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!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

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

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Nov 7, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    So there is only seven different ME/CFS groups which can be voted on???? and the same group cant be voted on twice????
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    ah I think I understand it all now.. Ive just read something on their site which says each charity can only be voted for once.

    and I was just checking the chase stuff out and saw written "
    4.Combine your efforts. When companies, organizations and charities are seen working together to address a worthy cause, they accomplish so much more than they could on their own." @ http://apps.facebook.com/chasecommunitygiving/for_charities?tab=view_forum

    "HOW DOES THE PROGRAM WORK?
    Chase Community Giving began November 8th, 2011 and will run through November 22nd, 2011. Based on votes received, the top charity will receive a $250,000 grant. The 2nd through 5th place charities will receive $100,000. The 6th through 100th place charities will receive $25,000."
    ........................................

    So are thinking that that is probably what we should be trying to try to get one of our groups in the top 5 and take up Chases suggestion. I can see it as a way in which we could get one of our groups in top 5.
    If we organised to use our 3 spare votes which we cant use on ours anyway.. to choose three other charities who would work with us and all vote on one of our charities (the same one which then would make it very strong) to try to get it into the top 5???

    eg Say if someone rang the "Team Sanfilippo foundation group" (its mission to find treatment for children with that terminal disorder)... being a group which is there needing money for research etc its going to under our own diplema well.. being ranked 7th and from what I can see it hasnt got much chance at all at getting into top 5 without much more help to do so. I'd think they would be quite grateful if they saw a way to be helped into that top 5.

    Them being a big group too.. they could possibly help get us quite a few votes for one of our groups too. I propose we try to team up with them (or even team up with up to 3 groups seeing we have three spare votes) and them to help us get one of our groups into top 5. If it could be arranged for us both to work together.. I really think we could get there.

    They could help get people to vote for whichever group we choose to get pushed into top 5, just by expressing they wish people to do that on the picture area.. where their lego shows up and which can be clearly seen when people click to find out what they are about. We could do the same for them and put a request for people to support them on whatever group we are asking them to vote for too (I suggest to use which ever group of ours is in the lead as it will need to gain less votes then the others to get there and obviously is most popular).

    (are I making any sense?? im bad at explaining my thoughts at times.. i truely see that if we worked with other groups who also need help, we COULD get a group in top 5 esp if we worked with a strong group who was only just going to miss out themselves otherwise)

    Is something like this currently trying to be arranged by any of our orgs in this competition?

    ......

    Ive never used facebook but are going to this time as someone used facebook on my computer :( (which then puts those trace things or whatever it is into it) so i thought what the heck, I'll do a face book account with a fake name just to vote and not tell my family I have facebook and get rid of the account afterwards so I wont have one if they ask.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    As CFSKnowledge Center - #28 is in the lead.. would they be willing to do that and see if they can team up with another group to try to get into top 5 to then get a lot more money (or even allow someone else to try to organise it), If something can be added in the picture area of the org profiles asking people to also vote for the other group if they are willing to help us? (I dont know if that picture area can be changed and added too anytime or not.. can it??).
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    432
    Raleigh, NC
    Every group slipped - some of them dramatically....if we don't pick the pace up the bottom two will probably drop out of the top 100 by tomorrow.

    CFS Groups in Top 100

    CFSKnowledgeCenter - #32
    American Association of CFS (IACFS/ME)- #45
    Wisconsin CFS - #52
    RMCFA - #53
    New Jersey - #62
    Mass - #83
    Enterovirus - #87
    taniaaust1 and Dolphin like this.
  5. helen41

    helen41 Senior Member

    Messages:
    561
    Likes:
    111
    Sleepy Hollow Canada
    The Chase Community Giving (CCG) Contest is underway, and we are excited! This is an opportunity for us all to band together and help some of our small nonprofits to possibly win between $25,000 and $250,000 each! $3,000,000 will be distributed among 100 charities. In previous Chase CCG Contests, The CFIDS Association of America, the WPI, and P.A.N.D.O.R.A. have all been winners.

