation. Simmaron Research needs our support to fund a groundbreaking study in collaboration with researchers in Australia and Wisconsin to answer why Natural Killer Cells don’t work correctly in ME/CFS patients. Low Natural Killer Cell function is one of the hallmark findings in this illness, yet very little research focuses on what goes wrong in those cells.
    The Australian pilot study is already backed by a commitment of follow-on funding from an Australian foundation, meaning that Simmaron’s funds will multiply by 5, turning $225,000 into more than $1 million of strategic research in our disease. Simmaron is closing in on fully funding this pilot study, needing just $20,000 more. What an amazing opportunity to turn every $10 contribution into $50 strategically aimed at researching the cells that are broken in patients.
    Magnifying our research funding is paramount. Studying biomarkers is pivotal. The Australian team, led by Dr. Sonya Marshall-Gradisnik at Griffith University, published a study in May 2012 entitled “Cytotoxic lymphocyte microRNAs as prospective biomarkers for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” (http://www.ncbi.nlm.nih.gov/pubmed/22572093) Furthering their research could change the pace of progress.
    Please join Bob and me in completing the Australian pilot study and unlocking $1 million in sophisticated research for ME/CFS.
    With hope and thankfulness,
    Courtney and Bob
    Courtney and Bob Miller, Reno, NV
    Simmaron Research, 948 Incline Way, Incline Village, NV 89451
    775-298-0030
    SpecialK82 and Enid like this.
  2. Sasha

    Sasha Fine, thank you

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    I always find it a puzzler how much to give to any particular appeal. This one was easy, for once: I recently treated myself to something that, by my standards, was expensive, and I'm still getting the benefits. I decided that if I was willing to spend money on that, I should spend the same amount on this important piece of research, so I did.

    I've seen other strategies, such as calculating what you spend on your treatment every year and donating 1% of that to research.

    We all have different circumstances and I realise I'm very lucky to have some cash to spare at the moment. But even if you can only spare a small amount, those small amounts add up!
  3. maryb

    maryb iherb code TAK122

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    Its true Sasha its hard deciding what to do with any bits of cash you have, when you are working its so easy to be generous all the time. In the UK I try to support the British Legion, The Christie Hospital and various ME stuff during the year, this is something I will find some bucks for though, the USA is leap years ahead of the UK, doctors there actually saying it is a serious illness and many many treating it as such. They get shot down here if they try that.
    We can only dream of our Prime Minister asking/demanding the Briish Research Council to get their fingers out and put more money into research aimed at finding the cause of ME. Oh and telling NICE to shove the CBT and GET wherever.........
    Sasha likes this.
  4. alex3619

    alex3619 Senior Member

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    Hi maryb, I can tell them where to shove CBT/GET, but my comment might get moderated. ;)

    The PHANU group is now operating in one of my two universities, though a different campus from where I was taught. I however visited that campus. It is nestled in an area of heavy bush. I am hoping I may be able to join a new study as a subject, but my co-morbities may exclude me.

    Its the best study we have going aside from Rituximab. It could lead to not only a diagnostic biomarker, but a treatment biomarker that could guide doctors on how various treatment protocols are working.

    Bye, Alex
  5. Enid

    Enid Senior Member

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    Thanks for drawing attention to this vital area of research Sasha - small donation on it's way, .......go alex it's now all happening in Aus. :balloons:
  6. Sasha

    Sasha Fine, thank you

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    Hi alex - I hope you don't mind but that's such a good comment I've cut and pasted it into my original post! :)
    alex3619 likes this.
  7. maryb

    maryb iherb code TAK122

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    Alex now that we're behind it tell them we insist that you are part of the study..or else
  8. Nielk

    Nielk

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    I just made my donation. I just have a suggestion. It would be great if Cort could send out e-mails to all members
    to give them an opportunity to participate. Not everyone will find this thread and read it.
    Sasha likes this.
  9. Sasha

    Sasha Fine, thank you

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    Hi Nielk - that's great that you donated. I hope the cash is rolling in!

    I've PM'ed Cort to ask if he can make this call for funding more prominent - I think it's very important and a great opportunity.
    Nielk likes this.
  10. SpecialK82

    SpecialK82 Senior Member

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    I've sent in my donation as well - let's hope that we can pull together the $20K needed :)
    Nielk and Sasha like this.
  11. John Mac

    John Mac

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    Sent in a donation - let's keep it going
    Nielk and Sasha like this.
  12. Sasha

    Sasha Fine, thank you

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    Bumping...

    Wish they had one of those funding thermometer things or something so we could see how it's going day to day! :)

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