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

[Frank]

no this is a one time vote gaston, but it takes a few steps to vote..
Good to know that PANDORA is excluded.

 

[Cort]

What about the organization Dr. Bateman set up? It's called OFFER. I bet their budget is under a million dollars.
This is from their web page:

OFFER is a Utah-based, charitable, 501(c)(3), non-profit organization devoted to eradicating Chronic Fatigue Syndrome and Fibromyalgia.
OFFER works to accomplish that goal by spearheading research, education, and advocacy for individuals who suffer from these debilitating illnesses. OFFER was organized to raise awareness of chronic fatigue syndrome (CFS) and fibromyalgia (FMS), to provide patients and professionals with information and advocacy, and to support research into the causes and treatment of CFS and FMS.

There's more at www.offerutah.org.

Somehow I think OFFER will fit in there - they're perfect - just the kind of organization we want to get in there. Great idea.

 

[Cort]

Thanks Tony for checking out the rules!
That sucks about PANDORA. It also means we can't partner with those other groups.

It also means we need to network and find other charitable groups who were not part of the effort before - who meet the criteria and are under 1,000,000 budget but who have a large membership. I suggest other health groups. We could start with the groups the CAA is allied with on their Campaign to End Pain in Women, there's gotta be some big Lyme groups and FM groups. We should get a registry of non-profit health groups.

It also means this is our ONE shot! Let's make a good one. I hate rule six or whatever it is - but there it is......

 

[Cort]

I want to set up a committee to get this going and get set up for the Contest (which hopefully will occur ). I nominate myself.

 

[Sasha]

Should we be focusing on trying to get research $$$ for ME/CFS?

Thanks Tony for checking out the rules!
That sucks about PANDORA. It also means we can't partner with those other groups.

What other groups? Bit baffled by the rules.:headache:

I still like the idea of focusing as much as we can on research money for ME/CFS - I can see the advantages of an alliance with other groups but I'm a bit concerned about diluting potential ME/CFS money.

For example, the Campaign to End Pain in Women seems a bit peripheral when there are small university-based ME/CFS research groups such as Nancy Klimas's who might be eligible to receive $$$ from this campaign, if they did but know it. Organisations such as the Campaign to End Pain in Women, once they become aware of this opportunity, might well have groups more specific to their own remit that they'd rather team up with - I wonder if we could even end up losing votes to other organisations and taking a risk if we bring potential big hitters into the contest.

ETA: Aww! My unhappy Scotsman icon isn't working! Someone has kidnapped all the smiley faces! Maybe they're all in some big govt Area 51 with the UFOs...

 

[calzy]

Thanks, Frank - I didn't know about the turnover restriction. I don't know about other research institutes in the US - does anyone? Is Nancy Klimas's thing a research institute?

Dr. Klimas has a fund/charity called "The Morton Fund @University of Miami", named after someone who died from CFIDS. She said she has stretched that small fund to do many productive things, IE: buying lab equipment for cfs reasearch that the university wont buy, I cant remember the other things. She is very close to valadating the XMRV test according to Dr. Rhe. So I think that fund would be just what the Dr. ordered. lol Poor Dr. Klimas, her dept. is treated like the red headed step child. (sorry red heads out there) the University vastly underfunds her and her great work.

 

[Frank]

Please contact people that have an organisation that could be suitable, and ask them if they want to promise they will be submitting to the contest.

 

[Cort]

If we partner with a few big players then we should increase everyone else's chances. Since everyone is new every time we really have something of a leg up since we participated without winning any money last time.

 

[Dolphin]

Is there a list anywhere of numbers 201-300 last time. Or did anyone save? They'd be among the favourites this time and it'd be good to partner with one or more of them if it was suitable.

 

[Frank]

I've added The Rocky Mountain CFS/ME & FM Association to my shortlist.

Do you know another ME/CFS non-profit, please contact them and ask them if they are willing to submit to the next Chase contest. If so communicate about it in this thread, so the organisatin can be added to the shortlist.

