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

[Sasha]

I was cleaning out my mailbox late last night and found this response from Dr. Bateman sent in December. I am so sorry I didn't see it earlier.

Thank you for thinking of OFFER. It sounds like a great idea and we'd love to be included. Will you let Frank know and I'll pass the information to the OFFER Board chair.
Lucinda Bateman MD

That's good news, tulip! Must have been good to find a pleasant surprise waiting for you at the bottom of your inbox!

Reminds me that mine needs cleaning out... :headache:

 

[Cort]

Sounds like a good plan, Frank!

Is it possible to have a poll in which people get multiple votes? I set up a poll here on PR a while back and can't remember an option of allowing people more than one vote each.

I think it would be important to give everyone say, 18 votes each to play with (the number we can have on our final list) so that a single organisation doesn't bag the vast majority and leave the rest with just a few votes each, making them hard to rank.

For example, with a single vote I imagine almost everyone would vote for PR and the WPI!

Yes, you can allow multiple choices- the default is a single choice so you have to click a box.

 

[Cort]

As I remember everyone group needs to be listed in the Guidestar Directory to participate. I just put Phoenix Rising in there - but I don't know that all the non-profits will think to do that - so we should check. It's free and just takes a couple of days to get in.

Here are the requirements if they haven't been posted before

• 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.

http://www.guidestar.org/

They have to show operating expenses as well

Each winning Charity may be required to substantiate it meets the eligibility and other requirements of these Official Rules. Those requirements include, but are not limited to, proof of 501(c)(3) status as well as operating expense.

I couldn't find OFFER or the New Jersey CFS Association in there. Go to Guidestar.org and search using chronic fatigue syndrome and it will bring up 35 results

Wisconsin and Vermont CFIDS Association, Rocky Mountain and Dr. Lerner are in there. Virginia has a nice budget! $112,000 dollars -but that was in 2000/ Pandora brought in $77,000 in 2008!

HHV-6 Foundation is in there...there are a 501 3 (c). National CFIDS Foundation brought in $185,000! (who knew?) in 2006... this is fascinating stuff...Lot of groups are not reporting or up to date.

 

[Cort]

I think we need to spread our wings a bit and find some large groups to connect with; a non-profit with a budget just under a million dollars with lots of supporters! If we bring in a couple of them - they could help us with everyone...

I'm checking the Overlapping Conditions Alliance the CFIDS Association is a part of and others

IBS Association is too big )>1,000,000 budget
Endometriosis group looks too big - funding too much research
National Fibromyalgia Association is too big...

TMJ Association is a possibility - about $135,000 budget, nice website and hopefully good outreach into the community
National Vulvodynia Association - budget 333,000
American Fibromyalgia Association - budget 626,000
Fibromyalgia Coalition International - budget 44,000
FIbromyalgia Alliance of America - $47,000
Fibromyalgia Association of America - $50,000
National Fibromyalgia Research Association $92,000
National Fibromyalgia Partnership - $60,000

I looked up multiple sclerosis - 22 organizations on the First page with budgets over $1,000,000! Isn't that amazing?????? What a different world....

Whittemore Peterson Institute - $1,776, 000 in 2008

 

[Sasha]

Great research there, Cort!

So the only two research organisations we don't know about yet are Dr. Chia's Enterovirus Foundation and Dr Bell's Lyndonville Research Group.

Does anyone have any contact with them?

This is a really exciting project - can't wait for the start date to be announced! All that cash just there for the taking...

 

[frenchtulip]

O.F.F.E.R. is listed with Guidestar

I have just received word from O.F.F.E.R. that they are listed with Guidestar.
http://www2.guidestar.org/organizat...n-fatigue-fibromyalgia-education-researc.aspx

I also agree with Cort that we need to "spread our wings" and align ourselves with a few large organizations.

 

[Dolphin]

It's a pity nobody saved who were near the top last time e.g. 201st-300th (or even 201st-400th).
It's something we should try to do this time, whether PR or any other group does win or not (because a different group could be nominated the following time). I think I asked before but I presume no one does have any such information (even if it was saved a bit before the end of the competition).

