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

[justinreilly]

Some of them are interested in research and some specifically aren't. I thought the ones specifically interested in research might feel closest to us and what we were looking for (although I am confused as to what the WPI money is going for atm - I had read that the clinic couldn't use the charity money in Dr Deckoff Jones' blog - but thought I read something saying the opposite with regard to Chase Community Giving. I imagine when they say what the $500,000 will be spent on, it will become clear). Although then a problem with that was that some were for conditions that seem to affect and kill children so maybe they wouldn't feel as close to us. Also, perhaps the distinction I'm making makes less of a difference to the average voter who might like a charity that gives support services but still likes research (at board level or whatever, the difference might be more in focus).

I think the fact that we're competing against 'less worthy' causes like drum corps would bind us together with any other illness group regardless of research or other orientation.

 

[Hope123]

I think we should band with the people that are close to the 100-drop-off as they are more desperate for votes and less likely to be a challenger in Round 2. Banding with top orgs only makes the competition closer.

And for those who disparage drum corps:

http://www.youtube.com/watch?v=YJVdnMAGIt8

But really, it's hard to see us trounced by drum corps and a pack of wolves.

 

[justinreilly]

I think for the purposes of the contest, it is likely against the rules. One Facebook account per user although people have used tricks as I understand in certain situations to bypass this -- don't do this for Chase though -- we don't want to be disqualified.

However, contrary to what others say, I don't think there is a rule on Facebook that you have to use your true name or give true information on your account. I regard it as I would any other e-mail/ forum account where only one of my accounts has my true name. Not having true or having little info on my "play" accounts means less chance of identity theft and less chance of being bombarded by advertisers/ spam.

There is definitely a Facebook rule that you have to use your real name and they are serious about it (unless they have changed this recently, but i doubt it). Lots of people do it, but if you're caught they can be harsh- closing down your main/real account for good.

They are strict about weird things.

 

[justinreilly]

Good you're strategizing, Justin.
One thought I had looking through the lists was that there were quite a few wildlife/wild animal charities and then a few more charities dealing with domesticated animals. So "animal lovers" may use up their five votes in round #2 so might not be generally great to pair up with?

good point. hadn't thought of that. Maybe Joyful Heart (domestic violence and sexual assault), Norfolk Botanical Gardens, Arcadia Educational Foundation (high ranking non-drum corp, non-pets orgs) plus illness orgs. Or then again, maybe we do need to focus only on lower down orgs because of the competition.

fwiw- Jewish charities are another group that has probably been banding together.

Edit: To make this more clear: if we can't figure out a way to monitor/enforce compliance (which would probably be very difficult) then I think we will have to ally only with lower ranking orgs. Who knows about game theory and how it would apply here?

 

[beesknees]

My guess to why the Drums Corps are doing very well is due to the fact that most of their voters are probably teens. Teens are on Facebook. They have all their teen friends plus their entire highschool to vote. They all probably have 50-200 friends on Facebook. Add in mom and dad, brothers and sisters. Not to mention people of all ages that used to be in the drum corps. That starts adding up. If I'm not mistaken some of them travel and perform at shows. So you add in fans.

The number of voters for the wolves and wildlife center puzzle me a bit. I know there's animal lovers out there but it seems like a lot of votes. I'm sure the wildlife orgs have teamed up. The only thing I can think of is to point out the fact the most of animals the Wildlife Center protects like bunnies are enemies of wolves. So there vote is a vote for the enemy. I'm partially kidding. It's late my brains tired.

 

[beesknees]

Is Chase giving away more than 500,000 in round two? I just checked the site. It says FAN VOTES can help you win $500K. THE ADVISORY BOARD will grant an additional $500K!!!

 

[justinreilly]

Is Chase giving away more than 500,000 in round two? I just checked the site. It says FAN VOTES can help you win $500K. THE ADVISORY BOARD will grant an additional $500K!!!

Looks like it!:

The Advisory Board will make additional grants totaling $500,000 to charities in the Top 100. One charity will receive a $200,000 Advisory Board grant based on their Big Idea. And $300,000 will be distributed among other charities at the Advisory Boards discretion.
These grants can add to the donations your charity may receive as a result of fan votes. After all, Big Ideas deserve big money!
Here's how it works:
The Advisory Board will review the Top 100 charities Big Ideas. Then theyll select five charities to present their Big Ideas for grant consideration.
Based on the presentations, the Advisory Board will select one charity to receive an additional $200,000 that could help bring their Big Idea to life.
The remaining $300,000 will be awarded in varied amounts to other charities in the Top 100.

So, we're talking about up to $1.4M for the two top orgs! Let's start organizing now! If you use chat, pls ask people to come over to this thread and participate in the discussion and/or 'sign up' as volunteers to do stuff. I suggest we drop all other advocacy efforts and get everyone to really focus on this until the contest is over.

