1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Institute of Medicine (IOM) Review of ME/CFS Clinical Definition: First Open Meeting
Gabby Klein provides a useful summary of what was a very important, and quite extensive, IOM open meeting. US Government representatives, patient organizations, advocates and individual patients all made formal presentations...
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Introducing the Blue Ribbon Foundation

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 16, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    Ryan Prior recalls why he and Nicole Castillo decided to make a movie about ME/CFS, and explains why they've now decided to form the Blue Ribbon Foundation as a new non-profit organization

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    A year ago, I wrote a story for USA Today about my experience with ME/CFS that changed the trajectory of my life. The response to my story taught me just how neglected the ME/CFS patient population is. My plan after graduating from the University of Georgia had been to write about politics. I thought I would move back to Washington to work as a political journalist or as a speechwriter for a congressman or senator.

    But my story on ME/CFS kept tugging at me. If I didn't become that political writer, there was still a long line of applicants behind me who could easily and eagerly take up that mantle. To me, it felt far more exhilarating to break new ground and make a documentary. It was exhilarating to feel this work would never get done without myself and others making a conscious decision to do it.

    That's why Nicole Castillo and I set out six months ago on the journey of a lifetime. I was transforming from writing on politics to making a movie on microbiology. But Nicole was coming home. Her dream was to make documentaries on medical or social justice topics. And what better chance to fulfill her dream than to tell the great under-reported medical story of our time?

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    Click the image to view the video



    Making the movie

    So far we've shot footage in California, Nevada, Alabama, Georgia, Florida, North Carolina, and the District of Columbia. We've filmed with bedbound patients, homebound patients, and with many of the top experts in the ME/CFS and neuroimmune field: luminaries like Dan Peterson, Andy Kogelnik, Staci Stevens, Chris Snell, Mark Van Ness, Judy Mikovits, Charles Lapp, Nancy Klimas, and Gordon Broderick. We've also shot footage with an even longer list of brilliant researchers whom many patients don't know yet. For instance, there's Ron Davis, one of the men who very nearly invented the field of genomics, who is facilitating ME/CFS genetics research at Stanford. Then there's William Pridgen, who is leading a clinical trial on a new drug combo targeting herpesvirus with the University of Alabama.

    We set out to make a film that would inspire people. And we think 21st century medicine is the best way to move the masses. As we look back at the footage, I like to think this is going to be the kind of a movie that a 15-year-old could watch and decide immediately to become a scientist. This stuff is that cool. Throughout history, science has always made strides to improve human life, and this story is no different. As Dan Peterson said in his interview with us, "I'm a believer in the model, we just haven't gotten there yet."



    Making the movie matter

    But making the movie is only half the battle. Making the movie matter is the other half. To be sure, we still plan on distributing our film through film festivals, DVD, Hulu, iTunes, and Amazon. Additionally, we've had 40 individuals or groups from six nations sign up to stage screenings in their own communities. We think we can get that number to 300 in the first year. Folks from Vancouver to Sydney are ready not just to see the movie, but to really use the movie to create change. We often say this isn't just a movie; it's a movement.

    Stage a Screening in Your Community

    It's A Movement (Facebook)



    Founding a new Non-Profit

    And it can be a highly targeted movement to the people who need to hear its message most. That's why we decided to incorporate the Blue Ribbon Foundation as a 501(c)(3) non-profit organization to lead a three-pronged mission in awareness (the documentary), education (the Blue Ribbon Fellowship), and fundraising for research (Step Up for ME). We want this film to have an immediate impact for families, nurses, doctors, local organizations, and large-scale advocacy initiatives.

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    Step Up for ME: Click the image to view the video

    Nicole will serve as the first Director of the Foundation, I currently serve as president of the Board. Other members of our Board of Directors include:

    • Linda Tannenbaum (Executive Director, Open Medicine Foundation)
    • Joey Tuan (Co-Founder, HealClick.com)
    • Hannah Tsui (Silicon Valley Entrepreneur)
    • Giridhar Subramanian (Analyst, CSX Transportation)
    With our 501(c)(3) arm now formed (pending IRS determination), we can outline several exciting ways to make this documentary's message stick.


    Making the message stick

    First, numerous healthcare filmmakers have partnered with Continuing Medical Education (CME) providers so that doctors and nurses who watch their films can receive CME credit. We're embracing that. It's the perfect incentive to engage the medical community. Much of the educational material physicians would absorb from The Blue Ribbon would pertain to the definition (with an emphasis of the Canadian Consensus Criteria), prevalence, symptom severity, bio-markers (low NK cell function, immune dysfunction, low V02 max, mitochondrial dysfunction, etc.), cost to society, latest therapies (such as antivirals), and coping mechanisms.

