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Please consider donating to OMF's study of severely ill ME/CFS Patients

Discussion in 'Active Clinical Studies' started by Gingergrrl, Feb 16, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    SpecialK82, Mij, merylg and 8 others like this.
  2. nandixon

    nandixon Senior Member

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    It's such an obvious connection that I imagine it's already been mentioned, but I wonder if Angelina Jolie might be willing to help promote this given her relationship with Laura Hillenbrand?
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @nandixon I believe this question re: Ms. Jolie helping our cause has been posed in other threads and I am afraid I do not know the answer!

    But this project really needs our help with fundraising and is the first of its kind. They will be conducting and analyzing extensive testing on the most profoundly ill bed-bound ME/CFS patients with the belief that the most severely affected among us hold the key to discovering the mechanism behind this illness.

    This is one of the best research proposals out there IMO and the scientists are motivated, incredibly smart and passionate about this cause. What they lack is the funding to move it forward and we can help with that!

    Thank you to everyone for taking the time to read this post.

    ETA: In an ideal world, this funding would be coming from the government but until that day arrives, we need to do what we can.
     
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  4. Sparrow

    Sparrow Senior Member

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    I've donated again. Thanks for mentioning.

    This seems like such a clearly beneficial approach. I'm sure the sickest among us probably have more pronounced abnormalities than patients who are easier to get to testing, etc. I'm eager for this to get underway.
     
    August59, merylg, Sasha and 4 others like this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @Sparrow Thanks for donating and I know this project is going to do amazing things once they get the funding to start.
     
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  6. oceiv

    oceiv Senior Member

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    Thank you, @Gingergrrl for giving this study on severe ME/CFS patients attention. Is there more info on this study on their site or is it just on Facebook? All I saw was the general "The End ME/CFS Project" on the site. Also, is there a way to earmark your donation for this specific study?
     
    Last edited: Feb 27, 2015
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @oceiv I believe that they are in transition re: the website for the End ME/CFS project so I want to confirm this before I post it. I will also confirm how you can earmark a donation for this specific study. I will get the information for you and post it here tomorrow.
     
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  8. oceiv

    oceiv Senior Member

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    Great. I will check then. I hope this study continues to get further attention.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @oceiv and @Sasha and to everyone else who asked me about this recently... here is the info straight from one of the heads of the project:

    No matter how they donate, there is a place for them to indicate the Severe Patient Study. On the current website, www.openmedicinefoundation.org there is a donate button top right and they can click on that and donate via credit card or Paypal.

    They can indicate it in the "Message to honoree". PayPal is set up for that and says Severe Pt Study/End ME/CFS.
    Or they can put the message in the memo of the check.

    Checks can be mailed to:
    OMF
    c/o Linda Tannenbaum
    29302 Laro Drive
    Agoura Hills, CA 91301

    Thank you to everyone who has been asking me (@Gingergrrl) and I hope this info helps. Thank you so much to anyone who donates to this wonderful upcoming research project :thumbsup::star::star:
     
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  10. oceiv

    oceiv Senior Member

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    I will be donating to this study. As a currently housebound patient, this gave me hope during a stressful week. Thanks again, @Gingergrrl and thanks to anyone who has donated or is going to donate to the severe patient study. I will try to figure out how to make a signature (I'm new) and put a link to this thread in it, until the OMF site is updated,
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @oceiv My pleasure and glad to help! Everything I posted is on the current OMF website so it would be great to share the link in your signature. Thanks for donating, too!
     
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  12. oceiv

    oceiv Senior Member

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    Here is the info about this study, from Facebook. I'm quoting it here for people who don't like to (I usually don't) or have the energy to click through to Facebook. It sounds like it will be a very comprehensive study, if funded.

    International donations are accepted.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @oceiv Thank you for posting that additional info about the study. You are awesome! :star:
     
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  14. Sasha

    Sasha Fine, thank you

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    I've donated to this before and will do again. I was thinking of getting a new signature so if they've got streamlined donation info I'll have one for them - otherwise, I'll wait a bit until they've been able to sort something out.

    Signatures are a good way to spread the word here, I think.
     
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  15. GracieJ

    GracieJ Senior Member

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    @Gingergrrl Found it! Took a bit... I do think this is where I want my little pennies heading toward.
     
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