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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Chase Community Giving Contest for Small Non-profits-Nov 8 to 22-$3M in Prize Money

Cort

Phoenix Rising Founder
A Good day for CFS Non-profits!CFS KnowledgeCenter is up from 32 all the way to 19th and are now on the first page of the leaderboard. Five of the groups moved up or stayed up... The IACFS/ME moved up 3 spaces, Wisconsin moved up 2, RMCFA stayed the same, New Jersey fell 7 and the Enterovirus Foundation fell 16 points and is just barely hanging on in the top 100 at 99.

CFSKnowledge Center - #19
AACFS (IACFS/ME) - #42
Wisconsin - #50
RMCFA - #53
New Jersey - #69
Mass CFIDS - #78
Enterovirus Foundation - #99


Congratulations to the CFSKnowledgeCenter for such a strong push!

The IACFS/ME put out a call to its members to vote today and the CFIDS Association put a shout out on their Facebook page. I am holding some of my votes in reserve in order to use for alliances later in the contest.
 

Dolphin

Senior Member
Messages
17,567
helen41 said:
The ME charities that have expressed interest and submitted the necessary info to Chase are listed here:

- American Association for Chronic Fatigue Syndrome, Inc. (=IACFS/ME) Chicago, IL http://bit.ly/s48mcK http://www.iacfsme.org/

- Rocky Mountain CFS/ME and FM Association Denver, CO http://bit.ly/s5fAJh http://www.rmcfa.org/index.html FB http://on.fb.me/uqyE5r

- Cfsknowledgecenter, Inc. Wellington, FL http://bit.ly/lkvWpU http://www.me-cfscommunity.com/ http://www.facebook.com/CFSKnowledgeCenter

- Wisconsin Chronic Fatigue Syndrome Association, Inc. Sun Prairie, W http://bit.ly/mlmr0c http://www.wicfs-me.org/

- New Jersey Chronic Fatigue Association, Inc. Florham Park, NJ http://bit.ly/tXpa46 http://www.njcfsa.org/ FB http://on.fb.me/sZfzJb

These two groups have expressed interest, but don't yet have their profiles up on the Chase site:

- Massachusetts CFIDS Association, Inc. Quincy, MA http://bit.ly/sJXeQ9 http://www.masscfids.org/

- Enterovirus Foundation, Inc. San Francisco, CA http://bit.ly/lzhRfi http://www.enterovirusfoundation.org/ FB http://www.facebook.com/EVForg
Three of my relatives and I have now voted for the top 6. We might vote for the 7th one later. I think it's useful to hold some votes for any potential alliances. I have two more relatives who have shown before they're willing to listen to me - but easiest to wait till I have 10 to suggest to them.
Couldn't restrain myself and have just voted for the Enterovirus Foundation - it's still hanging in there in 99th. It looks to me that these are the main ones in contention at the moment - and there's a big gap to anything below them. If the Enterovirus Foundation could tap into the polio vote (say), it might take off.
 

Dolphin

Senior Member
Messages
17,567
Is polio something that many are still afflicted by?

GG
I have come across polio groups over the years - I think they are more for the developing world. Post-polio syndrome is quite common - maybe similar prevalence to ME? (I seem to recall a similar prevalence for Ireland although that was a few years ago).

---
Just searched CCG for polio - 29 results nearly all with polio in their title. It might be too risky to write to (i) polio groups in the US - as they would likely want to win and/or help other polio groups and (ii) polio groups in other countries may be similar. Although if the Enterovirus Foundation did it themselves, perhaps they would have success.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
These seven groups also seem to be the groups with the most votes. The top 6 are in the top 100 i.e. the prize-winning positions while the enterovirus foundation. If one wants to vote tactically, they seem to be the ones to concentrate on at this stage.

How do you get to post such a large signature? I copied it, and the forum said it needed to be under 1000 characaters. So I cut it down, and then it said it needed to be under 500. I gave up at this point!

GG
 

Dolphin

Senior Member
Messages
17,567
How do you get to post such a large signature? I copied it, and the forum said it needed to be under 1000 characaters. So I cut it down, and then it said it needed to be under 500. I gave up at this point!

GG
I've no idea. Sssshhhh!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The orgs can use their names and call it what they want. And we do NOT have to agree upon them. But what they claim to represent or want money for should have to "exist" in some officially recognized manner.

They need money for ME or CFS. Not what this says or denotes. So what is the money for? ME/CFS research? Which is? It is not recognized and does not officially exist in the US. Is it OK to collect money for something that you make up or to which you assign your own meaning or designation?

The Coalition has done this and declared to NCHS that there are 4000 papers published on ME/CFS. This is patently false. A medline search turned up 46, not 4000.
They cannot rewrite their own script, or at least sell it a science.

The right ones to take it up with it the actual orgs saying the things you (and many others dont like, myself included) not Chase. It is the orgs themselves with do their profiles and not Chase who does them. What the orgs do is nothing to do with chase but to do with the actual orgs themselves...

The battle is with the orgs.. not with those who have nothing to do with how things are.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I copied your signature, Dolphin. Thanks.

(whispers: I don't know why I'm allowed a long sig, but not complaining!)

