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

Frank

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ONLY WPI AND CAA ARE IN THE CONTEST
In 2011, the Chase community giving voting contest on Facebook is likely to take place again. Last year P.A.N.D.O.R.A. won $20 000, because enough of us voted for them. Every facebook user got 20 votes they could use on 20 different non-profit organisations and also two gift votes which could be used to vote on organisations you already voted for or on other organisations for which you hadn't voted before. Now, if all the people that voted on PANDORA also voted on 19 other ME/CFS organisations, they too could have all won $20 000. Of course there are more then 19 other (ME/CFS) organisations in the contest and that's why a lot of votes where distributed over many different organisations. Also most people didn't use up all their votes!
This year however, we want to create a priority list, which lists 18 ME/CFS organisations (and reserves). The selection will happen based on a big poll. The winner of this poll will be our main target (we'll ask friends to vote on this one, use our gift votes for it,...). Numbers 2-18 will go for at least $20 000.
I will organise the poll and also following things:
-Creating a facebook event page, where we can have an estimate of the people that will be participating in the contest and will vote on at least 18 CFS orgs.
-Instructional video and info
-Setting up a contest information center during the contest

If prizes are the same as in 2010, then there is a potential of winning $950 000 ! total.

Questions or remarks, please shoot!

STEP ONE IS TO CREATE A SHORTLIST CONTAINING ALL ORGANISATIONS PARTICIPATING IN THE 2011 CHASE GIVING CONTEST please tell me what organisations are missing, you can look them up here: http://apps.facebook.com/chasecommunitygiving/search PLEASE POST THEM TO THIS THREAD IN BOLD

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.
PANDORA and WPI are out

*The brackets mean they didn't participate in last years contest


"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."
 

Sasha

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Interesting idea, Frank! I like the idea of us all working together. But are any of these groups research organisations? No offence to Phoenix Rising (!) or PANDORA which are both fantastic organisations but with such big bucks on offer I'd like to prioritise giving to medical research if that's an option, and be able to support a group such as the WPI. Or would the support groups consider donating part of their winnings to research organisations?

If it was small amounts I wouldn't feel it was an issue but if we're really in the running for nearly $1 million between them all this seems like a lot to gain for support organisations while biomedical research is starved of funds. I like to give to both but a greater proportion to research.

I hope I am not throwing a spanner in the works (you may need this :headache:)!
 

Frank

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Sasha WPI was excluded from the contest last time, because they had to big turnover (or money). If you know research organisation that are willing to sign up to the contest we'll add them.
 

Sasha

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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?
 

Tuha

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Frank, you have always good ideas. I think this need a good preparation - then we will have less stress to get the people for voting. This will be international competition (if it will be like the last time) - so also non U.S. people can vote. So for example I will tell about this competition on my national forum web site and how i know, the last time in sommer some people voted for Pandora. On PR forum are a lot of foreign people - so they could do the same. If someone from another country read this thread maybe he can write it here if he can post it on a national forum - or maybe we can do a poll for it? I have also cfs facebook list with around 50 cfs facebook pages - so I can put there an announce about the competition when it will start.
other suggestions are welcome.

Sasha, I also think that it would be good to have there some good research institutes. Maybe we can directly ask cfs researchers - if it would be interesting for them and how could it be possible to involve them in the competition (throught an organisation or I dont know how). I think here are some people who are in touch with cfs researchers who could maybe contact them. or do we have a list of them or how could we contact them? - I am not so strong in research area.
 

Cort

Phoenix Rising Founder
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The non-profit had to have below 1 million budget so WPI and CAA were out. In some ways the research question is moot because there aren't that many CFS research orgs that are non-profit in the US - ie we should be able to fit everybody we can in there.

Great idea Frank

Dr. Klimas's research would be a great choice if its a non-profit - it is surely less than a million dollars :) - its the kind of small charity that we could really help out if we all worked together. There's Dr. Lerner's 'Foundation' (will a FOundation work?), The Pacific Fatigue Lab Foundation and Dr. Chia's Foundation. We have to find out which of these are FOundations and which are Non-profits and if it matters.

We should find out when the campaign is, contact all the organizations well ahead of time, do a Facebook registration campaign for everybody - get them to enroll their members in it, and then have everybody vote for the same set of groups. Frank can hopefully do his video's again. We can set up a site to transfer votes to.

