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ONE MINUTE ADVOCACY #2; and GREAT Feedback on Thank You Card

Discussion in 'Action Alerts and Advocacy' started by parvofighter, May 17, 2013.

  1. parvofighter

    parvofighter Senior Member

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    ONE MINUTE ADVOCACY #2: Please sign this card for the VMware Foundation!

    AND AN UPDATE: Feedback on the Edward P. Evans Foundation’s card of thanks!
    Recently we asked you to sign a Thank You card for the Edward P..Evans Foundation, for its grant to the Open Medicine Foundation on genomic research in the constellation of ME/CFS diseases. As of today, we have 125 signatures from around the world, from countries including Australia, Belgium, Canada, England, France, Germany, Ireland, New Zealand, Scotland, the Netherlands, Wales, and of course from all over the USA. Thank you!

    What really came through in the comments on the card was:
    - How desperately we need research into the constellation of ME/CFS diseases
    - How devastating these diseases are – many people wrote of decades of debilitation, and profound losses and medical neglect
    - The huge impact of ME/CFS on not only patients, but also loved ones
    - How enormously patients appreciate philanthropic support of ME/CFS research; and
    - That ME/CFS philanthropy gives HOPE to patients from around the world.
    You can see the card here: http://www.groupcard.com/c/8W9nORILuaR/ol. It’s a compelling read.

    Why “Thank-Yous” from the international patient community are so important
    Philanthropists like to know that their money is being well spent; and that it has meaningful and far-reaching impact. Your comments beautifully highlighted that achievement! We thought you would like to know the immediate impact this card has had. Linda Tannenbaum, Executive Director of the Open Medicine Foundation just shared the following note from the Edward P. Evans Foundation’s Executive Director:

    What the Edward Evans Foundation said about the card

    "It was so wonderful and heartwarming to read the comments. It made me feel great...
    The genome sequencing project will be such an important piece of science
    and I am hopeful it will illuminate many areas for future research.
    I’ve shared the card with the board and am so overwhelmed by the wonderful gesture.
    PS – We updated our website to show the OMI project, yay!

    So in philanthropic terms, investment in ME/CFS gives a very meaningful and rewarding return! In as little as a minute, patients around the world helped increase name brand recognition of ME/CFS and of the Open Medicine Institute. And patients increased the chances that our philanthropists will give again – or that they will tell their philanthropic friends of the urgent need, for support of the neuro-immune community and of the groundbreaking research efforts of the Open Medicine Institute and the OMI-Merit collaboration, on our behalf. In other words, this is one area where seriously ill patients – with relatively little effort – can make a difference!

    A patient has arranged to have a poster or flip book version of the card made, so that the donating foundations can permanently display the thanks – a positive and visible way of showing that they are making a difference.

    Invitation to invest another minute: Thank-you card for the VMware Foundation
    As you may have heard this week, the Wall Street Journal (http://online.wsj.com/article/PR-CO-20130514-907780.html?mod=googlenews_wsj), and the Open Medicine Foundation (http://openmedicineinstitute.org/news-events/press-releases/vmware ), announced yet another substantial fundraising success for the ME/CFS community. The VMware Foundation has provided an exciting grant of financial and consulting support, which will enable the Open Medicine Institute to build a world-class information technology platform to support Personalized Medicine for complex neuro-immune diseases such as the ME/CFS constellation of diseases.
    Personalized Medicine is all about understanding disease at the molecular level, such as the unique proteins, produced by each of our individual genetic codes, which might serve as therapeutic targets for drugs to treat.

    Why is information technology support, such as the VMware grant, vital to our search for treatments and a cure for ME/CFS?
    It should be apparent by now that we need the collaboration of many disciplines in order to understand and effectively treat these complex multisystem diseases. At the recent FDA workshop on accelerating drug development for ME/CFS (http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm ), our community was urged to develop knowledge infrastructure such as documentation of the Natural History of these diseases, shared Bio-banks and Open-Source data - or data that can be freely shared around the world. It will take robust computing power, and the power of many bright minds in ME/CFS research and clinical practice, to crack these diseases. Indeed, one FDA workshop speaker stated, “This condition is probably one of the greatest intellectual challenges in medicine”.

    The Open Medicine Institute is uniquely positioned to take this process several steps further by also integrating genomics, or the molecular fingerprints of disease (supported by the Edward P. Evans Foundation’s grant), the clinical expertise of world leaders in ME/CFS (represented in the OMI-MERIT signators here http://openmedicineinstitute.org/research-initiatives/mecfs-merit ), and the social networking and IT strengths of Silicon Valley, represented in the VMware grant. This grant will enable the Open Medicine Institute to collect, share, and analyze thousands of data points on ME/CFS clinical findings. A powerful “Open-Source” IT platform, will enable seamless sharing of patient data (compliant with HIIPA, and with patient consent) with the many international signators of the OMI-MERIT research consortium. It will enable researchers to map out the molecular changes in “responders” to treatments vs non-responders, and ultimately to know in advance which patients will be likely to respond to which treatments; the essence of Personalized Medicine. VMware, a global IT expert in cloud computing, is abundantly qualified to develop a cutting edge technology platform that will leverage this mountain of patient data, and the brainpower of ME/CFS researchers around the world.