Are there one or more people who can volunteer to co-ordinate the efforts? Let's really get organized for maximum votes. I can help, but may not have the time to co-ordinate.

Maybe we can have another thread, where the first post is updated often with info- lists of who is doing what and what needs to be done. I will start one when we get a little organized.

We could get organized with a to do list and then send out a PR action alert, co-cure post, etc. asking people to check it out and sign up to do things.

 

[justinreilly]

My guess to why the Drums Corps are doing very well is due to the fact that most of their voters are probably teens. Teens are on Facebook. They have all their teen friends plus their entire highschool to vote. They all probably have 50-200 friends on Facebook. Add in mom and dad, brothers and sisters. Not to mention people of all ages that used to be in the drum corps. That starts adding up. If I'm not mistaken some of them travel and perform at shows. So you add in fans.

The number of voters for the wolves and wildlife center puzzle me a bit. I know there's animal lovers out there but it seems like a lot of votes. I'm sure the wildlife orgs have teamed up. The only thing I can think of is to point out the fact the most of animals the Wildlife Center protects like bunnies are enemies of wolves. So there vote is a vote for the enemy. I'm partially kidding. It's late my brains tired.

great points, beesknees!! I like the bunny angle! : )

I think you're right about the fact that younger people are extremely important! They are on FB and have lots of friends and don't think twice about signing up for a new app (and letting the app see their 'personal info'). How can we get more young people involved? This could really be the key.

Is there anyone who has contact with young people, such as teaching, coaching a team or leading a youth group?
What facebook groups with young people could we target?
I will contact the Healkick web forum for younger pwME.


To clarify what I was talking about earlier:
if we can't figure out a way to monitor/enforce compliance (which would probably be very difficult) then I think we will have to ally only with lower ranking orgs.

Who knows about game theory and how it would apply here?


fwiw- I oppose CAA, but I am supporting them in the Chase contest. Their current research slate is good and an extra few hundred thousand for ME research via CAA would be huge for us (even if some of it gets siphoned off for McCleary and Vernon's excessive salaries).

 

[Tuha]

I have one question about the rules. Will we keep the votes from the first round for the second round or all the organisations in second round will start from zero? I havent seen anything about this point in the rules.

I already wrote it but i will repeat it because this thread is already big. My biggest strategie for the second round is to ask my facebook friends directly to vote. So it means during the week of the second round I will be all day long online on my facebook page - you can always see your facebook friends if they are online - if someone will be online I will ask him directly through facebook chat if he has 3 minutes time and if yes if he can vote. Like this you can help him or to talk to him if he needs some informations. The last year when we voted for PANDORA it worked really good for me- after facebook chat from my 50 facebook friends - 30 voted. noone refused just pity that i didnt find everyone online during the competition. At first I send an email to all my facebook friends and from 50 only 3 voted. When I asked them later during the chat why they didnt vote earlier - it was always like - we didnt have time, we forgot, we didnt understand,.....so i think direct asking through facebook chat work much better.

 

[Dolphin]

Maybe we can have another thread, where the first post is updated often with info- lists of who is doing what and what needs to be done. I will start one when we get a little organized.

A new thread sounds good as this long thread might put some people off. Maybe something with a heading like: "Help win over $1m for ME/CFS research - Round #2 Chase Community Giving preparations" (or whatever). I can't be a co-ordinator but will probably do stuff.

 

[Dolphin]

WPI and CAA are down as winners

Final leaderboard now up:
http://apps.facebook.com/chasecommunitygiving/

Interestingly, in the last 6 hours, 100th position went from 418 to 490. Voting clearly gets frenetic towards the end.

 

[Dolphin]

fwiw- I oppose CAA, but I am supporting them in the Chase contest. Their current research slate is good and an extra few hundred thousand for ME research via CAA would be huge for us (even if some of it gets siphoned off for McCleary and Vernon's excessive salaries).

Great.

When I was looking up the CAA and the WPI on Guidestar, I noticed that JM has a big salary also.

If it goes into the CAA's research program as a research-specific donation (don't know if will definitely happen here or not but often if a charity says a money is for research that is what would happen), it would only pay towards SV's salary.

 

[beesknees]

A new thread sounds good as this long thread might put some people off. Maybe something with a heading like: "Help win over $1m for ME/CFS research - Round #2 Chase Community Giving preparations" (or whatever). I can't be a co-ordinator but will probably do stuff.

I think a new thread is a great idea! I'd like to see one just for brainstorming ideas for round two.

 

[Dolphin]

I think a new thread is a great idea! I'd like to see one just for brainstorming ideas for round two.