    Second, we would like to create a system and an information package by which patients can systematically distribute the film via local support groups so that patients can partner with their physician in seeking adequate care. Such a package might give patients a set of talking points in how to direct the conversation. It would provide doctors with brief, yet detailed information that could prepare them to watch the documentary, receive CME credit, and better help the patient.

    Third, we have been laying the groundwork for a medical fellowship by which current medical students can spend their summers studying and researching at the top ME/CFS institutes in the world. The Blue Ribbon Fellowship will enable them to experience the thrilling sights and sounds we get to experience on the film set every single day. They'll get a glimpse into the future of medicine, observing and participating in innovative collaboration spanning Big Data, gene expression, molecular biology, and translational medicine.

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    The Blue Ribbon Foundation Medical Fellowship: Click the image to view the video



    Reaching practicing and future doctors

    Both the Blue Ribbon documentary and the Blue Ribbon Foundation strive to reach doctors at each stage of their careers. Practicing doctors can receive CME credit. Future doctors can apply for our fellowship program, a program that could inspire and equip them to build a career and a practice fighting neuro-immune diseases.

    The Blue Ribbon Fellowship proposal calls for $50,000 to fund ten fellows for eight-week summer internships funded at the rate of $5,000 per student. At a time when many of the first generation of the ME/CFS pioneers is nearing retirement, we believe the Blue Ribbon Fellowship program delivers the best bang for the buck to light fires in the minds of the next generation of neuroimmune visionaries. In a future article for Phoenix Rising, we'll outline our new initiative, Step Up for M.E., which will empower patients, families, and communities to build awareness and help raise money for research, each in their own unique way. Together we can team up to make CME credits, physician education, and the Blue Ribbon Fellowship a reality.

    This is our vision not just for making a film, but for implementing an innovative, scalable, and sustainable approach to 21st century physician education.

    To join our movement, and receive updates via Facebook, click here: www.facebook.com/cfsdocumentary

    To support the documentary or its educational initiatives, please visit: www.mecfsdocumentary.com or www.theblueribbonfoundation.org






    Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.

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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @RyanPrior

    Great plan. Wonderful that you guys are doing this.

    The fellowships for medical students is just what is needed. Do you have any thoughts about how to reach medical students in other countries, such as in Europe, where they don't have an 8 week summer vacation?

    Best wishes,
    Sushi
  3. RyanPrior

    RyanPrior

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    @Sushi

    We're still liaising with the (U.S.) sites to figure out how to best design a program that would enable the interns to make a difference at each site. The 8-week summer plan is pretty good (and can be found at cancer institutes), but there are also other formats that could work, such as a 12-15-week semester program. The main thing is to just check on the individual preferences of European institutes or offices to see what could work in individual situations.

    The money is a nice incentive for students, but getting co-author credit on a publication is probably even better. The real trick is to design a program that has measurable outcomes like publication for students; this may take longer than 8 weeks.

    Thanks,
    Ryan
  4. Ren

    Ren Deep breath - lots of deep breaths...

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    Exciting and hope-inspiring -- look forward to learning more and sharing this info with my political representatives. Thank you!
  5. Wally

    Wally Senior Member

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    Ryan,

    What you are doing is so wonderful. I have felt very privileged to get to know you through our many hours spent talking over the phone and via e-mail. One day I hope that we get the opportunity to meet in person.

    A discussion has started on the Forum about fundraising and patient involvement in supporting and contributing to a fundraiser. Would you be able to comment in more detail either here, on the thread linked below*, or in a new thread that could be posted on the Forum and elsewhere about the type of questions to ask of someone fundraising for this illness? Specifically, I think people would like to understand how money raised for your documentary will be allocated and how you see an accounting of funds be demonstrated to those who donate to your project and/or Foundation.

    Thanks. I believe you are one of the bright and shining stars who represent our future and the hope that this illness is finally moving toward the light.

    Susan Kreutzer (Wally)

    *http://forums.phoenixrising.me/inde...r-prof-lipkins-study.25213/page-6#post-413061
    RyanPrior likes this.
  6. RyanPrior

    RyanPrior

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    Thanks Susan,

    I've really enjoyed getting to meet you too. And hopefully we can meet soon!

    I sent a little message on the forums on my thoughts on how to raise money well for big research projects.

    All best,
    Ryan
  7. apogan

    apogan

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    Thank you for your hard and inspired work. Looking forward to the debut!

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