    Just to quickly introduce ourselves, we are part of the ME (ME/CFS) Fundraising Group. This is an international group which was formed to look for opportunities to help ME/CFS/CFIDS nonprofits raise money and to support them during fund-raising efforts, as well as networking ME advocates, group leaders, and organizations to coordinate our efforts. The current focus is online contests sponsored by large corporations. We have a facebook group (http://on.fb.me/twyeN3).

    As you may have noticed, there was no poll to help decide a recommended list for the CCG Contest. Cort Johnson, at Phoenix Rising, produced a preliminary list based on the most active organizations, and the fundraising group has been gathering and processing information (not all the orgs were prompt to respond and some of them need help with various issues).

    Faith, from the fundraising group, sent out letters to the eligible nonprofits asking certain questions to help the community understand the orgs and decide how to vote. Cort is kindly posting these responses under his article (http://bit.ly/vwfsFU).

    One of the advisors to the fundraising group recommended not using a poll to help form the recommendations, citing various concerns such as that the broader community might not appreciate a subsection suggesting how they should vote, and that Chase might not like it. The CCG Task Force ultimately voted not to use a poll in this way. (If any group wants to vote as a block, the members of that group could organize a poll for that purpose.)

    The fundraising group is composing a list of organizations thought to be more engaged with the contest, based on the following:
    they have (or are working on producing) a profile at the CCG application,
    we think they are eligible to compete,
    they have (or are producing) a Facebook page (less important),
    they responded to us.

    Other than the obvious (eligibility), we are using these criteria as an indicator that the organization is ready and able to take an active part in promoting itself to voters and able to complete the considerable paperwork requirements for CCG (they must do grant-writing twice).

    The ME charities that have expressed interest and submitted the necessary info to Chase are listed here:
    Massachusetts CFIDS Association, Inc. Quincy, MA http://bit.ly/sJXeQ9 http://www.masscfids.org/
    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
    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 groups have been included with those who have engaged and are interested in the contest)

    Additional groups listed at Chase:
    CFIDS and Fibromyalgia Self-Help Program Palo Alto, CA http://bit.ly/kfjQuZ http://www.facebook.com/pages/CFIDS-Fibromyalgia-Self-Help-Program/363603026473?ref=ts
    Chronic Fatigue Syndrome Fibromyalgia Org. of Georgia, Inc. Kennesaw, GA http://bit.ly/kdavB3 http://www.cfog.us/
    Connecticut Chronic Fatigue and Immune Dysfunction Syndrome Association, Inc. Milford, CT http://bit.ly/uqIqF7 http://www.ct-cfids-fm.org/
    American Fibromyalgia Syndrome Association, Inc. Tucson, AZ (Promotes research, education, and advocacy for Fibromyalgia and CFS) http://bit.ly/rXNspc http://www.afsafund.org/
    CFIDS Emergency Relief Services, Inc. Northport, AL http://bit.ly/t5CPEn http://www.cfidsers.net/hx.html
    Chronic Fatigue Syndrome, Fibromyalgia & Chemical Sensitivity Wilmette, IL http://bit.ly/jAPq2Z http://www.cfccc.net/
    Fibromyalgia Coalition International Mission, KS (Provides support for persons with Fibromyalgia and CFS) http://bit.ly/sDuISF http://www.fibrocoalition.org/pages/aboutus.html
    National Chronic Fatigue Syndrome and Fibromyalgia Association Kansas City, MO http://bit.ly/kkIlau

    Smaller, less supported groups listed at Chase:
    Black Hills Chronic Fatigue CFS and Fibromyalgia Syndrome FMS Support Group Rapid City, SD http://bit.ly/miotT9
    Tacoma Gig Harbor CFIDS and Fibromyalgia Support Group Gig Harbor, WA http://bit.ly/l09xKa
    Central Virginia Chronic Fatigue Syndrome & Fibromyalgia Association, Inc. Charlottesville, VA http://bit.ly/t7QVtl
    CFSFM Support Group of DFW, Inc. (Dallas Fort Worth) Euless, TX http://www.bit.ly/sohrk7