If someone can contact the following and ask if they are willing to submit and also check if they are eligble and under what exact name they are going to submit:

ME/CFS Worldwide Patient Alliance... http://mcwpa.org/
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

 

[frenchtulip]

Fibromyalgia and Autism Groups

IMHO, we need to form a voting coalition with some other large groups of patients--like those affected by Fibromyalgia and Autism. The American Fibromyalgia Syndrome Association, Inc. in Tucson, AZ participated but did not get many votes. Is the budget of the National Fibromyalgia Association toobig? I have registered at GuideStar.org and should soon be able to check their 990 form. If they do not qualify, what about other large Fibromyalgia groups?

Talk About Curing Autism won and would be ineligible, but what about other large Autism groups?

 

[shannah]

Talk About Curing Autism won and would be ineligible, but what about other large Autism groups?

LIA - Lyme Induced Autism ?

 

[Dolphin]

IMHO, we need to form a voting coalition with some other large groups of patients--like those affected by Fibromyalgia and Autism. The American Fibromyalgia Syndrome Association, Inc. in Tucson, AZ participated but did not get many votes. Is the budget of the National Fibromyalgia Association toobig? I have registered at GuideStar.org and should soon be able to check their 990 form. If they do not qualify, what about other large Fibromyalgia groups?

Talk About Curing Autism won and would be ineligible, but what about other large Autism groups?

The thing to look out for is turnover under/over $1m/year, as far as I know.

 

[Sasha]

"In order to be eligible to receive a donation through the Program, 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."

I'm thinking of the ME/CFS research institutions and am thinking that all of the criteria will be understood for them except the first one I've bolded - what does it mean to be available? Do you just have to say you're available?

Also, again with the research groups in mind, does the second bolded criterion rule them out? I can't see any category on there that would include research (a pity it wasn't "combatting disease" rather than "combatting hunger"). "Healthcare" presumably means provision of care, not research.

Any views? Actually, looking at this I can't see how PANDORA fit last time and they won a prize so maybe I am just not good at understanding these categories!

ETA: Anybody have a clue what "human services" are? :headache:

 

[Merry]

"Healthcare" presumably means provision of care, not research.

Any views? Actually, looking at this I can't see how PANDORA fit last time and they won a prize so maybe I am just not good at understanding these categories!

ETA: Anybody have a clue what "human services" are? :headache:

Hi, Sasha.

If I said "human services" means "social services," would that make more sense to you?

I would say that the term "healthcare" includes research.

Merry

 

[Dolphin]

I would say that the term "healthcare" includes research.

Merry

I had a quick look at the winners:

AUTISM RESEARCH FOUNDATION 1,952 Votes

MISSION STATEMENT

Since 1990, TARF has been seeking to expand and accelerate research into the pervasive developmental disorders by studying the neuropathology of autism in our own laboratories, informing the autistic community of the need for brain donations in order to expand the present understanding of these disorders, collecting and redistributing brain tissue for use by research projects, bringing researchers from a variety of fields together to share and exploring new avenues of research at Autism Think Tanks. We are also educating parents, teachers and other professionals about the neurobiological foundations of autism through brochures, conferences and our Web site.

 

[Sasha]

Hi, Sasha.

If I said "human services" means "social services," would that make more sense to you?

I would say that the term "healthcare" includes research.

Merry

Thanks, Merry! Looks like none of the ME/CFS organisation we'd like to support are involved in social care.

"Healthcare" still worries me, though. Some charities specifically rule out health research while allowing health care, which suggests that many charities might make that distinction. I'm a bit worried about inviting research groups to go into the competition and then finding it's a waste of their time (that could have been spent on research!) if they turn out to be ineligible.

 

[Sasha]

I had a quick look at the winners:

Since 1990, TARF has been seeking to expand and accelerate research into the pervasive developmental disorders by studying the neuropathology of autism in our own laboratories, informing the autistic community of the need for brain donations in order to expand the present understanding of these disorders, collecting and redistributing brain tissue for use by research projects, bringing researchers from a variety of fields together to share and exploring new avenues of research at Autism Think Tanks. We are also educating parents, teachers and other professionals about the neurobiological foundations of autism through brochures, conferences and our Web site.​

Thanks, Dolphin - I'm still wondering whether the fact that this group offered education made them eligible. I'll have a look at the winners' list later to see what others there are.

 

[Sasha]

Just located the list of last year's winners, here. A charity home for blind cats won $20,000! Blind cats! What the...???

If blind cats can get $20,000 we have to wipe the board! We just have to!

 

[Merry]

Blind cats! What the...???

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