1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Support the Whittemore Peterson Institute

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

  1. markmc2000

    markmc2000 Guest

    Hi folks,

    Lets all show WPI a little gratitude in the form of donations to give them support financially and motivational wise to solve this now.

    Instead of waiting for others to do something like the government, lets ALL take a little initiative and follow the WPI's lead in getting it done! Stop waiting on somebody else to do it. Everybody chip in for our own good!

    The stop passing the buck, and lets all do a little to donate a few bucks to WPI!

    credit card or paypal online
    http://www.wpinstitute.org/

    If money is not an option, political pressure will help too. THe people who can, maybe spend a little energy and just send a few thoughts to your local politicians, the white house, or Kathleen sebielius (the head of health and human services who is over the CFSAC commitee)


    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500

    202-456-1111


    Email Call your senators http://www.senate.gov/

    Email Call your congressman http://www.congress.org/

    Email/call/write : KATHLEEN SEBELIUS
    The U.S. Department of Health and Human Services
    200 Independence Avenue, S.W.
    Washington, D.C. 20201
    Toll Free: 1-877-696-6775

    Mark:D
  2. Aftermath

    Aftermath Guest

    Excellent Idea

    Excellent idea.

    I'm making this thread a sticky at the top...
  3. markmc2000

    markmc2000 Guest

    Right ON!

    Right On Aftermath!

    If money is not an option, political pressure will help too. THe people who can, maybe spend a little energy and just send a few thoughts to your local politicians, the white house, or Kathleen sebielius (the head of health and human services who is over the CFSAC commitee)


    The White House
    1600 Pennsylvania Avenue NW
    Washington, DC 20500

    202-456-1111


    Email Call your senators http://www.senate.gov/

    Email Call your congressman http://www.congress.org/

    Email/call/write : KATHLEEN SEBELIUS
    The U.S. Department of Health and Human Services
    200 Independence Avenue, S.W.
    Washington, D.C. 20201
    Toll Free: 1-877-696-6775
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    Snail mail works for me :)

    Whittemore Peterson Institute
    6600 N. Wingfield Parkway
    Sparks, NV 89436
  5. anne

    anne Guest

    Wonderful. Thank you.
  6. Samuel

    Samuel Bedbound with NO DOCTOR

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    I cannot add to the above. It is essential to support WPI.
  7. hvs

    hvs Senior Member

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    ......Done........
  8. citybug

    citybug Senior Member

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    NY
    I'd like the addresses as a separate thread, sticky: Federal addresses to contact, so I can find it again! and we can add more.
    I also wish there was a professional letter to circulate for donations for WPI. I feel bad hitting up my friends, but I could do it if I was forwarding something.
  9. calzy

    calzy Senior Member

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    Naples Florida
    wpi

    I donated the night before their big news came out! Karma at work.:D
  10. jewel

    jewel Senior Member

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    Agreed. Done.

    I did do this. Last week. I'm also aware that many people cannot afford to donate at this time, due to un- or under- employment related to their illness, or to the dire economy, or both. Finances can be a struggle. I'm hoping that those who can donate, will do so. Cheers, J.
  11. citybug

    citybug Senior Member

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    Right On - more contacts

    I added WPI to the igive list. Anyone know other search/donation engines? You can make your own link. To join http://www.iSearchiGive.com/WhittemorePeterson

    also I was looking up Senate and House Committees. CFIDS of America already has list
    http://www.cfids.org/advocacy/congress-committees.asp Once you write a letter you can send to a few people.

    Here are 3 committees.
    House of Representatives
    Committee on Appropriations
    Subcommittee on Labor, Health and Human Services, Education, and Related AgenciesMembers

    MAJORITY
    Chair: David R. Obey (WI)Dave Obey (WI), Chair

    Nita M. Lowey (NY)
    Rosa L. DeLauro (CT)
    Jesse L. Jackson, Jr. (IL)
    Patrick J. Kennedy (RI)
    Lucille Roybal-Allard (CA)
    Barbara Lee (CA)
    Michael Honda (CA)
    Betty McCollum (MN)
    Tim Ryan (OH)
    James P. Moran (VA)

    MINORITY

    Ranking Member:
    Todd Tiahrt (KS)
    Dennis R. Rehberg (MT)
    Rodney Alexander (LA)
    Jo Bonner (AL)
    Tom Cole (OK)
    Jerry Lewis (CA), Ex Officio



    Congress > Committees
    Senate Committee on Health, Education, Labor, and Pensions
    This committee has 23 members.