Ok, I just set one up:

http://forums.phoenixrising.me/show...research-brainstorming-for-Round-2-Chase-comp
"Helping to win $900,000+ for ME/CFS research - brainstorming for Round 2, Chase comp"
(I was at the character limit in case anyone things I should have said more)

 

[Dolphin]

I thought I'd post the final list as it might be a useful record (it will get deleted) and also some of the discussions about health groups just above are out-of-date as some didn't make it (and perhaps others did?):

1 YOUTH EDUCATION IN THE ARTS Allentown, PA 6,382
2 DRUM CORPS INTERNATIONAL INC Indianapolis, IN 5,727
3 INTERNATIONAL WOLF CENTER Ely, MN 3,690
4 WILDLIFE CENTER OF VIRGINIA Waynesboro, VA 3,092
5 Whittemore Peterson Institute for Neuro-Immune Disease Reno, NV 2,978
6 Joyful Heart Foundation New York, NY 2,607
7 GLASSMEN JR DRUM & BUGLE CORPS INC Maumee, OH 2,573
8 SCV Santa Clara, CA 2,512
9 NORFOLK BOTANICAL GARDEN SOCIETY Norfolk, VA 2,339
10 VINEYARD COMMUNITY CENTER Westerville, OH 2,087
11 The Blue Devils Concord, CA 1,955
12 ARCADIA EDUCATIONAL FOUNDATION Arcadia, CA 1,918
13 DOGS FOR THE DEAF INC Central Point, OR 1,858
14 Petfinder.com Foundation Tucson, AZ 1,838
15 HOBY Westlake Village, CA 1,774
16 WINTER GUARD INTERNATIONAL INC Miamisburg, OH 1,753
17 GLOBAL KIDS INC New York, NY 1,701
18 MENC: The National Association for Music Education Reston, VA 1,524
19 WILDLIFE WAYSTATION Angeles National Forest, CA 1,455
20 MUSIC FOR ALL INC Indianapolis, IN 1,451
21 AMIGOS Houston, TX 1,394
22 CGAUXA St Louis, MO 1,175
23 The CFIDS Association of America Charlotte, NC 1,078
24 CONEJO JEWISH DAY SCHOOL Agoura Hills, CA 1,078
25 Children of Chernobyl (CCOC) New York, NY 1,009
26 International Rett Syndrome Foundation Cincinnati, OH 986
27 CHEDER CHABAD-MONSEY Monsey, NY 970
28 NMF Port Washington, NY 949
29 The Akshaya Patra Foundation USA Stoneham, MA 941
30 SPCA of Westchester Briarcliff, NY 926
31 NEW HAVEN HEBREW DAY SCHOOL INC Orange, CT 917
32 Break the Cycle Los Angeles, CA 911
33 Asha for Education New York, NY 870
34 OHOLEI YOSEF YITZCHAK LUBAVITCH Oak Park, MI 864
35 CHABAD HOUSE OF CONN INC West Hartford, CT 862
36 The Anti-Cruelty Society Chicago, IL 857
37 JCC ROCKLAND INC West Nyack, NY 827
38 NJ SEEDS Newark, NJ 827
39 Charleston Animal Society North Charleston, SC 789
40 SOAR CHARTER ACADEMY San Bernardino, CA 787
41 CHABAD OF ARGENTINA RELIEF APPEAL INC New York, NY 780
42 Save-A-Pet Grayslake, IL 779
43 GRASSROOT SOCCER INC Norwich, VT 770
44 Water Missions International Charleston, SC 750
45 SPARTANBURG CHARTER SCHOOL Spartanburg, SC 746
46 OCRF New York, NY 727
47 SONIA AND MAX SILVERSTEIN HEBREW ACADEMY Great Neck, NY 721
48 HILLEL ACADEMY INC Milwaukee, WI 719
49 PET HELPERS INC Charleston, SC 706
50 AMERICAN FRIENDS OF LUBAVITCH Washington, DC 701
51 WOMEN MAKE MOVIES INC New York, NY 698
52 National MPS Society, Inc. Durham, NC 689
53 FARF Eugene, OR 679
54 Clean Water Fund Washington, DC 663
55 YouthBuild Philadelphia Charter School Philadelphia, PA 662
56 One Heartland Inc. Milwaukee, WI 659
57 CHRISTIAN RELIEF FUND Amarillo, TX 646
58 CASS COMMUNITY SOCIAL SERVICES INC Detroit, MI 642
59 PARENT-CHILD CENTER INC Riviera Beach, FL 632
60 THE ARBOR SCHOOL Houston, TX 628
61 Binder Park Zoo Battle Creek, MI 622
62 Instituto Chicago, IL 618
63 SANDRA AND LEON LEVINE JEWISH COMMUNITY CENTER INC Charlotte, NC 615
64 Chicago Coalition for the Homeless Chicago, IL 613
65 Florida's Vision Quest Orange City, FL 611
66 RESTORATION MINISTRIES INC Harvey, IL 605
67 SYMPHONY SILICON VALLEY San Jose, CA 598
68 Architecture for Humanity San Francisco, CA 597
69 EPILEPSY FOUNDATION OF FLORIDA INC Miami, FL 596
70 YSA Washington, DC 595
71 CVLS Chicago, IL 591
72 RIDGELINE MONTESSORI PUBLIC CHARTER SCHOOL Eugene, OR 586
73 Shelter Network Burlingame, CA 585
74 MT HOOD KIWANIS CAMP INC Portland, OR 580
75 The Shakespeare Center of Los Angeles Los Angeles, CA 575
76 HISTORIC CHARLESTON FOUNDATION Charleston, SC 572
77 NO LONGER BOUND INC Cumming, GA 571
78 RUSSIAN JEWISH COMMUNITY CULTURAL CENTER W Hollywood, CA 570
79 THE LITTLE LIGHT HOUSE INC Tulsa, OK 568
80 A.I.F. New York, NY 567
81 SOILLE SAN DIEGO HEBREW DAY SCHOOL San Diego, CA 553
82 Let's Get Ready New York, NY 551
83 TWP Fort Collins, CO 549
84 PSLS Rockford, IL 548
85 Children of the Night Van Nuys, CA 547
86 Junior Achievement of Northern Indiana, Inc. Fort Wayne, IN 541
87 CRISIS MINISTRIES Charleston, SC 540
88 Peace Over Violence Los Angeles, CA 532
89 SCA Charleston, SC 531
90 SOUTH CAROLINA COASTAL CONSERVATION LEAGUE INC Charleston, SC 528
91 Wheeling Symphony Orchestra Wheeling, WV 527
92 Baltimore Child Abuse Center Baltimore, MD 526
93 IWS Chicago, IL 525
94 San Diego Community Housing Corporation San Diego, CA 525
95 IMMIGRANT SOCIAL SERVICE INC New York, NY 523
96 T A G New York, NY 507
97 AFC New York, NY 500
98 Cancer Care Services Fort Worth, TX 491
99 Kansas City Repertory Theatre, Inc. Kansas City, MO 491
100 Resurrection Project Chicago, IL 490