I think we should also think strategically and for other NEID non-profits such a FM, IBS or whatever that have large memberships that we can sync up with. If we can partner with a couple of those we might be able to blow this thing out of the water.

Here's a really good one - Ehlors Danhlos Foundation - a natural fit for us - they were #9! Teaming up iwth them would be a great idea

http://apps.facebook.com/chasecommunitygiving/charities/912041609-eds-today

Autism was #14 with 6,000 votes

http://apps.facebook.com/chasecommunitygiving/charities/270048002-talk-about-curing-autism

we can catapult each other forward. We had about 1,600 votes I think - we started late and didn;t really get engaged. We can do much better this time.

http://apps.facebook.com/chasecommunitygiving/charities/770355224-american-fibromyalgia-syndrome-association-inc
 

LaurelW

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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.
 

shannah

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Sounds like Dr. Bell has plans if he had funding. Charitable donations with a tax receipt have to made through another organization though at this point. Perhaps if someone contacted him a different arrangement could be made though.

http://www.davidsbell.com/


The LRG (Lyndonville Research Ggroup) is not tax exempt, but there is a local charity that is tax exempt and can be used. Questions may be directed to myself at lynnews@davidsbell.com.

Please note: donations made to Lyndonville Research Group are not tax deductible.

Checks for tax deductible donations for Dr. Bell can be mailed to:

The Connecticut CFIDS and FM Association, Inc.
PO Box 3010
Milford, CT 06460

800-952-2037
860-659-3651

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.


Research Group News

I would like to thank the research group for its work and all of you for supporting the group financially. As I mentioned above, we have an NIH grant, and I am a consultant to this grant. As such, I will receive no funds from the NIH for this, and I am perfectly OK with that. All the preliminary data accrued came from your generosity. Your contributions, through Connecticut CFIDS Assn or otherwise, have paid for mailing of questionnaires, blood collection supplies, travel to conferences for myself, statistical help, and pizza for the meetings. So far I have not embezzled funds for a new kidney-bean swimming pool, and have no intentions to do that in the future. The expensive stuff, meaning the XMRV assays, have been paid for from other sources. So we here in Lyndonville are doing just fine. If there are a lot more conferences, that will be good, because it means that there is positive news to report. If that happens, we may need some support.

Are there new studies in the works? At this point we are quite busy although nothing has shown to the outside world. We did get an NIH grant and that requires pilot data however. My hopes for the future would be to do a comprehensive pediatric study with many of the known researchers sending samples from children and adolescents as well as controls, and possibly a comprehensive neurologic study on the neurological symptoms present in persons positive for XMRV. These studies are way off in the future, and the NIH funding process, if it happens at all is very slow. These studies cannot be done by the research fund’s petty cash. They are major cash. So if anyone has $100,000 and wants to do one of these, let me know……
 

frenchtulip

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Frank, you are really on the ball with your progressive ideas! I am thrilled to see this kind of proactive thinking. If we form a voting coalition, we can win some nice cash.

By all means, I think OFFER should be included. I believe they are helping to fund Dr. Ila Singh's XMRV research.
 

Carryon

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helen41

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I love the idea of partnering with FM and autism- we seem to have so much in common and both are huge, strong communities. If I had to get this crappy disease, at least I got it when there's a hope for change on the horizon. Great idea, Frank
 

Frank

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Cort, this working together with Autism and other communities is a great idea. In this way we can for once finish above the pets organisations.. (not that i have anything against them)


Dr. Klimas's research would be a great choice if its a non-profit - it is surely less than a million dollars :) - its the kind of small charity that we could really help out if we all worked together. There's Dr. Lerner's 'Foundation' (will a FOundation work?), The Pacific Fatigue Lab Foundation and Dr. Chia's Foundation. We have to find out which of these are FOundations and which are Non-profits and if it matters.

We should find out when the campaign is, contact all the organizations well ahead of time, do a Facebook registration campaign for everybody - get them to enroll their members in it, and then have everybody vote for the same set of groups. Frank can hopefully do his video's again. We can set up a site to transfer votes to.

