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!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Money for CFS research via Pepsi Refresh project

Discussion in 'Action Alerts and Advocacy' started by beesknees, Mar 14, 2010.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,807
    Likes:
    5,875
    I was thinking more generally if a fund is set up (as part of Phoenix Rising?) as a non-profit. I have donated to Phoenix Rising before but it would put me off donating if that was what money was going to be used for. I thought the competition might only be for non-profits - if other ways to spend the money can be raised, that's interesting. The US is probably a bit different to other developed countries where governments generally provide pretty good social security safety nets.
     
  2. Lelvina

    Lelvina ex-Bookworm

    Messages:
    57
    Likes:
    2
    Ooooh. Those were just my personal idea for the Pepsi Grant, totally not what PR money would be used for I assume. Sorry if I didn't make that clear.

    Oh ya, totally agree with the last part :/ One of the ideas I looked at (on the Pepsi site) is a group that puts together food for impoverished kids to eat over the weekend. I wish we had a social safety net.

    The competition seems to be open to 3 groups -- indiviuduals, non-profits, & for profit companies making less than $25m US Dollars a year (I think). The top voted ones seem to be all be related to improving communities -- maybe that's all I looked at, though. Volleyball clinics for communities, charity gardens, an online workshop to teach people about relationships, helping young men with Prom expenses, putting more books in a school library...





    FAQs
    Also:
     
  3. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Ok lelvina we'll wait it out till next month. I think we can win this. I personally can reach thousands of persons via this forum, via the action mailing list, via facebook and via other forums (international). So it's doable. One question is WPI a non-profit organisation?
     
  4. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    I think this is a great idea, the forum really could use some funding to expand its activities, and why not help people who have CFS and are in dire straits? Who else is going to help them? We have people here living out of their cars, on friends' couches, some in tents. Maybe some type of indirect help for those people could go a long way, such as a network of people who look out for the most desperate, a crisis phone line, something like that. There are all types of ways to expand the forum to help the CFS community, and Cort is making the forum a nonprofit so it can qualify for exactly this type of funding. I know of no other organization out there directly supporting CFS patients, everything is focused on research and advocacy. Or treatments few can afford. Maybe eventually helping some patients pay for treatments will also be a useful charity project.

    I don't think this type of program by Pepsi is intended to fund already well supported operations like CAA or WPI. Particularly given that WPI has still $3million in funds promised. This is more for a seriously unmet need. CFS patients qualify as a group with major unmet needs. My view anyway.
     
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,807
    Likes:
    5,875
    There is/was a group called something like CFIDSers.

    ETA: http://cfidsers.com/
    I read a couple of months back of a poster on the ProHealth forum who had already done a lot of the paper work regarding having a non-profit set up in the US to support people pay for supplements and/or other treatments (can't remember the details)
    My approach to help people is to ensure they get treated the same as everyone else/get what they are entitled to. In countries with reasonable social support systems, that’s quite a lot/enough to survive. In the US, your safety net isn't so good.
     
  6. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    I just signed up and voted, which can be done wherever in the world you live. Ten votes every day, and the top idea for the $250,000 is for Spinal Muscular Atrophy research..

    This is something that is feasible, free and fun.

    For me, the priorities would be
    1/. Housing for ME/CFS homeless
    2/. Medical care for the same
    3/. Phoenix Forum
    4/. XMRV research

    I am going for immediate need here. I'm in England, where my rent is paid, and if I am careful, I can afford my bills and food. Not enough to run a car, but then I haven't got the energy to go anywhere (except virtually) and I don't feel safe to drive anyway. Basic medical care and drugs are free, as is dental care. I hate the fact there are sick people in the US living out of cars and in tents. That really is not civilised.

    Go for it, you Americans! Seems like you can pitch for more than one award..
     
  7. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Bump. Some more words because....
     
  8. beesknees

    beesknees Senior Member

    Messages:
    116
    Likes:
    0
    Well said, Jace. This is absolutely doable. As well as an exciting way to rais BIG bucks for our cause. Although, we are still waiting for someone to submit an application. Isn't Cort trying to set up a nonprofit? He could fill it out to help set up a nonprofit and run it for say a year. I'm sure all of us would vote for that.
     
  9. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    I've send a mail to Marly Silverman to have the NEI center in the Pepsi contest. You guys can add another cause for april if you want too.
     
  10. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Hi Frank,
    I am glad to see that you are spreading the word on this. Kudos to you! I hope that other CFS-ME-FM causes will do the same. We are already there... just waiting for tomorrow to process the application and then the upload on May 1 if our application is successful. From May 2-May 31 we then have 31 days for individuals in our community to vote on it.
    We will need your help and the others to ensure everyone votes for NPOs that are helping our overall causes.


    Marly
    In Good Health and In Beauty,
    Marly "Marla" C. Silverman
    Founder
    P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
     
  11. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Thanks Frank! I think NEI is an excellent cause.
     
  12. frenchtulip

    frenchtulip Senior Member

    Messages:
    539
    Likes:
    268
    May 12th Awareness Day

    May 12th is CFS Awareness Day. May would be a good month for us to start voting on one designated CFS-related cause. If we all stick together and vote for the one CFS-related cause each month, we could build up some impressive totals.

    The NEI sounds like a good cause for May. Regional centers are desperately needed.

    Why not contact the CFIDS Association and see if they would include the Pepsi Refresh project in their e-newsletter. Perhaps they would also put it on Facebook. Voting would be a doable activity for many of us.
     
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,807
    Likes:
    5,875
    Good news.
    Note this is PANDORA it would appear.
     
  14. frenchtulip

    frenchtulip Senior Member

    Messages:
    539
    Likes:
    268
    Project requirements

    I just checked the Pepsi site and saw this in the frequently asked questions:

    What kind of ideas qualify?

    We are looking for ideas from individuals, non-profits and pro-social businesses that can make a positive impact in the community. Ideas should be feasible and completed 12 months from the date you receive the first funds.
    -----------------

    I guess we are limited to CFS projects that can be completed within 12 months from the date of receiving the first funds.
     
  15. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
  16. frenchtulip

    frenchtulip Senior Member

    Messages:
    539
    Likes:
    268
    Thanks

    Thanks, Frank.
     
  17. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    I haven't heard from Marly, and the NEI is not in the list on the pepsi website. So other ideas for ME/CFS projects that we could submit are welcome.
     
  18. HopingSince88

    HopingSince88 Senior Member

    Messages:
    335
    Likes:
    5
    Maine
    How about Creekfeet's "Sock It To Me" campaign? Grant money to increase awareness of CFS? Help fund the website creation, help pay for the sock display to be shipped and installed etc...
     
  19. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Ok hoping, if someone in the US could set it up, that'll be great.
     
  20. beesknees

    beesknees Senior Member

    Messages:
    116
    Likes:
    0
    I also like KnightofZERO's "adopt a sequence" idea. Or just paying for people's xmrv test. I know I'd love to have the test done and many others. Basically, most of us will have to wait until its covered by insurance which I'm guessing could easily be a year or two before that happens. On the Pepsi form we could ask for it to be used to help pay for a test for a potentially transmissited disease that is not covered by insurance. I would probably vote for that if I never heard of the disease. Just a thought.
     

See more popular forum discussions.

Share This Page