1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

The BIG CHASE: funding US ME/CFS non-profits

Discussion in 'Action Alerts and Advocacy' started by Frank, Dec 1, 2010.

  1. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    The ME/CFS Worldwide Patient Alliance is not suited for the contest, they operate under the wings of PANDORA.

    That leaves us with the following to check

    Vermont CFIDS Association... http://www.vtcfids.org/
    CFS Solutions of West Michigan... http://www.facebook.com/?ref=mb&sk=m...cfssolutionswm
    RESCIND? not sure they are non profit
    Dr. Lerner's 'Foundation' (will a FOundation work?)
    The Pacific Fatigue Lab Foundation
    Dr. Chia's Foundation
    The LRG (Lyndonville Research Group)
    The Morton Fund @University of Miami (Klimas)
    OFFER, UTAH
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    And a bunch of bears got $100,000!
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Here's one that exists purely to fund medical research that got $20k:

    "The mission of Arms Wide Open Childhood Cancer Foundation is to fund medical research for pediatric cancers and improvements in chemotherapy and alternative therapies."

    and this one promotes research as its only activity:

    "The mission of the OHF is to promote research to find a cure for Oxalosis, PH and related stone diseases and improve the care and treatment of those it affects. "
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Interesting also that the last one to squeak in for $20k did so with 1,481 votes. That should be well within the reach of us if we network well.
     
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    I've just drafted the following which a friend will email out later for me to the research groups on Frank's list (I'm a bit tired!).

    Two things: have I made any mistakes? And, anyone else is welcome to use the text to contact other groups of their choice (you'll have to edit out the bit about research).

     
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    I'm chasing the research groups from Frank's list and could do with some advice on the ones in bold - I don't want to waste their time if they're clearly not eligible but I don't understand some things about the US context :confused::

    Dr. Chia's Foundation [The EnviroMed Foundation acc. an article by Cort but I can't find it on the net; EVMed Research is Dr Chia but it's a company not a charity - am I looking at the wrong thing?]

    The LRG (Lyndonville Research Group) [on their site it says "Please note: donations made to Lyndonville Research Group are not tax deductible." Does that mean they're not eligible? Sorry I don't understand US charity law! But it also says "Checks for tax deductible donations for Dr. Bell can be mailed to The Connecticut CFIDS and FM Association, Inc... Checks must be made out to THEM. In the "memo" should be written "Dr. Bell's Research". Then they will mail us 100% of the donation.Not sure what to make of that for the Chase contest. Anybody?]

    Thanks!
     
  7. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Bumping... Can anybody answer my questions in the above post?

    My friend has now emailed Dr Lerner, Dr Klimas's research fund, the Workwell Foundation (the Pacific Fatigue Lab) and OFFER - will post when we hear back.
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Found the answer to that one - Dr Chia is a director of the Enterovirus Foundation, which includes ME/CFS on the list of disease believed to be related to enteroviruses.

    I'll get my friend to email Dr Bell - he will know himself if the LRG is eligible and if there's any other route to donate if not, I expect.

    Must admit, I'm kind of surprised that there are only these six ME/CFS research charities (plus WPI) in the whole US. Even the UK (no shining example) has three. Are we missing some or is this just an indictment of the system?
     
  9. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Just googling - what about these guys?

    Anybody know any more?
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    And what about the Drs Light? Dr Singh? Others? Does anybody know if it's possible to donate to them via charities at their universities? Most researchers get $$$ donated by external charities but I don't know whether some universities etc. might have themselves set up in such a way that they count as charities from the Chase contest point of view.

    Anybody?
     
  11. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Oh... just seen I've been talking to myself on this thread for the past seven hours... I'm all aloooone... :confused::confused::confused:
     
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,160
    Well done for what you are doing, Sasha. I only came back to the thread now.
    I don't live in the US so can't really answer your questions. Except that if the Lyndonville Research Group was a registered nonprofit, I would assume they would be able to take tax-deductible donations. So I think they will be ruled out. He described them before e.g. often was small money. Sounded to me to be an ad hoc group. But you could E-mail his website and ask.
     
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,160
    Yes. But it was hard work last time.
    PANDORA only got 1,571 Votes and they had lots of different groups to get votes from:
    I wasn't on the internet for the final few days of the contest but before that I put in quite a few hours posting on lots of different FB groups at different stages and also highlighting it elsewhere on the internet. And the number of people who voted would be less than 1571 as one could get a bonus vote. That reminds me that we should try to do that [giving bonus votes] better the next time e.g. don't have everyone giving their bonus vote to Cort.

    Also, there was a blip at the start last time as people thought the WPI could be eligible. But people had 20 votes so shouldn't have been a major problem.
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,160
  15. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Thanks, Dolphin - my friend sent my email to Dr Bell so I hope he's considering how the LRG might benefit.

    I hope with more of a run-up and more splash about it as well as the networking with other groups to form a block vote, we could do very well this time. Phoenix Rising itself is much bigger now than it was in July and will be bigger yet by the time the next contest arrives. Fingers crossed!
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    My friend just heard back from the administrator for Dr Klimas's Morton Fund and unfortunately they're not eligible because the funds go via U Miami which has revenue & expenses of over $2 billion. What a shame. I hope there might be things we can do in future that might benefit them.

    Staci Stevens kindly sent a holding reply - she's keen but needs to check eligibility.

    Just to clarify, the ones that we're checking from Frank's list in post #41 are just the research organisations:

    Dr. Lerner's Foundation
    The Pacific Fatigue Lab/Workwell Foundation
    Dr. Chia's Enterovirus Foundation
    Dr Bell's Lyndonville Research Group
    The Morton Fund @University of Miami
    OFFER

    That leaves, from Frank's list:

    Is anyone checking those?
     
  17. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    So Nancy Klimas Morton Fund is out. The other foundations still can be on the list Sasha or not?

    I will check RESCIND via Tom Hennesey
     
  18. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,155
    UK
    Hi Frank - we're still waiting to hear back at all from the other ones - will post as soon as we get anything. I guess it will take some of them a few days at least to reply (busy/under-resourced!).
     
  19. Carryon

    Carryon Mike Munoz

    Messages:
    48
    Likes:
    3
    Littleton, CO
    I e-mailed with Lori Kroger at CFS Solutions of West Michigan and they currently are not 501c3... they are in the process but probably will not be completed in time

    Mike Munoz
     
  20. Carryon

    Carryon Mike Munoz

    Messages:
    48
    Likes:
    3
    Littleton, CO
    I have now heard back from Rik Carlson at Vermont CFIDS Association... They are a 501C3 "Private Foundation" Anyone know if that falls within the Chase rules?. . If so they would like to be considered but we would need to get them filed with Chase.

    Mike Munoz
     

See more popular forum discussions.

Share This Page