 

[Cort]

Great research there, Cort!

So the only two research organisations we don't know about yet are Dr. Chia's Enterovirus Foundation and Dr Bell's Lyndonville Research Group.

Does anyone have any contact with them?

This is a really exciting project - can't wait for the start date to be announced! All that cash just there for the taking...

I don't see them in Guidestar..

There's the TMJ association - not too big not to get excited about this opportunity.. $133,000 in income

We should look for orgs with nice membership levels and the ability to get the word out on the internet -with Forums, Facebook, etc.

http://www2.guidestar.org/ReportOrganization.aspx?ein=39-1691109

Glad to hear OFFER is in there.

Yes, that would have been a good idea - to look at the old list and get those orgs who know the ropes involved.

 

[frenchtulip]

One thing I think we can do is appeal to the CFIDS Assn. and the NFA to help us vote even though they will not be in the running. And I'm sure we can count on P.A.N.D.O.R.A. for help.

 

[Sasha]

One thing I think we can do is appeal to the CFIDS Assn. and the NFA to help us vote even though they will not be in the running. And I'm sure we can count on P.A.N.D.O.R.A. for help.

That's a good idea, tulip - I had forgotten that even if some don't qualify to be voted on they would be willing to help anyway!

 

[Cort]

We might try the WPI....income in 2009 was 1,211,000 - if I understood it right....Its possible they might make it under the $1 mill mark for 2010

 

[Frank]

ok good info. I think it's almost time to compile a voting list.

 

[Cort]

CAA as well....a tough year for everyone I imagine. I am going to reach to some of the larger FM groups.

 

[Frank]

I need some help here. I have a lot of things running simultainously and i just can't seem to find time for this. I need someone to go to all previous posts and extract all the organisations that are eligible or supposedly eligible. You don't have to be absolutely certain about it. Type out all these organisations in an alphabetical lists in a reply, Thanks!


CFS crisis center new york 10128 seems to be an unexisting organisation?

 

[Cort]

Requirements and Potential Organizations

Here are the requirements again:

• 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.

 

[Cort]

CFS Orgs

CFS Orgs + some others that a search of the Guidestar database brought up. Unless OFFER is the UTAH group I cannot find it. They must in Guidestar to participate.

[FONT=&quot]AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC[/FONT]
[FONT=&quot]EIN: 73-1416680 [/FONT][FONT=&quot]
[/FONT]
[FONT=&quot]AMERICAN FIBROMYALGIA SYNDROME ASSOCIATION INC[/FONT]
[FONT=&quot]EIN: 77-0355224 [/FONT]

[FONT=&quot]ASIAN-PACIFIC RESEARCH FOUNDATION[/FONT]
[FONT=&quot]EIN: 99-0308039 [/FONT]

[FONT=&quot]BLACKHILLS CHRONIC FATIGUE CFS AND FIBROMYALGIA SYNDROME FMS SUPT GP[/FONT]
[FONT=&quot]EIN: 41-1886796 [/FONT]

[FONT=&quot]CENTRAL VIRGINIA CHRONIC FATIGUE SYNDROME & FIBROMYALGIA ASSN INC[/FONT]
[FONT=&quot]EIN: 54-1882643 [/FONT]

[FONT=&quot]Chronic Fatigue Immune Dysfunction Syndrome Foundation[/FONT]
[FONT=&quot]EIN: 94-3097474 [/FONT]
[FONT=&quot]
[/FONT][FONT=&quot]CHRONIC FATIGUE SYNDROME SOCIETY OF CENTRAL SAN JOAQUIN VALLEY[/FONT]
[FONT=&quot]EIN: 77-0261498 [/FONT]

[FONT=&quot]CHRONIC FATIGUE SYNDROME SOCIETY OF ILLINOIS INC[/FONT]
[FONT=&quot]EIN: 36-3684143 [/FONT]

[FONT=&quot]CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC[/FONT]
[FONT=&quot]EIN: 06-1354867 [/FONT]

[FONT=&quot]CHRONIC FATIGUE SYNDROME FOUNDATION OF GREATER BATON ROUGE INC[/FONT]
[FONT=&quot]EIN: 72-1224367 [/FONT]

