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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Columbia U{Dr. Lipkin} Donor Survey -- Use it to Promote ME/CFS

Discussion in 'Fundraising' started by beaker, Jul 18, 2014.

  1. beaker

    beaker CFS/ME 1986

    Messages:
    430
    Likes:
    662
    USA
    B/c I donated to Dr. Lipkin's research, I received an email from Columbia U asking if I would fill out a survey regarding my experience as a donor. See below.
    I almost deleted it. But I clicked. It is mostly rating experience BUT there are several opportunities to write what I most want out of my donation or donation experience. I used every space available to ( formatted in a way that answered the particular question appropriately) promote Dr. Lipkins research, ME/CFS research in general. {Pointed out that Stanford had set up a clinic and research group }, and ask them to fundraise for his research and fund him out of the CU general donations. I also suggested education for their physicians.
    I used words like serious, devastating, life altering,neglected etc.....I'm sure you can come up with your own descriptors. I said I don't want recognition for my donations, I want results !
    I strongly suggest that if you get this survey, please take the few minutes it takes to do the same.
    Maybe it will do nothing. But maybe it will make someone there think twice and check it out.
    Who knows ? -- crazy optimist that I am !
    Peace.

     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,774
    Likes:
    8,157
    UK
    You did a better job than I did, @beaker! Though I did suggest, when they asked me what they could do to encourage me to donate more, that they could promote Dr Lipkin's ME/CFS project.
     
    Little Bluestem, beaker and catly like this.
  3. catly

    catly Senior Member

    Messages:
    187
    Likes:
    368
    outside of NYC
    I used every free text field to comment on the ME/CFS work by Lipkin and Hornig and encouraged them to do more research, education of medical students, staff physicians and allied healthcare providers regarding this devistating and under served disease.
     
  4. maryb

    maryb iherb code TAK122

    Messages:
    2,924
    Likes:
    2,061
    UK
    I probably could have said more, brain mushed!! wish I'd read this before I completed it....
     
    beaker and Little Bluestem like this.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,118
    Likes:
    963
    Concord, NH
    Just breaking this up to make it easier to read.

    GG
     

See more popular forum discussions.

Share This Page