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IMPORTANT!!! Please sign this e-card to thank Edward.. Foundation for funding Genetic OMI Study

Discussion in 'Action Alerts and Advocacy' started by parvofighter, May 6, 2013.

  1. parvofighter

    parvofighter Senior Member

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    (Permission to re-post this announcement in its entirety)

    Calling all ME patients!

    Have you heard the great news (see Nielk's thread here http://forums.phoenixrising.me/inde...-to-open-medicine-institute-for-study.23066)? The Open Medicine Foundation just received a massive grant from the Edward P. Evans Foundation to study genetics in ME and CFS. This is a fully-funded, fast-tracked project that is scheduled to be completed in 9-12 months.

    This is a strategically important funding event for three reasons:
    1) New Funders: Each NEW philanthropy foundation that steps into the ME and CFS arena brings the possibility that they will tell their friends, and their friends will tell their friends. We desperately need more, bigger, and NEW funders for our diseases, so that we can get answers ASAP!

    2) Connections: With the involvement of the enormously well-connected Dr Ron Davis, a founder of the Human Genome Project, we have the potential to link with other big-time Silicon Valley philanthropists.

    3) Deserving, Credible Recipients: By funding an OMI-Merit initiative, we are seeing money channeled to some of the finest minds in ME research; and people who can cross-pollinate this research.

    Please sign this Thank-You card!
    Please join us in showing our appreciation, to the Edward P. Evans Foundation, so they really feel that their philanthropy makes a difference, and so that our cause remains uppermost in their minds. (we have cleared this with Linda Tannenbaum, Executive Director of the Open Medicine Foundation ). You can sign the card by clicking on the link here: http://groupcard.com/c/8W9nORILuaR/ol . If you want to include your country, just add a comma after your name, and then your country.

    You have until NEXT Friday, May 17 @ 11am before the card gets sent.

    Thank you!



     
    Moxie, sianrecovery, Nielk and 8 others like this.
  2. parvofighter

    parvofighter Senior Member

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    Here is a copy of the announcement from today’s e-Newsletter
    from the Open Medicine Foundation:

    Major Grants Kick off
    OMI-MERIT Research Projects
    -------------
    Answering the question: Does genetics play a role in ME/CFS?
    The Open Medicine Foundation in partnership with the Edward P. Evans Foundation has fully funded a ground-breaking grant to the Open Medicine Institute (OMI), Mountain View , CA to determine if genetics plays a role in ME/CFS. This grant will provide answers within the next 12 months.
    • Goal: Use the most advanced methods available to measure DNA sequences in a set of patients and controls, including affected families and unrelated individuals. Utilizing advanced Human Genome Project technologies, this project will undertake whole genome sequencing, gene analysis, DNA methylation studies, HLA and other regional sequencing of areas of interest in a selected group of nearly 1000 individuals.
    • Importance: Establishing or refuting a role for genetics and potential heritable risk in ME/CFS.
    • Projected length of project: 9-12 months
    Andreas M. Kogelnik, MD, PhD, of the Open Medicine Institute (OMI), will be the Principal Investigator to orchestrate a comprehensive investigation of genetic/genomic factors for ME/CFS through focused whole genome sequencing, large scale HLA sequence analysis and large scale DNA methylation analysis. Ron Davis, PhD, of the Stanford Genome Technology Center will be a key collaborator on the study.

    This is the first fully funded research project of the OMI-MERIT Initiative in which scientists and clinicians from USA , Italy , Britain , Germany , Sweden and Norway agreed upon as the priority projects to study ME/CFS. For a list of all the OMI-MERIT Initiative Signators please click here.

    The Open Medicine Foundation is tremendously thankful and sincerely grateful to the Edward P. Evans Foundation for their partnership and for granting a substantial and generous donation to study the genetics of ME/CFS. We at the Open Medicine Foundation, look forward to continuing our partnership with the Edward P. Evans Foundation and other like-minded foundations, corporations and the patient-community to move this research forward quickly.
     
    merylg and Kati like this.
  3. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Signed.
     
    parvofighter likes this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    Likewise.

    GG
     
  5. snowathlete

    snowathlete

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  6. OverTheHills

    OverTheHills

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    New Zealand
  7. Sasha

    Sasha Fine, thank you

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    Nice idea - thanks!

    Signed.:)
     
  8. Nielk

    Nielk

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    inked
     
  9. jace

    jace Off the fence

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    Squiggled my thanks. Well done, Parvo.
     
  10. sianrecovery

    sianrecovery Senior Member

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    done it xxxx
     
  11. Moxie

    Moxie

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    Is it wrong that I was tempted to choose "smell ya later" as the closing? :D

    Okay, okay, maybe not truly tempted, but it did crack me up that it was an option!
     
    alex3619 and parvofighter like this.
  12. parvofighter

    parvofighter Senior Member

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    ONE MINUTE ADVOCACY for the Open Medicine Foundation!
    Just a quick update: The online Thank You card to the Edward P. Evans Foundation for their sponsorship of groundbreaking genetic research on ~1000 patients with ME and CFS now has 91 signatures from all over the world, including: Australia,Canada, England, France, Germany, Ireland, New Zealand, Scotland, The Netherlands... and of course from all over the USA.

    In one minute, you can sign the card here: http://www.groupcard.com/c/8W9nORILuaR/ol

    If would like to email or re-post the invitation to sign (Posts #1 and 2 on this thread, or even this post), please feel free to do so. We'd especially like to get more countries represented, so when you sign your name, please add your country, so the Edward P. Evans Foundation knows how international their impact on ME and CFS research is.

    You have until Friday May 17th to sign.

    Thank you!!
     
    Sasha, Bob and OverTheHills like this.
  13. RUkiddingME

    RUkiddingME Senior Member

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    Done! Great idea! thanks!!!
     

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