[FONT=&quot]CHRONIC FATIGUE SYNDROME FIBROMYALGIA & CHEMICAL SENSITIVIT[/FONT]
[FONT=&quot]EIN: 36-4232894 [/FONT]
[FONT=&quot]
[/FONT][FONT=&quot]CHRONIC FATIGUE SYNDROME CRISIS CENTER INC[/FONT]
[FONT=&quot]EIN: 13-3717655 [/FONT]

[FONT=&quot]CHRONIC FATIGUE SYNDROME FIBROMYALGIA ORG OF GEORGIA INC[/FONT]
[FONT=&quot]EIN: 34-2032081 [/FONT]

[FONT=&quot]CFIDS EMERGENCY RELIEF SERVICES INC[/FONT]

[FONT=&quot]CHRONIC FATIGUE SYNDROME ASSOCIATION OF VIRGINIA INC[/FONT]
[FONT=&quot]EIN: 54-1632831 [/FONT]

[FONT=&quot]DR A MARTIN LERNER CHRONIC FATIGUE SYNDROME FOUNDATION[/FONT]
[FONT=&quot]EIN: 20-8697481 [/FONT]

[FONT=&quot]HELPING OUR PAIN AND EXHAUSTION INC[/FONT]
[FONT=&quot]EIN: 38-3615257 [/FONT]
[FONT=&quot]
[/FONT][FONT=&quot]HHV-6 FOUNDATION[/FONT]
[FONT=&quot]EIN: 20-1043981 [/FONT]

[FONT=&quot]Houston Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Support[/FONT]
[FONT=&quot]EIN: 76-0359231 [/FONT][FONT=&quot]

[/FONT][FONT=&quot]FIBROMYALGIA COALITION INTERNATIONAL[/FONT]
[FONT=&quot]EIN: 48-1236363 [/FONT]

[FONT=&quot]GREATER TALLAHASSEE FIBROMYALGIA SYNDROME & CHRONIC FATIGUE SYNDROM[/FONT]
[FONT=&quot]EIN: 59-3645995 [/FONT]

[FONT=&quot]INDIANA CHRONIC FATIGUE SYNDROME ASSOCIATION INC[/FONT]
[FONT=&quot]EIN: 35-1866407 [/FONT]

[FONT=&quot]MEDICAL PROFESSIONALS PERSONS WITH CHRONIC FATIGUE IMM DYSF SYND INC[/FONT]
[FONT=&quot]EIN: 35-2043733 [/FONT]

[FONT=&quot]MINNESOTA CHRONIC FATIGUE SYNDROME FIBROMYALGIA ASSOCIATION[/FONT]
[FONT=&quot]EIN: 36-3566600 [/FONT]

[FONT=&quot]National CFIDS Foundation, Inc.[/FONT]
[FONT=&quot]EIN: 04-3350621[/FONT][FONT=&quot]
[/FONT]
[FONT=&quot]NATIONAL CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA ASSOCIATION[/FONT]
[FONT=&quot]EIN: 43-1504766 [/FONT]


[FONT=&quot]NATIONAL FIBROMYALGIA RESEARCH ASSOCIATION INC[/FONT]
[FONT=&quot]EIN: 93-1113831 [/FONT]

[FONT=&quot]NEURO-IMMUNE RESEARCH FOUNDATION[/FONT]
[FONT=&quot]EIN: 20-2413512 [/FONT]

[FONT=&quot]NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC[/FONT]
[FONT=&quot]EIN: 22-3367433 [/FONT]

[FONT=&quot]ROCKY MOUNTAIN CFS ASSOCIATION INC[/FONT]
[FONT=&quot]EIN: 84-1178034 [/FONT][FONT=&quot]
[/FONT]
[FONT=&quot]PHOENIX RISING AN NEID CORPORATION[/FONT]
[FONT=&quot]EIN: 27-3313361 [/FONT]

[FONT=&quot]SALINE AREA FIBROMYALGIA SYNDROME & CHRONIC FATIGUE SYNDROME SPRT GR[/FONT]
[FONT=&quot]EIN: 48-1193127 [/FONT]

