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

[Frank]

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

 

[Sasha]

Thanks for bringing the astonishing win by blind cats to our attention, Sasha.

And a bunch of bears got $100,000!

 

[Sasha]

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. "

 

[Sasha]

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.

 

[Sasha]

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).

Dear XX,

I’d like to alert you to a possible fundraising opportunity. Chase Community Giving, who gave away $5 million in July 2010 to 200 different charities after a similar programe in October 2009, is planning a new round of donation for 2011. The funds are allocated according to public online voting on Facebook; in the 2010 contest, 195 charities received $20,000 each, the four runners up $100,000 and the winner $250,000.

Cort Johnson, who runs the ME/CFS advocacy/support website, is planning to coordinate an effort to maximise money raised for ME/CFS and allied charities by drawing up a priority list of charities for which to vote, and networking online to attract supporters to vote for the shortlist members in the contest. Each Facebook member can vote for 18 different charities in the contest with two additional votes to be cast at will, so 18 charities will be shortlisted. The threshold for receiving $20,000 in the 2010 contest was around 1,430 votes so this should be easily achievable for the ME/CFS community; indeed, ME/CFS advocacy group PANDORA won $20,000 in the last contest.

Phoenix Rising members will shortly be voting on the 18-strong shortlist and we would like to know whether you will be entering the contest so that we can vote for you. Biomedical research is tremendously important to people with ME/CFS and I expect that you would get a lot of support.

Assuming the rules will be as before, in order to enter the contest, a charity must:

• be recognized as a 501(c)(3) public charity in the Guidestar database as of March 30, 2010;
• be available for selection through the Chase Community Giving application as of 06/02/10;
• be 501(c)(3) public charities and not be subject to any U.S. sanctions;
• have annual operating expenses of $1,000,000 or less based on most recent IRS filings or otherwise substantiated through audited financial statements;
• be listed in IRS Publication 78;
• not be designated by the IRS as a private foundation;
• not have been awarded any grants through a previous Chase Community Giving program; and
• use all of the grant received from the program to promote or benefit one or more of the following categories: primary or secondary education, youth development, healthcare, housing, community development, the environment, combating hunger, arts and culture, human services, and animal welfare."

Further background is available on the Chase Community Giving page on Facebook, here: http://apps.facebook.com/chasecommunitygiving/

If you will be entering the contest, please let me know as soon as possible so that I can notify Phoenix Rising that you should be added to the list that will be voted on to create the 18-strong group that we'll be campaigning for.

Yours sincerely,
XX

 

[Sasha]

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 :

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!

 

[Sasha]

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.

 

[Sasha]

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?]

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?

 

[Sasha]

Just googling - what about these guys?

The HHV-6 Foundation -- Based in Santa Barbara California, the HHV-6 Foundation was founded in 2004 by Annette Whittemore and Karen Loomis. The foundation's goal is to “encourage scientific exchange between scientists and to provide pilot grants for promising scientific and clinical research”. The foundation focuses its efforts on developing better tests for HHV-6, a virus that may play role in CFS. Their website, http://www.hhv-6foundation.org, offers complete information on HHV-6, their directors and scientific advisors, and relevant research. The site also features a online donation form, featuring easy donation via Paypal account.

Anybody know any more?

 

[Sasha]

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?

 

[Sasha]

Oh... just seen I've been talking to myself on this thread for the past seven hours... I'm all aloooone...

 

[Dolphin]

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.

 

[Dolphin]

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.

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:

Our mission embraces neuroendocrineimmune disorders (NEIDs) such as chronic fatigue syndrome-ME, fibromyalgia, chronic Lyme disease, multiple chemical sensitivity (environmental illnesses), and Gulf War Syndrome/Illnesses.

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.

 

[Dolphin]

Just located the list of last year's winners, here.

Down the bottom of that link is the list of the 100 winners from 2009:
http://apps.facebook.com/chasecommunitygiving/program_recap_2009 . Unfortunately, one can only see name and order, one can't see votes, etc.

 

[Sasha]

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.

Thanks, Dolphin - my friend sent my email to Dr Bell so I hope he's considering how the LRG might benefit.

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.

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!

 

[Sasha]

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:

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

Is anyone checking those?

 

[Frank]

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

 

[Sasha]

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!).

 

[Carryon]

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

 

[Carryon]

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