List of ME/CFS charities as potential Chase nominees?

[frenchtulip]

I contacted the founder of NIDA and told her that NIDA was on the Chase list and has been nominated. She was going to check with Chase to see if they are in fact eligible this year. Last year's rules didn't allow them to participate because they don't do their own research (fund Simmaron). Hopefully, the rules are different this year.

 

[Merry]

I contacted the founder of NIDA and told her that NIDA was on the Chase list and has been nominated. She was going to check with Chase to see if they are in fact eligible this year. Last year's rules didn't allow them to participate because they don't do their own research (fund Simmaron). Hopefully, the rules are different this year.

Interesting. I wonder what Chase will say. Thanks, frenchtulip.

 

[frenchtulip]

Merry, do you think we should nominate Neuro-Immune Dysfunction, Tarzana, CA and Neuro-Immune Dysfunction Syndromes Advisory Medical Board, Black River, NY?

Also, Chronic Fatigue Syndrome Fibromyalgia & Chemical Sensitivity, Black River, NY? Would you want to nominate or would you like for someone else to nominate? You may be tired of nominating.

I will be looking for contact info for all three.

 

[Merry]

Hi, frenchtulip. I emailed you about this. Ok with me if more are nominated. I can nominate or the other person. Or both of us. Let me know if you find contact info. The last day to nominate is the 9th, I think. Six more days Chase says on its website, and I counted on my fingers, and Chase is right.

 

[Merry]

These two organizations have now been nominated:

Chronic Fatigue Syndrome, Fibromyalgia & Chemical Sensitivity Coalition of Chicago Wilmette, IL

Neuro-Immune Dysfunction Syndrome (NIDS) Tarzana, CA

 

[Purple]

The Open Medicine Foundation mentioned earlier could be The Open Medicine Institute. Dr Kogelnik's foundation. Their website doesn't mention their charitable status though but there is an email address for contact.

http://www.openmedicineinstitute.org/Welcome.html

 

[Merry]

"The Open Medicine Institute" is not in the Chase database either. Sorry, Purple. I looked at the institute website for a physical location -- or street address -- but didn't see one. If I knew the address, I could try a search with location.

I believe someone above said that this is a new organization. All the paperwork for charitable status needed to be filed by the end of December 2011.

 

[Merry]

The Open Medicine Foundation mentioned earlier could be The Open Medicine Institute. Dr Kogelnik's foundation. Their website doesn't mention their charitable status though but there is an email address for contact.

http://www.openmedicineinstitute.org/Welcome.html

Hi, Purple. I found a Mountain View, California, address for Open Medicine Institute, but no charities come up for that location in the Chase database. See my message above also (forgot to hit "reply").

 

[Merry]

ME/CFS large organizations nominated for Chase Community Giving 2012

Rocky Mountain CFS/ME and FM Association

Phoenix Rising an NEID Corporation​

​

CFIDS & Fibromyalgia Self-Help Program​

New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA)​

Wisconsin ME/CFS Association, Inc.​

Enterovirus Foundation​

Connecticut CFIDS & FM Association, Inc.​

Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia (CFOG)​

Organization for Fatigue and Fibromyalgia Education and Research (OFFER)​

RESCIND​

Neuro-Immune Disease Alliance (NIDA)​

Dr. A. Martin Lerner Chronic Fatigue Syndrome Foundation​

​

HHV-6 Foundation


ME/CFS small organizations nominated for Chase Community Giving 2012

Blackhills Chronic Fatigue CFS and Fibromyalgia Syndrome FMS Support Group

Central Virginia Chronic Fatigue Syndrome

American Fibromyalgia Syndrome Association, Inc

Fibromyalgia Coalition International

National Chronic Fatigue Syndrome and Fibromyalgia Association

CFIDS Emergency Relief Services, Inc

Helping Our Pain and Exhaustion, Inc.

CFSFM Support Group of DFW

National Fibromyalgia Research Association

Chronic Fatigue Syndrome, Fibromyalgia & Chemical Sensitivity Coalition of Chicago Wilmette, IL

Neuro-Immune Dysfunction Syndrome (NIDS) Tarzana, CA

 

[Merry]

The Open Medicine Foundation mentioned earlier could be The Open Medicine Institute. Dr Kogelnik's foundation. Their website doesn't mention their charitable status though but there is an email address for contact.

http://www.openmedicineinstitute.org/Welcome.html

Hi, again, Purple.

