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

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

  1. Sasha

    Sasha Fine, thank you

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

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

    Cort Phoenix Rising Founder

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

    Cort Phoenix Rising Founder

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    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

    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.
  4. Cort

    Cort Phoenix Rising Founder

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    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
  5. Sasha

    Sasha Fine, thank you

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    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...;)
  6. frenchtulip

    frenchtulip Senior Member

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  7. Dolphin

    Dolphin Senior Member

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    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).
  8. Cort

    Cort Phoenix Rising Founder

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    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.
  9. frenchtulip

    frenchtulip Senior Member

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    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.
  10. Sasha

    Sasha Fine, thank you

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    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!
  11. Cort

    Cort Phoenix Rising Founder

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    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
  12. Frank

    Frank Senior Member

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

    Cort Phoenix Rising Founder

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

    Frank Senior Member

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    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?
  15. Cort

    Cort Phoenix Rising Founder

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    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.
  16. Cort

    Cort Phoenix Rising Founder

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    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]
  17. Cort

    Cort Phoenix Rising Founder

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    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

  18. Dolphin

    Dolphin Senior Member

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  19. frenchtulip

    frenchtulip Senior Member

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    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!
  20. Sasha

    Sasha Fine, thank you

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    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.

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