I think we should also think strategically and for other NEID non-profits such a FM, IBS or whatever that have large memberships that we can sync up with. If we can partner with a couple of those we might be able to blow this thing out of the water.

Here's a really good one - Ehlors Danhlos Foundation - a natural fit for us - they were #9! Teaming up iwth them would be a great idea

http://apps.facebook.com/chasecommunitygiving/charities/912041609-eds-today

Autism was #14 with 6,000 votes

http://apps.facebook.com/chasecommunitygiving/charities/270048002-talk-about-curing-autism

we can catapult each other forward. We had about 1,600 votes I think - we started late and didn;t really get engaged. We can do much better this time.

http://apps.facebook.com/chasecommunitygiving/charities/770355224-american-fibromyalgia-syndrome-association-inc
 

Tony

Still working on it all..
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I just had a look at the Chase giving eligibility. "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."

So it seems PANDORA would be excluded as they won 20K this year. It's a great idea Frank, to get organised well before time. With this much money going I'd really like to see some of the bigger $'s go to research, so OFFER is my first choice so far.
 

Dolphin

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The Enterovirus Foundation

If they are eligible, another one to consider is the Enterovirus Foundation that John and Andrew Chia are directors of:

http://www.enterovirusfoundation.org/index.shtml

is a non-profit organization created to fund research to discover the persistent effects of enteroviruses, to determine the role they play in both acute and chronic disease, and to develop treatments to cure and prevent these diseases.
 

Dolphin

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IACFS/ME=American Association for Chronic Fatigue Syndrome inc

In case it's missed, the AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC is now called the International Association for CFS/ME and I think would be a good one to include if 20 or nearly 20 are being put forward.

They aspired to have a research fund (I think they set a target of $1m) but I'm guessing they didn't raise much for it.
 

Dolphin

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I think we should also think strategically and for other NEID non-profits such a FM, IBS or whatever that have large memberships that we can sync up with. If we can partner with a couple of those we might be able to blow this thing out of the water.

Here's a really good one - Ehlors Danhlos Foundation - a natural fit for us - they were #9! Teaming up iwth them would be a great idea

http://apps.facebook.com/chasecommunitygiving/charities/912041609-eds-today

Autism was #14 with 6,000 votes

http://apps.facebook.com/chasecommunitygiving/charities/270048002-talk-about-curing-autism

we can catapult each other forward. We had about 1,600 votes I think - we started late and didn;t really get engaged. We can do much better this time.

http://apps.facebook.com/chasecommunitygiving/charities/770355224-american-fibromyalgia-syndrome-association-inc
Good thinking except if previously winners such as PANDORA are excluded, they will be also.
 

Dolphin

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HHV-6 Foundation

People connected to MS and maybe some others might vote for them.

About the HHV-6 Foundation

The HHV-6 Foundation in a non-profit entity founded by Kristin Loomis and Annette Whittemore in 2004 to encourage scientific exchange between scientists and to provide pilot grants for promising scientific and clinical research.

The first priority of the Foundation is to support efforts to develop better laboratory tests that can differentiate between chronic, active, and latent infections. Since this virus can retreat to the brain and other tissues and disappear from the serum, finding a sensitive diagnostic tool is a challenge. The Foundation is working hard to promote efforts to develop better techniques.

Another important priority for the Foundation is to encourage efforts to find antiviral compounds that are appropriate for long-term use. The Foundation has supported several in vitro studies of antiviral efficacy at both commercial and academic laboratories, including a comprehensive screening done for us at the Rega Institute in Belgium and the Laboratory of Virology at the University of Paris in France.

The Foundation sponsors a large international conference every other year and encourages collaboration between scientists. Our 2006 International Conference on HHV-6 & 7 in Barcelona was attended by 165 scientists from 19 countries. The Foundation supports basic research by funding pilot grants and has funded a dozen grants to date. These awards allow investigators the seed funds to gather preliminary data in order to apply for larger grants. The Foundation maintains a repository of patient samples and valuable reagents that scientists need for research (purified virus, monoclonal antibodies, cell lines, etc.)

Dharam Ablashi, co-discoverer of the HHV-6 virus and veteran of the National Cancer Institute, is the Institutes Scientific Director. Kristin Loomis, a graduate of Harvard Business School, serves as the President and Executive Director.