 

[Dolphin]

I realised something earlier which I thought I'd highlight:

Charities only get one shot at round 2 - after the one, both the WPI and the CAA will never be eligible again*.

So we need to make an all-out effort.

*Indeed this time next year, there may be a contest for charities with turnovers of over $1m where there are no eligible ME/CFS charities.

 

[justinreilly]

Illness/ Medical Orgs

Potential Allies:

Other Illness/ Medical Orgs in the Contest (finalized list, place a end of Round 1):
13. Dogs for the Deaf
26. Intl Rhett Syndrome Foundation
28. Nat Marfan F
44. FANCONI ANEMIA RESEARCH FUND
53. The National MPS Society
65. FLORIDA'S VISION QUEST
69. EPILEPSY FOUNDATION OF FLORIDA INC
93. Infant Welfare Society of Chicago
96. Treatment Action Group (AIDS)
98. Cancer Care Services

 

[Dolphin]

Flyer for meetings, etc. worldwide to help win $900,000 for ME/CFS Research

I made up a flyer for the seats of a meeting this week. I thought I'd post it in case it might be of use to other people.

I don't expect to win any design contests with it but if people don't have time to do anything fancier, hopefully it'll do the job. Feel free to adjust for your own purposes if you want, although it should work anywhere (hopefully).

It can also be linked to at:
http://bit.ly/mLgsxO
or
http://www.co-cure.org/Flyer_CCG_Round_2.pdf

Here's the flyer attachment:
View attachment Flyer_CCG_Round_2.pdf

 

[Dolphin]

It would be great if people could write to lots of ME/CFS groups

I spent quite a lot of hours last week preparing a flyer and then highlighting all over Facebook and some other mailing lists and a few websites. I have some other work to catch up on now (didn't get much work done today - was my nephew's first Holy Communion and there was a big family gathering here).

I think it'd be good if people wrote to local/State/regional/national/international ME/CFS (and FMS/MCS/GWS) groups and I don't think this should necessarily wait till after the contest has started as groups may take a while to act (possibly 1/2/3 days) and not everyone will see it immediately. And then one wants to give people as much time as possible to rope in other people to vote - get one person with ME/CFS to vote and the first reaction for a lot of people will be to try to get other people they know (or perhaps don't know!) to vote.

Just over 4 days to the start of voting which lasts 7 days.

 

[Dolphin]

Yeah, I notice some people don't log into FaceBook every day so give them time.

But I'm also talking about people contacting ME/CFS groups by E-mail - they may need to discuss it a little amongst themselves and then may have a weekly E-mail or whatever they may send out (which would likely lead to a delay) or even if they didn't delay for that reason, people may not read e-mails immediately, especially people with ME/CFS.