    Doesn't want or can't take part this year (but listed at Chase):
    RESCIND, Inc. Boca Raton, FL http://bit.ly/u75QB2
    National CFIDS Foundation, Needham, MA http://bit.ly/sdn7BL
    Neuro Immune Disease Alliance, Inc. Agoura Hills, CA (Fund-raises for Dr. Daniel Peterson's Simmaron Research) http://bit.ly/kd5qCx
    Dr. A. Martin Lerner Chronic Fatigue Syndrome Foundation Beverly Hills, CA http://bit.ly/w0HfV4

    As we get status updates on these or any other orgs, we will post them at the ME (ME/CFS) Fundraising Group (http://on.fb.me/tV26Cw) and at Phoenix Rising (http://bit.ly/tBoIOW ).

    Voters should, of course, do their own due diligence to ensure organizations are eligible (again, there seems to be some confusion about this in some cases), are behaving in a sportsmanlike manner, and are organizations the voters want to support. The application is here: https://www.facebook.com/ChaseCommunityGiving?sk=app_162065369655 and the rules are here: https://apps.facebook.com/chasecommunitygiving/rules.

    We would like to ask your help in supporting ME/CFS organizations in the contest. Could you please inform your members about the contest and ask them and their family members to vote for the best positioned ME/CFS organizations? We would genuinely appreciate it.

    To vote, you must have a Facebook account, which is easy to set up if you don't already have one (www.facebook.com). Then go to: https://www.facebook.com/ChaseCommunityGiving. You must "Like" and "Allow Access" to Chase Community Giving. That means you will go unsecure to Chase Community Giving site, so they will know you are an actual person. (You may need to click the "Like" button several times throughout the program.) Click on "Chase Giving" at the left side of the Chase Community Giving page.

    To find the charities you wish to vote for, you can do a search for each charity in the Search Box at the Chase contest site or simply use the URLs provided above, which will take you to their voting pages. Each person gets 10 voteswhich must each be used for a different nonprofit.

    Votes can be cast at any time November 8th-22nd, so this is easier than a daily vote. When you vote, you can make a comment about the organization, and you can also "Share" with your friends on Facebook and/or Twitter that you have voted. These are great ways to spread the word about your support for an organization.

    We hope you will be interested in taking advantage of this opportunity to support ME/CFS nonprofits in the Chase contest. Thank you very much for any help you and the members of your organization can provide.


    Sincerely,


    Helen Watkinson
    Janelle Wiley
    Faith Wong
    Members, Board of Administrators
    ME (ME/CFS) Fundraising Group
    Dolphin and WillowJ like this.
  6. WillowJ

    WillowJ Senior Member

    Messages:
    2,905
    Likes:
    2,321
    WA, USA
    thank you, Tania. I think you are right about what this means! We had been wondering if we could band together with other charities, and I think you've answered our question. :) Thanks! :Retro smile:
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,544
    Likes:
    5,011
    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.
    WillowJ likes this.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    Thanks Cort. I really hope all those can stay in top 100.
  9. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    There is truly no such thing as ME/CFS. How can we ask for money or donations for that which does not exist?

    CFS is not terrible useful but it is an actual defined syndrome for which there are ICD diagnosis codes.

    Chase should be informed.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,619
    Sth Australia
    What's the name thing or the definition thing to do with Chase? the groups whether ME or CFS all need money.

    The orgs are using their names whether we agree on them or not.
  11. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    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.

  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,544
    Likes:
    5,011
    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.
  13. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    These are ME charities? CFS, CFIDS, CFS/ME - wow, that's generally Wessely's FSS biopsychosocial construct.

    So I would say not. And we wonder why there's no progress?


  14. SpecialK82

    SpecialK82 Senior Member

    Messages:
    876
    Likes:
    454
    USA
    I'm holding on to a couple votes for alliances also.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,544
    Likes:
    5,011
    I didn't say they were specifically ME charities. I wasn't responding to you.
    If there are ME-specific charities in this contest, let me know.
    Alternatively, perhaps there will be in a future contest if interested people get together and set one or more up.
  16. Anne

    Anne

    Messages:
    83
    Likes:
    50
    I have sent this FB message to all of my contacts. If you like, please copy it and do the same. We need to move the ME/CFS organisations up on the Leader Board.