GG, you could try putting the links under text. either write a word/prhase like main site or facebook, go advanced, highlight, and use the "blue globe with an infinity" icon to add the link, or simply type (url="www.website.com")main site(/url) -- only use square brackets [ ] instead of normal parentheses. Then the characters of the websites will not count toward your signature.

I might do that, actually. Might be easier to read.
 

Dolphin

Senior Member
Messages
17,567
The 7 groups are still in the top 100. Assuming that none got in the top 5, that would be $175,000 ($25,000x7)! Well worthwhile putting in the effort to vote, and encouraging others to vote.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I copied your signature, Dolphin. Thanks.

(whispers: I don't know why I'm allowed a long sig, but not complaining!)

GG, you could try putting the links under text. either write a word/prhase like main site or facebook, go advanced, highlight, and use the "blue globe with an infinity" icon to add the link, or simply type (url="www.website.com")main site(/url) -- only use square brackets [ ] instead of normal parentheses. Then the characters of the websites will not count toward your signature.

I might do that, actually. Might be easier to read.

willow.. your signature is certainly easier to read. (I couldnt get my head around doing that myself).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Leadership board changes

CFSKnowledge Center - #19 still 19
AACFS (IACFS/ME) - #42 now 35 (up)
Wisconsin - #50 same 50
RMCFA - #53 now at 54 (down)
New Jersey - #69 now 72 (down)
Mass CFIDS - #78 now 73 (up)
Enterovirus Foundation - #99 now 98 (up)

Everyone needs to vote on Enterovirus if we want to keep this ME/CFS group still in the top 100 to get money. There is only a 5 point difference from where it is now and the 100th place.
 

Hope123

Senior Member
Messages
1,266
Don't have contact with the major non-US groups like the ME Association, Invest in ME, ESME, Spanish groups, but has anyone notified them of the contest and that we could use help from our non-US counterparts? It seems like at least someone on Co-Cure put out a notice to some Norwegian groups.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
Update, as we have added Enterovirus Foundation to the engaged list. The charities that have expressed interest and submitted the necessary info to Chase are listed here:

- American Association for Chronic Fatigue Syndrome, Inc. (=IACFS/ME) Chicago, IL http://bit.ly/s48mcK http://www.iacfsme.org/

- Rocky Mountain CFS/ME and FM Association Denver, CO http://bit.ly/s5fAJh http://www.rmcfa.org/index.html FB http://on.fb.me/uqyE5r

- Cfsknowledgecenter, Inc. Wellington, FL http://bit.ly/lkvWpU http://www.me-cfscommunity.com/ http://www.facebook.com/CFSKnowledgeCenter

- Wisconsin Chronic Fatigue Syndrome Association, Inc. Sun Prairie, W http://bit.ly/mlmr0c http://www.wicfs-me.org/

- New Jersey Chronic Fatigue Association, Inc. Florham Park, NJ http://bit.ly/tXpa46 http://www.njcfsa.org/ FB http://on.fb.me/sZfzJb

- Massachusetts CFIDS Association, Inc. Quincy, MA http://bit.ly/sJXeQ9 http://www.masscfids.org/

- Enterovirus Foundation, Inc. San Francisco, CA http://bit.ly/lzhRfi http://www.enterovirusfoundation.org/ FB http://www.facebook.com/EVForg

(Massachusetts CFIDS Association has completed their profile page (it doesn't show yet because there is a delay while Chase reviews it), and Enterovirus Foundation is working hard on theirs, so both were included in the group of 'engaged' charities)
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Don't have contact with the major non-US groups like the ME Association, Invest in ME, ESME, Spanish groups, but has anyone notified them of the contest and that we could use help from our non-US counterparts? It seems like at least someone on Co-Cure put out a notice to some Norwegian groups.

The fundraising group admins and some other team members are working on this and are mostly down to "cold" contact now, so if anyone knows any group leaders and would like to help, I'm sure it would be appreciated. (PR names for most of the admins here, and FB names them in the FB group - they should be listed in the Purpose/How it Works document).

There were English notices on Co-Cure, too, for those that aren't on that listserve and don't already know (in addition to the one with the link to a Swedish-language blog). Both the fundraising group and cfsknowledgecenter have been sending notices through Co-Cure.
 

frenchtulip

Senior Member
Messages
760
These ME/CFS/CFIDS orgs have all made it onto the leaderboard and are in line to win $25,000 each, if we can keep them there.

- American Association for Chronic Fatigue Syndrome, Inc. (=IACFS/ME) http://bit.ly/s48mcK

- Rocky Mountain CFS/ME and FM Association http://bit.ly/s5fAJh

- Cfsknowledgecenter, Inc. Wellington, FL http://bit.ly/lkvWpU

- Wisconsin Chronic Fatigue Syndrome Association, Inc. http://bit.ly/mlmr0c

- New Jersey Chronic Fatigue Association, Inc. http://bit.ly/tXpa46

- Massachusetts CFIDS Association, Inc. http://bit.ly/sJXeQ9

- Enterovirus Foundation, Inc. San Francisco, CA http://bit.ly/lzhRfi

Chronic Fatigue Syndrome Fibromyalgia Org of GA is now actively involved in the contest and seeking votes. http://bit.ly/kdavB3