    For patients, what matters is that research be translated swiftly into effective treatments. For diseases as complex as ME/CFS, we will heavily depend on IT support to translate huge amounts of data into actionable information. And for this reason we are indebted to the VMware Foundation for helping make sense of this complexity.

    As the Open Medicine Foundation commented in its press release on the VMware grant:

    “By integrating an open-source platform, clinical expertise, global scientific research,
    genomics and the benefits of social networking, OMI is advancing the understanding
    of neuro-immune and other complex diseases including: Autism,
    Myalgic Encephalomyelitis/Chronic Fatigue, Lyme, Multiple Sclerosis and Parkinson’s.”

    How you can help: Please Take 1 minute to sign the VMware Thank You Card!
    Here is another opportunity to give thanks – and increase awareness of the desperate need for research into ME/CFS diseases. Please sign the Thank You card to the VMware Foundation here: (http://www.groupcard.com/c/ZjA2X_lwClv ). The card will be available until Friday, May 24th.

    Note: This update has been submitted by a patient, with the permission of Linda Tannenbaum, Executive Director of the Open Medicine Foundation.

    Please feel free to copy and share this post in its entirety.
     
    WillowJ, SOC, Nielk and 3 others like this.
  2. parvofighter

    parvofighter Senior Member

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    P.S. When you sign the VMware Foundation card (http://www.groupcard.com/c/ZjA2X_lwClv ), please add:
    • YOUR COUNTRY - you can fit it behind your signature
    • HOW MANY YEARS you have been ill, housebound, or bedbound

    Thanks!
     
    snowathlete likes this.
  3. Sparrow

    Sparrow Senior Member

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    I just wanted to say what a fantastic approach this is. We've all heard how the most effective advocacy efforts involve stories. What a wonderful way to encourage people who are going in the right direction, encourage continued support in the future, and to get our stories heard in a way that also shows us as the grateful people we are. Excellent all around.
     
    beaker, WillowJ and Sasha like this.
  4. snowathlete

    snowathlete

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    Thanks Parvo! Great to have someone coordinating these efforts because they are so important!
    Great to have the feedback too!

    I've signed.
     
    beaker likes this.
  5. snowathlete

    snowathlete

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    Yes, and maybe one day soon, we can get somethign like this in the press, instead of all the nonesense about us patients.
     
    beaker, WillowJ and Sasha like this.
  6. Sasha

    Sasha Fine, thank you

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    Signed!

    Excellent initiative, this. I really like it! 'One Minute Advocacy'. Brilliant!
     
    beaker and snowathlete like this.
  7. parvofighter

    parvofighter Senior Member

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    ONE MINUTE ADVOCACY #2: I've been crashed, so unable to beat the bushes recently. Please sign this card for the VMware Foundation, as thanks for their grant to the Open Medicine Institute. Your one minute REALLY makes a difference! Link: http://www.groupcard.com/c/ZjA2X_lwClv

    AND ANOTHER UPDATE: Julia Newton talks about how patient feedback helped them get a grant
    Here is another example of how short anecdotes about disease can help bring money to the field:

    As part of the normal grant review process we were given the opportunity to respond to the comments made by people who had reviewed our grant, and one of the comments was that the reviewer did not believe that patients with a symptom as mild as fatigue would be willing to undergo such an invasive treatment as Rituximab.

    “Having calmed down from being annoyed, we then realized that this was an opportunity rather than a threat and our immediate response was to contact the patient group (Liver North, who we have very close working relationships with) and ask them to contact their membership for their response to this statement. This resulted in over 15 pages of comments from patients which made it quite clear that they would go to any lengths to have a treatment that might in any way improve the symptoms of fatigue. As you might imagine we got the grant as a result!
    Dr Julia Newton

    Patient Feedback: VITAL to Philanthropists giving money to ME & CFS research!
    If this works for Primary Biliary Cirrhosis, it can work for M.E. too! Indeed, the Open Medicine Foundation already commented on how valuable your comments were in the Thank You card to the Edward P. Evans Foundation (see my 1st post in this thread). You can sign the card for the VMware Foundation's grant to the Open Medicine Institute here: http://www.groupcard.com/c/ZjA2X_lwClv

    Feel free to repost any of my posts in this thread.​
    Thank you!​
     
  8. Sasha

    Sasha Fine, thank you

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    parvofighter - well done for doing this, it's a great initiative!