GuideStar, the directory of US charities, doesn't list "Open Medicine Foundation" or "Open Medicine Institute."

 

[frenchtulip]

Aug. 6-30: Early Nomination Acceptance Period: Letters went out yesterday to the ME/CFS org's that were nominated (with the exception of a couple for which we do not yet have email addresses) with info about what they need to do during this period to share in the $2.5 million grant. They must complete all the paperwork and meet all requirements by Aug. 30 and receive at least one vote in the public vote in Sept.
For requirements, please see: https://www.chase.com/online/Specia...ine/Special-Offers/ccg_redirect.htm?nptag=CCG

 

[Merry]

Of the thirteen large organizations that I nominated (see above list, post #69), eleven have yet to supply Chase with an updated mission statement and appoint an administrator. New Jersey Chronic Fatigue Syndrome Association, Inc. and HHV-6 apparently have updated their mission statements to Chase's satisfaction but still need to appoint an administrator.

Charities can contact Chase at support@chasegiving.com. The Early Deadline for supplying Chase with the required information is 30 August.

Note: I had trouble finding the Connecticut organization in Chase's database. Rather than "Connecticut CFS & FM Association, Inc." it is listed as "Connecticut-chronic Fatigue and Immune Dysfnctin Syndrome Assoc. Inc." I had to go through several pages of search results to find it (the Chase search engine is not good). I can see how this may be a problem for the Connecticut organization during voting if it chooses to participate.

 

[Aileen]

Which organization is the one that actually has its act together? I'd like to know who the eager beaver is so we know who is really serious about this. That will help us figure out who to vote for when the time comes.

 

[Merry]

Which organization is the one that actually has its act together? I'd like to know who the eager beaver is so we know who is really serious about this. That will help us figure out who to vote for when the time comes.

Exactly, Aileen.

If I'm remembering the rules correctly, organizations have until the end of the voting to provide all the information Chase requests, but I'd be reluctant to vote for an organization that isn't ready by the time voting starts the 6th of September.

And a reminder that for a share of the 2.5 million early deadline grant, organizations have to fulfill all entry requirements by the 30th of August.

 

[frenchtulip]

I have left messages at Facebook asking Healing Our Pain and Exhaustion (H.O.P.E.) for an email where I can send the contest info. (I also messaged Dr. Sharon O., the nonprofit leader.) Posts are being made by H.O.P.E., but they have not responded to my request. They may not have much info about the contest or be aware of the Early Nomination Acceptance grant money.

I heard back from the Enterovirus Foundation leader. She has been very busy, but hopes to get the paperwork done this week for the Nomination Acceptance. EF did very well last time.

You're right, Merry. Nonprofits have until the end of the public vote to get the paperwork in.

 

[frenchtulip]

I hope to start on a list of international ME/CFS organizations--with email addresses, so we will have that ready when it's close to voting time. There are actually many, many org's, but guess it might be best to concentrate on the largest or most active. If anyone would like to take a country or continent and compile a list of ME/CFS org's, that would be great. Or, if anyone knows of an org outside the U.S. that we should include, please list it here along with email address, if you have it. Thanks.

 

[Merry]

Thank you, frenchtulip. Would a new thread be helpful to solicit the names of international ME/CFS organizations and their email addresses? Or do more threads confuse people?

 

[Nielk]

Thank you Merry, frenchtulip, Aileen and all others who are working on this.

 

[frenchtulip]

Merry, starting a new thread for ME/CFS Org's (with URL's and email addresses) might be a really good idea. If individuals would like to take a country or continent, find the ME/CFS org's, URL's, and email addresses, that would be really helpful. Perhaps the individuals could also monitor the org's websites and/or Facebook pages to see if the Chase Contest info we will be sending gets posted. If not, we could perhaps post it on the organizations' Facebook pages as has been done in the past (Plan B).

There are various lists of ME/CFS org's. Here are two:
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS
http://www.cfsknowledgecenter.com/support-groups.php
If you know of others, would you please post.

I started on Australia tonight. I will be working on Australia and New Zealand. We may need to stick mainly to the English-speaking countries unless we can find translators.

 

[frenchtulip]

Rocky Mountain RMCFA has reported that they are all set for the contest and Chase has posted them at the contest site. Check it out: https://www.facebook.com/ChaseCommunityGiving?sk=app_162065369655&fb_source=message