Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Contingency Pledges

Discussion in 'Action Alerts and Advocacy' started by justinreilly, Jan 1, 2012.

  1. justinreilly

    justinreilly Senior Member

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    Contingency Pledges (for name change to ME, etc.)

    Ever feel frustrated that the government and our ME organizations aren't doing the things you want? Well, we can do something about it! Alone we have limited influence, but together, with our pledged donations, however small, we can get them to change!

    I have started a Wiki thread (here on PR) for anyone who wants to make a contingency pledge. A contingency pledge is a pledge of a donation to research (or other worthy cause) contingent on an organization taking some action you want. It's a way to make your donations go much further and do more good for everyone by improving our organizations (in addition to supporting them financially).

    Best of all, you don't give any money until the organization changes the way YOU want! We make a powerful statement by putting our money where our mouth is when calling for change. And either the org changes the way you want and great research gets funded or you never part with any money. There's no downside. : )

    For example, I have pledged $12K for CDC to change the name of the disease ME (including $5K for ICD 10CM). I doubt this will happen any time soon, in which case this pledge doesn't affect me (I don't have to shell out any money). However, if many patients get together here and in other ways and very loudly demand that the name be changed, this will increase the chance that CDC will change it at some point. If the name changes I will have to scrounge and eat ramen for the rest of my life :D but I will do so very happily knowing that we have a proper name for our disease, doctors will take us more seriously and that I have donated a lot to great research! A real win-win for us all.


    The discussion is on this thread:
    http://forums.phoenixrising.me/show...ld-I-donate-to&p=230108&viewfull=1#post230108

    You can add your pledge to the wiki thread here:
    http://forums.phoenixrising.me/showthread.php?15470-Pledges&p=230364#post230364
     
    *GG* likes this.
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    Thanks, sounds like a good idea.

    GG
     
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  3. floydguy

    floydguy Senior Member

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    Maybe it's worth polite letters to big donors like the Hutchins Family Trust? When people are giving in excess of $1MM people stand up and take notice and go out of their way to make them happy.
     
  4. justinreilly

    justinreilly Senior Member

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    thanks ggingues.

    floydguy, Yes, I will write a polite letter to the Hutchins Family Trust and CFI. I encourage everyone to also.

    I don't want anyone to feel like I am trying to be their boss, and dictate what they can say with money. That's not the mindset I have. I realize that these contributions are chump change in the scheme of things; but it is the very best I can do. I'm stretching. I'm trying to put my money where my mouth is; I'm asking people to do what I feel is best for us all, so I feel it would be good to pitch in for the cause too if they are big enough to consider my/patients' opinions and take the effort to make a change.
     
  5. floydguy

    floydguy Senior Member

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    I think what you're doing is great. I briefly met your pop in NYC by the way!
     
    justinreilly likes this.
  6. justinreilly

    justinreilly Senior Member

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    Oh, great! My folks are real characters! I am so glad they went. It made a noticeable positive difference in their attitude toward me and ME.

    Did you enjoy the show too? I am going to get the DVD. Excited to meet Dr. E in a couple of days!
     
  7. floydguy

    floydguy Senior Member

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    I was definitely glad that I went. I was hoping for a bit more "gossip" behind the scenes. I really liked Erich Schadts presentation. I can't wait to hear your visit with Dr. E (no pressure to report :)
     
  8. justinreilly

    justinreilly Senior Member

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    Off-topic: my Mom told me she met Maddie Todd there too and "she goes on this web site called Phoenix Rising that she likes, do you know about it?" :D
     
  9. gregf

    gregf Senior Member

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    I am increasing my pledge to $1200 per year.

    Just to be clear, this is to encourage organisations and forum members here, to use the name M.E.
     
    justinreilly likes this.

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