    Have you put it out via Co-Cure? It's a big ME mailing list that reaches a lot of people (but oddly, isn't well known outside of its own list).
     
    beaker and snowathlete like this.
  9. parvofighter

    parvofighter Senior Member

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    Thank you Sasha! Yes, I did last time - got a little sidetracked with this crash, but am doing the Co-cure post in the next couple of hours. Thanks for the encouragement!
     
    beaker, snowathlete and Sasha like this.
  10. parvofighter

    parvofighter Senior Member

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    SUMMARY: 5 REASONS TO SIGN THE VMWARE CARD!
    1) IT ONLY TAKES ONE MINUTE here:http://www.groupcard.com/c/ZjA2X_lwClv . (And you can use a pseudonym).

    2) INFORMATION TECHNOLOGY HELPS US: “ME/CFS” likely represents MANY subgroups of multisystem diseases. We need the Information Technology support provided by the VMware grant, to decipher these complex diseases, so we can find cures for each subgroup!

    3) YOUR THANKS MEAN A LOT TO PHILANTHROPISTS HELPING US!: Heartfelt “Thank You’s” from patients REALLY make a difference to philanthropists. Such expressions of appreciation:
    a. Give a human face to these diseases;
    b. Document the years & decades of life lost to ME & CFS;
    c. Demonstrate that their philanthropy is hugely meaningful to recipients;
    d. Show philanthropists that their impact is not only in the US, but across the globe (please specify your country when you sign the card); and
    e. Encourage philanthropists to give again, and/or tell their philanthropist friends of the desperate need for (and worldwide appreciation of ) funding for ME/CFS research.

    4) THE OPEN MEDICINE INSTITUTE’S RESEARCH IS CUTTING-EDGE: The Open Medicine Institute and Foundation, which received the VMware Grant, is doing some of the most exciting research in the world on ME/CFS. You can see their research priorities, and a list of their collaborators here: http://openmedicineinstitute.org/research-initiatives/mecfs-merit

    5) YOU CAN MAKE A DIFFERENCE! YOU can make a difference – with very little effort. This is one type of advocacy which you can really do in a minute!

    You can read more about the VMware grant to the Open Medicine Foundation at these links:
    We’ve extended the deadline to sign the VMware Card to Friday May 31st!
    This Thank-You card has been created by an ME patient,
    with the permission of the Open Medicine Foundation
    Thank you!
     
    Little Bluestem, Sasha and beaker like this.
  11. beaker

    beaker CFS/ME 1986

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    signed.
    and thank you to those who are able to use what energy they have to set this up for those of us who cannot.
     
    Sasha likes this.
  12. WillowJ

    WillowJ Senior Member

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    I got a notice in my email as a "last chance" to sign the second card (I did) or ask others to sign, so it must be getting close to delivery date.
     
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have tried twice to sign this, but it will not load on my dial-up connection. I gave it quite a bit of time. I can see the page, but nothing is active and there those rotating circles that indicate something is still trying to load.
     
  14. parvofighter

    parvofighter Senior Member

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    Hi @ Bluestem, if you would like me to sign the card on your behalf, just post or message me what you would like me to say, and I can do it for you. Alternately, here is the link for Groupcards help: http://www.groupcard.com/help/ , and here is an email address for one of their support people Richard: rich@groupcard.com

    I've found the Groupcards site is pretty slow too, but I'm not on a dial-up connection, and am awful with tech issues, so I can't help you there, LOL...
     
  15. parvofighter

    parvofighter Senior Member

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    LAST DAY TO SIGN THE VMWARE THANK YOU CARD!!!!!!!!

    We know that M.E. is a complex disease. The team at VMware are providing vital information technology support to the Open Medicine institute, to help them make sense of our disease. These thank you cards REALLY make an impact with sponsors of ME research, so the more signatures the better! Please also remember to put your country next to your signature, so we can show how far-reaching their impact is.

    Thank you!​
     
    WillowJ and Sasha like this.
  16. maryb

    maryb iherb code TAK122

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    Only 63:rolleyes: people signed it? Or have I got that wrong?
     
  17. Sasha

    Sasha Fine, thank you

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    What? :eek:

    It's not called 'one-minute advocacy' for nothing! Come on, guys!
     
  18. Sasha

    Sasha Fine, thank you

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    Bump! :angel:
     
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Is there another thread about this card? I did finally get it signed. I just checked and my signature is there.

    While I do think that more money needs to be thrown at the problem, it is not the only thing we need. The donation of information technology support was very useful.

    If you have not yet signed this thank-you cared, DO SO!
     
    Sasha likes this.
  20. Sasha

    Sasha Fine, thank you

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    Only one that I've noticed - but there's another one on the go for Maria's card.

    Nice signature! It's colour-matched! I've never seen one so tasteful! :thumbsup:
     

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