1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Support the Whittemore Peterson Institute

Discussion in 'Action Alerts and Advocacy' started by markmc2000, Oct 31, 2009.

  1. Dolphin

    Dolphin Senior Member

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    Good point.
    And certainly in Ireland, if one wants it, a local media outlet will often cover a fund-raising event in one shape or form. So the awareness-raising doesn't simply have to be those at the fund-raising event.

    Well done and thanks to your daughter from me.
     
  2. ANGELONDUTY

    ANGELONDUTY

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    Hello all....
    Great post mark.........yeh........... Wpi !

    ' we...must '...stand as a group -- to ' serve ' ---- " the truth " ...& .to completely ...contribute in any way we can ! !
    We can share so ' we too ' ..." shall overcome " ! ........ " the truth, will prevail! "

    " send $ $ $ to wpi ! They are the ' only ones ' (because of the whittmore familys' sick daughter) are ** private **

    i will be sharing more...but having hard time rt now.

    But....i did want to report to this group, that i am----as of a few months ago, **** xmvr +p dna / neg - rna (?)...... .
    (of-couse...being very sick...for many yrs. )

    so i am ' all for sharing '.... I have been researching .." this stuff "...now, for many years...........& " there are.....so ...so...many ' layers '....of ' this story "........(fyi -- ref: To ' osler's web ' )
    reg: " the real truth "

    but.....i have " great faith ! " ..........like spoken on here, ' in numbers ' we can change things..! !

    Blessing's to all...........
    Angelonduty
     
  3. Dolphin

    Dolphin Senior Member

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    Thanks for what you've given and anything you give in the future - it is like a gift to us all.
     
  4. bakercape

    bakercape Senior Member

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    I sent

    a donation 2 days ago. I figure since I'm fortunate enough to still be able to work I'll cut out the dunkin donuts coffee every day and send the savings to WPI this year.

    Maybe if everyone that can scrimp some money up this year sends it to them we can make a real difference. I know not everyone can.:(
     
  5. markmc20001

    markmc20001 Guest

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    yippeeee :thumbsup:

    I often see the other charities where most of the money is wasted, or goes to exorbitant overhead fees. I figure WPI will use funds effectivily and even benefit me a bit. Kind of a WIN-WIN, the way I see it!


    CFS desperately needs research money(From what I can tell I haven't seen any to sepak of), just imagine if all the people on this site didn't waste so much money seeing private DOCS, and the money was just donated for well designed clinical trials and CFS research? CFS would be history!!

    Right now, the only knowledge we discover(seems to me) is funded by really sick patients in doctors offcies in an ineffective and costly way. That really ay only benefit the one person that laid out a ton of cash. I'd like to see more well designed studies and research, and WPI seems to have the best intentions, and a good start.

    hang in there. :thumbsup:
     
  6. Dolphin

    Dolphin Senior Member

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    It certainly would. Some of the figures that might be raised can be seen at: http://www.pocketmoneyfund.org/index.php - and some people could give more than the figures mentioned.

    Thanks for your gift on behalf of everyone affected and our loved ones. (And it should the wider society money in the long run).
     
  7. Dolphin

    Dolphin Senior Member

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    Exactly. I try to raise money for the cause and it is amazing the number of people who don't give anything in any one year (or even ever). They might say they have no money but if you look at how much many of them spend, they clearly do have some money. Personally I'd be happy if people gave 1% of what they spent on treatments (of course more would be better). With so many people affected, we won't have had to face so much psychobabble now if it had been done in the past.
     
  8. johnnylove

    johnnylove Guest

    I attempted to due that last year for Fibromyalgia/CFS. I alerted area newspapers with a press release from the NFA and asking the mayors of those cities to let it be known that MAY 12TH is Internatonal Fibromyalgia Day. Unfortunately, I got really ill around that time and was frustrated I couldn't do more at the time. One of the mayors beautifully had typewritten the press release, signed it, and stamped it with the city's seal, with a comment from the mayor. I tried to start a group at some online group (I'm very sick right now so excuse my forgetfulness), but the illness hit me again and with cancer. By all means, don't just email letters but send snail mail letters with follow-up calls. See if you can set up a brief meeting with your elected official. Even the governor of CT takes office visits. The squeaky wheel gets the oil. Never forget that.
     
  9. johnnylove

    johnnylove Guest

    There is also the I Give where everytime you search the web, money goes to the WPI If you want to buy something online, at IGive there are special offers on things that you may need wherer a higher percentage of the donation to WPI is granted by the company. Put IGive on your toolbar and it'll be there when you need it.
     
  10. Robin

    Robin Guest

    IGIVE FAQ -- free fundraising for the WPI

    Q. What is IGIVE?

    A. IGive is a web charity portal. Through agreements with online vendors (like Amazon, Homedepot.com, Buy.com), IGive facilitates charitable giving by arranging a small percentage per sale donation to a cause of your choice. IGive has also a search engine, ISearchIGive, that raises $0.02 per search.

    Q. Is it legitimate?

    A. Yes. Charities mention receiving checks from them. IGive has been vetted by journalists, and have overwhelmingly positive reviews.

    The best part of this type of fundraising is that it is free for both the donor AND recipient. Nonprofits often have to spend a lot of money to raise money, but this way all they have to do is get a check.

