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Plea from Dr Bell to donate to the WPI

Discussion in 'Action Alerts and Advocacy' started by fred, May 2, 2010.

  1. Andrew

    Andrew Senior Member

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    Flybro, on my last contribution is says "Whittemore Peterson Institute For Neuro-Immune Disease
    dblades@wingfieldnevada.com. "

    But I submitted it by pushing on the button a the WPI site.
     
  2. Frickly

    Frickly Senior Member

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    Flybro, I don't know who's email address that is it but does not familiar. Please use the web address below if you would like to contribute. If you need to contact someone with a question about donations, please use the web address below.

    You can donate directly through the WPI website at http://wpinstitute.org/

    Or pick anyone of the following causes on facebook. All funds donated through these causes go directly to support WPI. You can also easily set up a monthly donation.

    XMRV Global Action http://www.causes.com/causes/421525

    Cure 4 ME http://www.causes.com/causes/399439?m=18eac145

    Blue Ribbon Campaign for ME/CFShttp://www.causes.com/causes/275904?m=18eac145
     
  3. flybro

    flybro Senior Member

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    pluto
    Phew Andrew thanks, I think i weent thru the WPI site too

    Frickly, it was only when i got the paypal thingy in my email that i noticed where it went.

    and its the same as Andrews, so I'm sure it must be right.

    But if anyone knows soemthing differnt and dblades@wingfieldnevada.com is not the right recipient SHOUT.

    I asked becasue I expected it to have a more WPI like email addi on my patpal recpt.
     
  4. citybug

    citybug Senior Member

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    I gave $10 which is all I could afford this month. When I sent out my letter to most of my email contacts I was very nervous, but now I have the pleasant sensation that ten more people could be donating $10 because of it. I spoke to one friend who said I shouldn't be worried at all about the mailing. She gets them for other diseases from other friends. She was quite happy to read the information.
    I liked including the NCI page link since it so official and describes the WPI contribution, and the nevada newsmakers interview on youtube is still my favorite video.
     
  5. Frickly

    Frickly Senior Member

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    Thanks Kdp!

    $1662.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  6. flybro

    flybro Senior Member

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    pluto
    $20 from us
     
  7. Dolphin

    Dolphin Senior Member

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    Thanks for your thoughtful post.

    I have a good idea who has donated in my country over the years. Maybe not so much in the last couple of years but more in the past. I don't believe there is a problem with people giving to research money they can't afford.
    One can not say the same thing with what people spend on treatments of one sort or another, many very speculative or only likely to give short-term or symptomatic relief.

    It should not be forgotten that surveys show nearly everyone in the countries I know do give to charity.

    I know in my country, in any one year, over 95%, probably closer to 99% of the people with ME/CFS are not supporting ME/CFS research.
    Before we started collecting money, there might have been a handful of the people in the country giving to research (in other countries).
    These people are clearly supporting some causes but not ME/CFS research.

    People were waiting around, giving out that nothing was being done not recognising that they have the power to make a difference.

    While some people may only have basic government disability payments, a reasonable percentage can be on insurance type payments where you get 2/3 (say) of their former salary. And of course, these people dont have some costs associated with working.

    But what I want is people realising they can make a difference raising money. Donating themselves in only one way of doing this. There can be ways they can fundraise and/or encourage family members to fundraise or donate.

    Some parents, spouses/partners, siblings and others can be willing to support. And if one gets one of these people to give a monthly donation, it can add up to a LOT longer term.

    Private money can also lead to releasing some other sorts of money or resources, either at the same time as the study or the study providing pilot data which allows the researchers to apply for bigger grants.
    This hasnt worked so well in the UK where there seems to be a bias but certainly in the US, smaller studies have gone on to release more dollars from taxpayer-sources.

    One needs also to support existing researchers in a field or they can leave. In Ireland, there arent really researchers interested so its not so easy to access any sorts of government funds (i.e. just re-iterating the point that one needs to keep researchers in the field).
     
  8. Kati

    Kati Patient in training

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    After watching Dr Unger's presentation at the CFSAC today, I just donated another 20$ to WPI because I am petrified that the CDC CFS program while reclassified in the high consequence pathogen division, they are still so unclear about the disease cohort that they started looking at metabolic syndrome.

    This is scary, people. I wonder how long it will take them to find an new "leader" for the CFS program, and who this person will be.
     
  9. fred

    fred The game is afoot

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    Some British chap called Wessely has applied, apparently.

    [​IMG]
     
  10. Frickly

    Frickly Senior Member

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    Thanks Flybro and Kati!

    $1702.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  11. frenchtulip

    frenchtulip Senior Member

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    Sent mine in

    I finally sent in my $10.00 to the WPI. Also made a donation to the CFIDS ASSN. for research. Did my advocacy letters using the CFIDS ASSN. letter templates. Hope to make a Sock-It-To-M.E./CFS sock tonight. I am celebrating ME/CFS Awareness Day.
     
  12. Hope123

    Hope123 Senior Member

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    If they are able to, people should try to donate to the WPI and the CAA or other small non-profits/ foundations interested in CFS research. The reason is, speaking as as a past participant in academia, in order to get NIH and other big government grants that help launch and sustain big research projects, researchers need preliminary studies to show goverments/ big pharma/ etc. "Hey! This idea has merit and is important and you should fund it." Without preliminary evidence, the bigger funders are usually not attracted.

    Right now, a common rationale for not funding more CFS research is that "there isn't enough preliminary data to do a larger study looking at abnormal biomarker A,B,C, etc." But if researchers could put forth interesting preliminary results, they are more likely to get NIH funding. In fact, the NIH funding applications have an area entitled "Preliminary Results" where researchers are supposed to justify why their project deserves funding.

    It's always been odd to me that the gov't doesn't fund more preliminary research but money actually is tight overall at NIH. (Side rant: US spends 50% of budget on defense.) For example, only 15-20% of all submitted projects get funded by NIH. And even putting in an application requires months of preparation. This is partly why the US is actually losing physicians to the clinical world who might make great researchers. Money-wise and dependability-wise, research doesn't pay for most physicians.
     
  13. Frickly

    Frickly Senior Member

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    Thanks frenchtulip!

    I hope everyone checks out "Sock it to ME/CFS" it's a great idea and launches tomorow!

    $1712.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  14. Frickly

    Frickly Senior Member

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    Thanks You!

    Someone has donated $1000.00 in response to Dr. Bell's letter and this thread! This person would like to remain anonymous. Thank YOU! :D

    $2712.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  15. shrewsbury

    shrewsbury member

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    woowho

    thank you everyone
     
  16. starryeyes

    starryeyes Senior Member

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    That's awesome Shrewsbury! Thanks so much for keeping track. We have such a wonderfully responsible, caring and committed community here. I'm very proud to be a part of it.

    :victory::sleepy::In bed::victory::hug::D:wheelchair:​
     
  17. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    25 frog skins sent earlier today
     
  18. citybug

    citybug Senior Member

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    Wow. Thank you anonymous. That takes us over $3000 for this month so far, and the monthly contributions are over 3000 a year ($2160 for eight months this year)!!
     
  19. Frickly

    Frickly Senior Member

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    Thank YOU!

    We have another anonymous donation for $300! Thank you so much! :D

    $3,012.00 Total In One Time Donations!
    $270.00 Total In Recurring Monthly Donations!

    These are only the numbers I could add up as some did not state how much they will be donating.
    :D:D:victory::victory:
     
  20. Jerry S

    Jerry S Senior Member

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    What starry said! Woo Hooooooo!
     

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