1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

Chase Community Giving Contest for Small Non-profits Coming Soon--$3MM in Prize Money

Discussion in 'Action Alerts and Advocacy' started by frenchtulip, Oct 5, 2011.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    Good idea about the poll, Tuha. Best to do it this week.

    I would recommend somebody contacts the National CFIDS Foundation to see if they are interested in taking part. I voted for them before, thinking they had a chance, but they didn't try to get votes out it seemed. However, when I was promoting the contest the following time, people connected with the organization were quite negative, saying that it was about helping the Morgan Chase company brand. There was a small bit of aggro so I don't want to ask them. But they could get quite a lot of votes one way or another - which might be wasted if they're not going to push it (but they might have a chance if they do go for it). The money they raise goes towards research generally.

    Actually I've just remembered that somebody involved in running RESCIND (who I saw Marly Silverman was plugging for the contest) was also quite negative before, saying that it was about helping the Morgan Chase company brand, so might be worth contacting them to see if they are interested or not.
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I'm getting together a list. So far I have

    CFSKnowledgeCenter
    Wisconsin
    Rocky Mtn
    Mass CFIDS
    New Jersey
    IACFS/ME
    CFS Georgia
    NCFoundation
    Martin Lerner Foundation
    Enterovirus Foundation

    These groups need to get their act together and rally their membership if this is going to work. Only Rocky Mtn and CFSKnowledgeCenter have updated their profile pages.

    I am in touch with Wisconsin, and am sending emails to those I can.
    PANDORA and Dolphin like this.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Sorry about missing your message. (I looked and I couldn't find it actually. Maybe it didn't go through?)
  4. frenchtulip

    frenchtulip Senior Member

    Messages:
    515
    Likes:
    181
    I have been working on a list of nonprofits in the contest. Thus far, we have:

    Rocky Mountain CFS/ME and FM Association Denver, CO http://bit.ly/s5fAJh

    Wisconsin Chronic Fatigue Syndrome Association, Inc. Sun Prairie, WI http://bit.ly/mlmr0c

    Chronic Fatigue Syndrome Fibromyalgia Org. of Georgia, Inc. Kennesaw, GA http://bit.ly/kdavB3

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

    Chronic Fatigue Syndrome, Fibromyalgia & Chemical Sensitivity Wilmette, IL http://bit.ly/jAPq2Z

    Neuro Immune Disease Alliance, Inc. Agoura Hills, CA (Fund-raises for Dr. Daniel Peterson's Simmaron Research) http://bit.ly/kd5qCx

    New Jersey Chronic Fatigue Association, Inc. Florham Park, NJ http://bit.ly/tXpa46

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

    Connecticut Chronic Fatigue and Immune Dysfunction Syndrome Association, Inc. Milford, CT http://bit.ly/uqIqF7

    American Association for Chronic Fatigue Syndrome, Inc. Chicago, IL http://bit.ly/s48mcK

    National CFIDS Foundation, Inc. Needham, MA http://bit.ly/sdn7BL

    Blackhills Chronic Fatigue CFS and Fibromyalgia Syndrome FMS Support Group Rapid City, SD http://bit.ly/miotT9

    Central Virginia Chronic Fatigue Syndrome & Fibromyalgia Association, Inc. Charlottesville, VA http://bit.ly/t7QVtl

    Dr. A. Martin Lerner Chronic Fatigue Syndrome Foundation Beverly Hills, CA http://bit.ly/w0HfV4

    American Fibromyalgia Syndrome Association, Inc. Tucson, AZ (Promotes research, education, and advocacy for Fibromyalgia and CFS) http://bit.ly/rXNspc

    Fibromyalgia Coalition International Mission, KS (Provides support for persons with Fibromyalgia and CFS) http://bit.ly/sDuISF

    National Chronic Fatigue Syndrome and Fibromyalgia Association Kansas City, MO http://bit.ly/kkIlau

    CFIDS Emergency Relief Services, Inc. Northport, AL http://bit.ly/t5CPEn

    Tacoma Gig Harbor CFIDS and Fibromyalgia Support Group Gig Harbor, WA http://bit.ly/l09xKa

    Helping Our Pain and Exhaustion, Inc. Novi, MI (Promotes knowledge and awareness of Fibromyalgia and CFS) http://bit.ly/va6wmu

    CFIDS and Fibromyalgia Self-Help Program Palo Alto, CA http://bit.ly/kfjQuZ

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

    RESCIND, Inc. Boca Raton, FL http://bit.ly/u75QB2

    CFSFM Support Group of DFW, Inc. (Dallas Fort Worth) Euless, TX http://www.bit.ly/sohrk7


    The link following each organization is the link to their voting page.

    The Administrative Board of the ME (ME/CFS) Fundraising Group is planning a strategy meeting very soon. Perhaps they and PR can coordinate strategizing efforts.
    Cort, PANDORA and Dolphin like this.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    frenchtulip's list looks like it might be good enough, or close to good enough, to have a poll on. Maybe the poll could be set up in, say, 24 hours (or 48 hours) on that list and any other qualified non-profits that can be added in the meantime.

    ETA: poll could let you vote 10 times, but you don't have to - by not voting for some charities, it does give extra weight to your vote. People could then decide how many non-profits they want to vote for e.g. In the Chase contest proper, I probably won't vote for 10 at the start and instead maybe vote for 5 (?) and see if voting swapping is an option. At the same time, if an ME/CFS non-profit I hadn't voted for starts to come into contention, I would still have votes left to give to them. An alternative might be to restrict the poll to less than 10 votes, so that people are more forced to pick their favorites. Anyway, I possibly shouldn't over-analyse it/make it too complicated.