    Q. OK, how about the search engine?

    A. You can use the search engine to raise $.02/search. That may not seem like much but consider:

    • An individual doing 5 searches a day donates $36.50/year
    • 100 people doing 5 searches a day? $3,650/year
    • 500 people doing 5 searches a day? $18,250/year
    • An individual doing 10 searches a day donates $73/year
    • 100 people doing 10 searches a day? $7,300/year
    • 500 people doing 10 searches a day? $36,500/year

    But remember you can do as much or as little as you like. If you don't have money to contribute, this is a great way to do it.

    To fundraise for the WPI go here. You can bookmark the link or add it to your browser's bookmark bar to keep it handy.

    There is no need to register with IGive to raise money using their search engine. However, if you register, IGive will keep track of your searches (and purchases, but we'll get to that later.) You can register here.

    After registering, you'll be prompted to specify a cause. You can always change it later. There will be a link on the main page where you can check your stats (and cause stats). Note that ISearchIGive tallies searches at the end of the day so there may be a delay.

    [​IMG]

    Q. Are there limits to how many searches I can do?

    A. Yes, there are limits to the quantity and types of searches. Here are the guidelines:

    [​IMG]

    Q. How does the shopping part work?

    A. It's very easy. The next time you are doing online shopping, go to www.igive.com first. If you haven't registered, do so. Then, simply run a search for the site you will be shopping on. If they have an agreement with IGive, a link will be provided along with the percentage of how much of the total purchase will be submitted to the cause. USE THE LINK TO GET THE DONATION.

    Within 30 days, the donation will show on your stat page.

    Check out IGive's FAQ here.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Unfortunately they lowered their per search donation to 1 cent. I still use it though.
    I really like their shopping portal and personally it has generated some nice donations.
     
  12. Koan

    Koan Be the change.

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    I wish I could use the toolbar but it's not compatible with Mac. I did not know there were so many restrictions on searches, either. Unfortunately, I don't shop but I'll use the search as much as I can.
     
  13. Robin

    Robin Guest

    I know Justin. I was so mad!! :Retro mad:

    I need to update my figures in the above post. It's on my long "to do list". :tear:

    Thanks, Koan!
     
  14. michal

    michal

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    Hi,
    I also would like to give a donation to WPI and maybe also other CFS organisation. I asked my firends and family about the supporting of CFS research and they sent me aroud 1000 EUR and there are still some friends who want to support me but they prefere to send it directly to the organisation. I checked WPI and they want to be pay with PayPal. My question is, how much do you have to pay for bank charges if you sent money from Europe. The most of the people want to send just maybe 5 EUR and if you have to pay bank charges next 5 EUR - its not too efficient.So if someone knows it - just let me know.
    Thank you
     
  15. xanadu

    xanadu

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    There are no bank charges with PayPal for gifts, and only a small handling fee for commercial transactions. Your friends can say they want to pay $10 or 5, and and PayPal sorts the currency conversion out. It might be best if your friends give small donations to one person, who then makes a single PayPal transfer to WPI.
     
  16. Dolphin

    Dolphin Senior Member

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    FWIW
    Ye, Ive got a lot of stuff off different ME/CFS charities over the years through PayPal in different currencies to my credit card e.g. DVDs.
    As I recall, the person sending the money shouldnt have anything extra except what the credit company charges for foreign transactions (I think ours is 2.75%). Or 14c for each $5.

    Michal, well done for collecting all that money. :Retro smile:
     
  17. Frank

    Frank Senior Member

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  18. citybug

    citybug Senior Member

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    Here's the letter I'm finally going to circulate. I figure I won't feel so bad doing it for May 12. I had the photo pasted in from http://www.wpinstitute.org/news/news_cmm.html under Center for Molecular Medicine :


    May 12 is CFS Awareness Day. Please circulate for someone you know.

    A new retrovirus XMRV is discovered in CFS by the Whittemore Peterson Institute, published in research journal Science in October 2009.

    Do you know someone with CFS, Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome? Please give to the Whittemore Peterson Institute to pursue this research.

    We need help now. Please donate a dollar or more for anyone you know and pass this on.

    http://www.wpinstitute.org/index.html Donate button

    Donate by shopping or searching, join http://www.igive.com/welcome/warmwelcome.cfm?c=53664

    Whittemore Peterson Institute

    The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

    We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

    This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

    Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.

    Clinical Trials to start in fall 2010
    New treatment strategies for immune modulation and antiviral strategies have been successfully developed for chronic inflammatory disease over the last decade. Each of these drugs has had to undergo extensive investigation before obtaining approval for general use.

    January 31, 2010: Dr. Mikovits XMRV Seminar and Q&A by ProHealth and HHV-6 Foundation now available as video. http://www.prohealth.com//library/showArticle.cfm?libid=15107

    Center for Molecular Medicine


    The University of Nevada School of Medicine, Center for Molecular Medicine, now under construction, is the future home of the Whittemore Peterson Institute. This state-of-the-art facility on the northern edge of the Reno campus is scheduled to open in 2010. In addition to the Institute the 100,000 square foot Center will house portions of several university departments and include research laboratories, clinical space, and a vivarium.



    Published materials circulated by patients.
     
  19. citybug

    citybug Senior Member

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    This thread has many of the appropriations committee members listed at the beginning and links for contacting representatives. #1 through 11 and #20. We need the same things as last fall.
     

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