    Chairman
    Sen. Thomas Harkin [D-IA]
    Ranking Member
    Sen. Michael Enzi [R-WY]

    Sen. Lamar Alexander [R-TN]\
    Sen. Michael Bennet [D-CO]

    Sen. Jeff Bingaman [D-NM]

    Sen. Sherrod Brown [D-OH]

    Sen. Richard Burr [R-NC]

    Sen. Robert Casey [D-PA]

    Sen. Thomas Coburn [R-OK]

    Sen. Christopher Dodd [D-CT]

    Sen. Al Franken [D-MN]

    Sen. Judd Gregg [R-NH]

    Sen. Kay Hagan [D-NC]

    Sen. Orrin Hatch [R-UT]

    Sen. John Isakson [R-GA]

    Sen. John McCain [R-AZ]

    Sen. Jeff Merkley [D-OR]

    Sen. Barbara Mikulski [D-MD]

    Sen. Lisa Murkowski [R-AK]

    Sen. Patty Murray [D-WA]

    Sen. John Reed [D-RI]

    Sen. Pat Roberts [R-KS]

    Sen. Bernard Sanders [I-VT]

    Members
    The subcommittee on Children and Families has 17 members. Use the buttons below to see all of the members.

    Chairman
    Sen. Christopher Dodd [D-CT]
    Ranking Member
    Sen. Lamar Alexander [R-TN]

    Sen. Jeff Bingaman [D-NM]

    Sen. Sherrod Brown [D-OH]

    Sen. Robert Casey [D-PA]

    Sen. Thomas Coburn [R-OK]
    Ex Officio
    Sen. Michael Enzi [R-WY]

    Sen. Judd Gregg [R-NH]

    Sen. Kay Hagan [D-NC]

    Sen. Orrin Hatch [R-UT]

    Sen. John McCain [R-AZ]

    Sen. Jeff Merkley [D-OR]

    Sen. Lisa Murkowski [R-AK]

    Sen. Patty Murray [D-WA]

    Sen. John Reed [D-RI]

    Sen. Pat Roberts [R-KS]

    Sen. Bernard Sanders [I-VT]
  12. citybug

    citybug Senior Member

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    Also, WPI would be local (a one-time PWC)

    Cher at The Colosseum at Caesars Palace - Thursday, Nov. 19, - Dec 20
    Caesars Palace
    3570 Las Vegas Blvd South
    Las Vegas, NV 89109
  13. markmc2000

    markmc2000 Guest

    HI folks,

    Here are some potential ideas/subject matter for letters, I'm sure others here can articulate some of the issues better than I, but here are some points I have mailed my congressmen about.


    1) give CFS a meaningful name. more like ME.

    2) Make CFS education part of Universities cirriculum so doctors can understand how to diagnosis, treat, and study CFS.

    3) Get research money for the education, treatment, and cures for disease.

    4) Congressional hearings, on CFS and CDC everything else..

    I just basically every few weeks write barack, call my senators and such. The list above for all the commitees is fantastic too.

    However, I hope we can get it done with or without government, and by keeping the grass roots effort started by Mrs Whittemore and Dan Peterson going strong. Other thru other great resources like the website Cort and others here have done to move things ahead.

    The key seems to me that everybody who is physically/mentally able can just figure out what he or she may be able to add and jump in and make it happen. It amy be one letter, one dollar,or whatever. But it all helps move things foward.

    Thanks,
    Mark
  14. Frickly

    Frickly Senior Member

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    Texas
    Good idea!

    Good idea, I sent a link to WPI to my mom as she donates a generous sum of money around Christmas time each year to different organizations. This year it will be WPI. In the U.S. charitable donations are tax deductible and the end of the year is a good time to ask for money.

    We need a good writer. Anyone interested in writing a form letter that we can all use to ask for WPI contributions?

    http://taxes.about.com/od/deductionscredits/a/CharityDonation.htm
  15. citybug

    citybug Senior Member

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    For me #1 in the letters is emergency funding for WPI and XMRV research. A lot needs to be done right now and the announcement came after stimulus packages went out.

    The grass roots part is telling them that's what we want right now. And I've been waiting 20 years. They have a chance to do something.

    Kathy
  16. KC22

    KC22 Senior Member

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    Ohio
    Good ideas..

    I just wrote Ms. Sebelius a letter. My main focus in the letter was the funds for the research. We need that first, then we can address education, CDC dropping the ball, etc.

    Without the money and the research, it will be hard to do any of the other things.

    I will work on congressmen and president later.

    Good thread!!!:eek:
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    Back in the early advocacy days, my old friend Tom Hennessy sent letters to many friends asking for donations for research. It's a great idea.

    As for government funding, I wrote and posted this just prior to the XMRV news, but the government still works the same way, and now is a great opportunity to do congressional hearings. Apparently some folks mentioned congressional hearings at the CFSAC meeting last week... :)

    http://forums.aboutmecfs.org/showthread.php?t=599
  18. Frank

    Frank Senior Member

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    Europe
    Let's get to work! Donate, Advocate!
  19. MEG

    MEG Senior Member

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    Asheville, NC
    WPI donations

    Thanks for the reminder...I am going to send WPI another donation right now. WPI is doing sooo much for us now...
    We need to email, snail mail every rep in Congress, Senate etc. Thank you for posting addresses/contacts. We MUST continue to keep research and treatment options at the top of the list at CDC and NIH. It won't happen unless we are very outspoken and proactive.
    Also, don't forget that this site needs financil support as well. There is not another site like this...it is VERY informative, professional and many other good things. (brain fog here, sorry) Thanks to everyone who contributes , in every way, to this site. This site is my lifeline...
  20. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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