    But as I said, it would be good to also find out which groups are not really interested in the contest. As I said, people with/closely connected with RESCIND and NCF were voicing ethical objections about it so it would be good to find out the situation there.
  6. Tuha

    Tuha Senior Member

    Messages:
    744
    Likes:
    814
    So there are at least 23 ME/CFS organisations. How Dolphin said it would be good to know if these organisations want to take a part in this competition. We need their activ participation.Its not worth to vote for them if they dont want. it would be good to know it before making poll.

    what frenchtulip said "The Administrative Board of the ME (ME/CFS) Fundraising Group is planning a strategy meeting very soon. Perhaps they and PR can coordinate strategizing efforts." This coordination would be usefull to dont do different things what could be contraproduktiv. Is someone in touch with them? we have only 1 week left.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    I heard it might be on Wednesday but isn't set yet. So as you suggest, perhaps wait until after that to have the poll. In the meantime, people can be contacting groups.
  8. SpecialK82

    SpecialK82 Senior Member

    Messages:
    882
    Likes:
    459
    USA
    I think it would be worthwhile, as we ask each organization if they would like to be promoted, if they would explain to us how their winning money would be used. And it should be specific and transparent.

    Then in the poll (which is a great idea), we can list the project to be funded by each group. It would make voting a lot easier as many of us don't know the difference between these orgs.

    I'd be more than happy to contact a few if we can divide the list up!
  9. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    Sounds reasonable but I don't think groups should be forced to nominate one or two projects - they may prefer to have the freedom to spend the money generally to support their work in which a general description would still be useful (to know the sort of things they do). "Core funding" is very useful for nonprofits.
  10. SpecialK82

    SpecialK82 Senior Member

    Messages:
    882
    Likes:
    459
    USA
    That's true, sometimes they do need core funding. My issue is that I cannot really get a handle on what some of these orgs do, from looking at their websites. For instance, are they mainly support groups for PWC's, or do they actively advocate? Do they financially support members to travel to CFSAC meetings, do they help connect PWC's with government aid, do they donate to research organizations, etc. It would be nice to have a clearly defined statement of what they do if they ask for core funding, or alternatively, what specific project(s) would be undertaken.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    Makes sense. Especially if some of us are going to look for votes for them from others.
  12. Aileen

    Aileen Senior Member

    Messages:
    597
    Likes:
    467
    Canada
    I second this. Well put SpecialK. I also do think it is necessary that all the organizations be asked if they want to be promoted in this contest so we don't waste votes on organizations that aren't interested. Perhaps those that are not interested will at least ask their members if they will support the ones that are.
  13. shannah

    shannah Senior Member

    Messages:
    836
    Likes:
    160
    Can someone help me out here please.

    Dr. Enlander is tyring to raise funds for his GcMaf treatments. He has another charitable foundation (other than the one I posted earlier as part of Mt. Sinai) that is listed on Guidestar as 'Derek and Caron Enlander Foundation' (since 2001) that looks like it should qualify. I can't find it listed at Chase although I've tried entering various versions and abbreviations etc.

    Is there another way to search for this that would be more successful?

    What should be done next? Contact Chase?

    Appreciate suggestions. Thanks.
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
  15. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    I think the belgium team is ready for voting, 230 people in private facebook group, 600+ in mailing list.
    WillowJ and Dolphin like this.
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Great list FrenchTulip! This is pretty easy for me. I would pick the most active groups for a start


    And then Look at Fibromyalgia Groups that are available with large memberships. I see I already have 10 CFS groups....hmmm

    And try and learn about the rest. Honestly I think we should pair up with a few FM groups with large memberships and really get the votes going.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,585
    Likes:
    5,188
    Did you see that the IACFS/ME is in it (see AACFS)?
  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Whoops! - my mistake - they should be in there :) (I put them in there).

    I have written up blurbs for most of them and I am going to put that on the Front Page section of the Forums. If we decide which 10 to support I can modify the list later.
    WillowJ likes this.
  19. WillowJ

    WillowJ Senior Member

    Messages:
    2,935
    Likes:
    2,365
    WA, USA
    Awesome, Cort. Thanks.
  20. frenchtulip

    frenchtulip Senior Member

    Messages:
    515
    Likes:
    181
    There is another organization listed at Chase: CFSFM Support Group of DFS, Inc. (Dallas Fort Worth) Euless, TX http://www.bit.ly/sohrk7 This was found through a listing of nonprofits at cfids.org that particpated when PANDORA won. Also, the CFIDS Assn. had listed the National Fibromyalgia Research Assn. It appears to deal almost exclusively with FMS.

    Neuro Immune Disease Alliance (NIDA), which supports Dr. Daniel Peterson's Simmaron Research, emailed that they learned they are not eligible because they don't do the research themselves, but give the money to others.

    Both the IACFS/ME and the National CFIDS Foundation responded, want to actively participate and sent the requested info.

    Massachusetts C F I D S responded with the requested info and said they are very busy with an educational conference this weekend. They said if they don't make the top 10, they will try to motivate their members to support those who do. What a great attitude!

    RESCIND--Tom H. sent the requested info. But Marly S. has just talked with Tom and he doesn't want to participate in CCG because all the paperwork and so forth is to much right now.

    Dr. A. Martin Lerner CFS Foundation--Dr. L. returned the requested info. I reminded him about the need to complete the PP and sent him the link to his.

See more popular forum discussions.

Share This Page