1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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2nd Annual 24 Hours in the Enchanted Forest: A Race to SolveCFS

Discussion in 'Action Alerts and Advocacy' started by goodellcl, Mar 21, 2011.

  1. goodellcl

    goodellcl

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    Albuquerque, New Mexico
    Hi everyone,

    I was diagnosed with ME/CFS 6 years ago. After many years of mountain biking and competing I thought there ought to be a cycling event that could benefit ME/CFS, so I contacted a race director I knew and told her about myself, ME/CFS, and my idea. She replied saying that she wanted to start New Mexico's first 24 hour mountain bike race, and that she had also been diagnosed with ME/CFS. Well, the relationship and the planning commenced, and together with 3 other staff members and 80 volunteers, the 2010 24 HITEF was a huge success.

    With about 250 racers we raised over $9,000 in cash and over $20,000 worth of in-kind donations, which all went to The CFIDS Association of America. This year we expect to double pariticipation and I have ramped up the fundraising efforts. Donations will continue to benefit The CFIDS Association of America.

    You can Help!
    Please consider sending a downloadable letter to friends, family, current or previous co-workers, etc. The more people who know about this event the more we can circulate awareness about ME/CFS and increase our fundraising power. Instructions can be found below, or on the event website under the link for Fundraising.

    This is a portion of what I have sent out to my non-patient contacts.

    There are several things you can do.

    1) You can register to race competitively or recreationally
    2) You can sign up to volunteer a block of time at the event
    3) You can purchase some very nice glass mugs, which are sand etched and hand painted by Brad Goodell, who has generously agreed to donate a portion of the proceeds to SolveCFS. They can be viewed and purchased through the Shop link on the website.
    4) You can easily run your own fundraising campaign. On the Fundraising link you will find downloadable fundraising template letters /forms for racers, patients, and others. These can be shared with family, friends, co-workers, etc. via snail mail, email, or Facebook. Students can run a fundraising campaign (providing awareness that there are pediatric patients as well).

    Please consider supporting this event however you can, and please share this email with others.

    Thank you,
    Claudia Goodell
    Fundraising 24 HITEF
    aracetosolvecfs@24hitef.com

    www.24hitef.com
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  2. markmc20001

    markmc20001 Guest

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    Love the idea of a mountain bike race. I love to ride. Enjoy offroad motorcycles too. :O)

    Glad your raising money. However, not sure you have the right Charity. Not saying your selected is charity bad, just some charities have conflicts of interest or don't have a track record of getting anything productive done. Most charities I know of don't fund bio-medical research, which is what i'm most interested in.

    My favorite charity is the WPI and they are heavily involved with bio-medical research. The founders daughter has been sick along time hence I feel my money is used genuinely.
  3. SpecialK82

    SpecialK82 Senior Member

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    USA
    How awesome! I have thought that we need some sort of walkathon or event that we could do annually - so glad that you have started one. Would love if this would spread across the country :thumbsup:
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I agree with Mark here, I saw this and remember it from last year, and even though I am donating a lot lately I was considering it, but since you mention CAA, no thanks!

    GG

    PS I used to enjoy Mtn Biking also, and hope to get on my road bike a little this year!
  5. Dolphin

    Dolphin Senior Member

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    What is sometimes forgotten is that the CAA relative to a lot of ME/CFS charities worldwide are good funders of biomedical research. Some ME/CFS charities wash their hands of this responsibility (raising money for biomedical research) which I don't like.

    People are free to prefer the WPI of course.
  6. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Thanks Claudia - congratulations on such a successful event - I didn't know you brought in so much money. Best of luck for the next one.
  7. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    The CAA is funding research into mitochondrial problems in the brain, endogenous retroviruses in CFS, the gut microflora, blood vessel problems and XMRV......plus they have built a BioBank that is collaborating with Dr. Peterson, Dr. Bateman, Dr. Lapp and others and are building a Research Network...

    Fund whomever you like; MERUK is doing excellent research, the WPI is, the CAA is...and others are.
  8. Dolphin

    Dolphin Senior Member

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    Yes, there are a few like you say and people are free to give to whoever they choose.
    My point is that many do not collect much/don't put a focus on it or don't even have a research fund. I don't mind small groups with small turnovers not doing it of course.

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