    Dear friends,

    if you could spare a minute, please help us win up to $250,000 for ME/CFS advocacy by voting in the Chase Community Giving Facebook Contest. All it takes is a few simple clicks. Previous rounds of Chase Community Giving have resulted in over $100.000 for ME/CFS advocacy and research. Heres a new important chance for us!

    Voting begins Nov 8th and ends Nov 22nd. Each person has 10 votes but is only allowed to vote once per non-profit. So: please use your votes on the 10 ME/CFS organisations listed below. Every organisation in the Top 100 will be awarded $25,000.

    Heres how to do it:

    1. Go to the Chase Community Giving's Facebook page and click Like (if you havent done so already in previous rounds) https://apps.facebook.com/chasecommunitygiving/

    2. Use the links below and click on the "Vote" button for each organisation. When a Permission button appears, click Allow.

    3. Spread this information to your friends and family and encourage everyone to vote.

    Direct URLs for 10 participating ME/CFS organisations:

    IACFSME, called AACFS in Chase Community Giving: https://apps.facebook.com/chasecomm...r-chronic-fatigue-syndrome-inc?src=vote_share

    CFSKnowledgeCenter: https://apps.facebook.com/chasecomm.../943443312-cfsknowledgecenter-inc?src=twitter

    Rocky Mountain CFS /ME and FM Association (Rocky Mountain CFS Association Inc. in Chase): https://apps.facebook.com/chasecomm...ountain-cfs-me-and-fm-association?src=twitter

    Wisconsin CFS Association: https://apps.facebook.com/chasecommunitygiving/charities/391614649-wi-cfs-assn?src=twitter

    New Jersey CFS Association: https://apps.facebook.com/chasecomm...-fatigue-syndrome-association-inc?src=twitter

    CFIDS and Fibromyalgia Self Help Program: https://apps.facebook.com/chasecomm...nd-fibromyalgia-self-help-program?src=twitter

    Connecticut CFIDS Foundation:
    https://apps.facebook.com/chasecomm...mmune-dysfnctn-syndrome-assoc-inc?src=twitter

    MASSACHUSETTS C F I D S ASSOCIATION INC: https://apps.facebook.com/chasecomm...husetts-c-f-i-d-s-association-inc?src=twitter

    Chronic Fatigue Syndrome Fibromyalgia Org of Georgia: https://apps.facebook.com/chasecomm...e-fibromyalgia-org-of-georgia-inc?src=twitter

    Enterovirus Foundation: https://apps.facebook.com/chasecomm...513934-enterovirus-foundation-inc?src=twitter

    Thank you so much!
    Dolphin likes this.
  17. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    Dolphin, this is what you posted and this is what I responded to:
    Originally Posted by Dolphin
    Originally Posted by helen41

    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

    ---

    I would support ME charities. I suppose those with CFS would support CFS charities. But we never know when CFS charities call
    themselves ME charities. I think it's fraudulent but this is the shell game that they play and we are told to tolerate and embrace! and which
    they are now trying to make official via changes to ICD. No one really has ME/CFS as it does not
    officially exist as a diagnosis. Can we ask for money for something which does not officially exist? Scientifically it does not
    seem acceptable, but, well, standards are pretty low.

    Do remember that this is exactly what Wessely does, and we hand it to him. He studies chronic fatigue and pretends to be studying ME.
    Whatever the gig, this is not in patients best interests.

  18. Dolphin

    Dolphin Senior Member

    Messages:
    6,544
    Likes:
    5,011
    Ok, I see what happened. I replied to what another poster said and their quote had used that description.
  19. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    I saw that you posted it but was actually from someone else. Sorry I did not notice this.

  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,544
    Likes:
    5,011
    No problem

See more popular forum discussions.

Share This Page