[FONT=&quot]TMJ Association, Ltd.[/FONT]
[FONT=&quot]EIN: 39-1691109 [/FONT]

[FONT=&quot]UTAH CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME ASSOCIATION[/FONT]
[FONT=&quot]EIN: 87-0503056 [/FONT]

[FONT=&quot]WEST MICHIGAN CHRONIC FATIGUE SYNDROME SUPPORT GROUP[/FONT]
[FONT=&quot]EIN: 38-2806279 [/FONT]

[FONT=&quot]Wisconsin Chronic Fatigue Syndrome Association, Inc.[/FONT]
[FONT=&quot]EIN: 39-1614649 [/FONT]

​

[FONT=&quot]

[/FONT]

 

[Cort]

Here is a list of orgs that participated in the last Chase event. Note that several of them, I can see from a quick look, are not listed (bold) in Guidestar and presumably would have won any money anyway

AMERICAN BLUE RIBBON AWARENESS FOR MYALGIC ENCEPHALOMYELITIS INC Indianapolis, IN 46219
BLACKHILLS CHRONIC FATIGUE CFS AND FIBROMYALGIA SYNDROME FMS SUPT GP
CENTRAL VIRGINIA CHRONIC FATIGUE SYNDROME & FIBROMYALGIA ASSN INC
CFIDS AND FIBROMYALGIA SELF HELP PROGRAM
CFIDS EMERGENCY RELIEF SERVICES, INC.
CFSFM SUPPORT GROUP OF DFW INC
CFS FMS SUPPORT GROUP OF SAN ANTONIO
CFSKNOWLEDGECENTER INC
CHRONIC FATIGUE SYNDROME CRISIS CENTER INC New York, NY 10128
CHRONIC FATIGUE SYNDROME FIBROMYALGIA ORG OF GEORGIA INC
CHRONIC FATIGUE SUPPORT FOUNDATION
CONNECTICUT CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC
GREATER TALLAHASSEE FIBROMYALGIA SYNDROME & CHRONIC FATIGUE SYNDROM
MANASOTA CFS CFIDS SUPPORT GROUP INC
MASSACHUSETTS CFIDS ASSOCIATION, INC.
MEDICAL PROFESSIONALS PERSONS WITH CHRONIC FATIGUE IMM DYSF SYND INC Indianapolis, IN 46219
NATIONAL CFIDS FOUNDATION, INC.
NATIONAL CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA ASSOCIATION Kansas City, MO 64133
NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC
PHOENIX RISING
(RESCIND)
RIVER FALLS AREA CHRONIC FATIGUE & FIBRO MYALGIA SUPPORT GROUP
TACOMA GIG HARBOR CFIDS AND FIBROMYALGIA SUPPORT GROUP
The International Association for CFS/ME
(The Rocky Mountain CFS/ME & FM Association)*
WISCONSIN CHRONIC FATIGUE SYNDROME ASSOCIATION, INC.

 

[Dolphin]

CFS Orgs + some others that a search of the Guidestar database brought up. Unless OFFER is the UTAH group I cannot find it. They must in Guidestar to participate.

Thanks for that.

OFFER is in there:
http://www2.guidestar.org/organizat...n-fatigue-fibromyalgia-education-researc.aspx
(if that doesn't work, search fibromyalgia in Utah).

 

[frenchtulip]

O.f.f.e.r.

Thanks, Dolphin. Yes, O.F.F.E.R. is definitely in Guidestar. I have an email from Dr. Bateman saying they want to be included and they are not a private foundation. Their EIN is: 87-0687610. The link is:

http://www2.guidestar.org/organizat...n-fatigue-fibromyalgia-education-researc.aspx

Or, search for Organization for Fatigue and Fibromyalgia Education and Research. The other Utah group in the list is not O.F.F.E.R.

Thanks so much for creating the list, Cort!

 

[Sasha]

Pacific Fatigue Labs/Workwell Foundation want to be in but need a response from Chase to know if they are allowed in - as far as I know they're still waiting for that.