Step Up for ME

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December 4, 2013

Today, the Blue Ribbon Foundation announced the launch of Step Up for M.E., an online platform that facilitates international fundraising for the ME/CFS community. The platform is modeled after those by non-profits such as the MuscularDystrophy Association, the American Cancer Society and the Alzheimer’s Association, all of which use online fundraisers to raise millions of dollars for research, education, advocacy, and legal aid, and to bolster support for the families of those afflicted with these illnesses.

“We wanted a dynamic, easy-to-use platform for our patient community to emulate successful models of grassroots advocacy in other diseases,” said Nicole Castillo, the director of the Blue Ribbon Foundation.

Established by Ryan Prior and Nicole Castillo, co-directors of an upcoming documentary film on ME/CFS, the Blue Ribbon Foundation intends to serve as as a 501(c)3 charity that will foster interdisciplinary collaboration between ME/CFS patients, physicians, and researchers. It entails a comprehensive vision to revolutionize ME/CFS physician education, and consequently, transform the health care of our patients.

The Step Up for M.E. platform will help support the proposed educational initiatives of the Blue Ribbon Foundation, including $50,000 annually for a medical fellowship to inspire medical students about neuro-immune diseases, as highlighted by Llewellyn King.

“We were impressed by a quote by Dan Peterson from the pre-released documentary footage: ‘It’s scary to think who is going to take care of these patients when the first generation of the pioneers is retired,’” said Joey Tuan, a member of the Blue Ribbon Foundation’s Board of Directors. “We want to rally the community around a positive cause in response to Peterson’s concern about the trajectory of ME/CFS care.”

Learn more about the new platform and to become involved in grassroots awareness activities in your community below. View the Foundation’s fellowship (video) that outlines its proposal to inspire the next generation of ME/CFS physicians.

What is Step Up for ME? Why do we need it?

The ME/CFS community has had success with fundraising projects for clinical trials or documentaries. But one of the problems with these sorts of initiatives is that the community gets fired up for a month or two but then runs out of steam. We want to create a more long-term infrastructure that takes fundraising and publicity from isolated occurrences to a routine part of this community’s everyday interaction with the world.

Fundraising and publicity are intimately connected. You’re much more likely to get publicity if you’re doing a fundraising event and you’re much likely to get funding if you’ve got publicity.

Step Up for ME is designed to assist with both. It equips local people, sick and healthy alike, to plan, advertise, publicize, and execute any kind of fundraising event.

We’ve had people approach us wanting to do art auctions, dance competitions, cook-offs, bike-a-thons…there’s a whole universe of possibilities. You could use the platform to facilitate an annual volleyball tournament or to do what we’re doing here in Athens, GA: benefit concerts with local bands as part of the “Rock ME Baby” series. Also, in Georgia, we are also planning a Step Up for ME 5K race in Atlanta for mid-to-late spring. We’ve built the 5K logos such that can be used for 5K events anywhere.

We can’t even imagine all the possible ways people will use the platform. But you can. You may already have an idea right now.

How does Step Up for ME work?

Step Up for ME is an international fundraising platform capable of running hundreds of individual fundraisers at once. You fill out the basic online form and set your initial fundraising goal to get started. We provide a personalized page for each person to tell their story and spread the word. We wanted to create a system so easy and attractive that people can’t help but get involved. It doesn’t matter if you’re a full-time professional with a busy family life or if you’re bedridden most of the day. If you’re passionate about spreading awareness and helping a cause, we make it easy and simple for you.

For many, their Step Up for ME experience may be nothing more than 15 minutes filling out the form to create the page and 15 minutes e-mailing it to friends who will become supporters.

But it’s built to be a lot more than a peer-to-peer fundraising network. It’s more powerful when people use the platform to do their own event in their own unique way. We’ll provide sample logos, videos, social media profile/timeline pictures, and more, so your local event has the look and feel of a professional fundraiser.

We’ll even have an online store, so if you’d like to sell your homemade product for charity or buy Step Up for ME gear like t-shirts or custom iPhone covers (coming soon!), that’s a possibility as well.

As an incentive, we will offer prizes to any individual or group who raises more than $1,500 as well as prizes for the top three events in the world each year.

Where did the idea come from?

Often, patients hope for a single celebrity to transform this disease the way Magic Johnson or Elton John transformed AIDS or the way Michael J. Fox transformed Parkinson’s. But it can’t happen overnight. However, I think we can take logical and incremental steps to get toward that point where celebrity advocacy is not the longshot it currently is but rather the logical progression of a cresting movement. Much of that crucial early phase is simply creating a national or international fundraising platform that could evolve toward being our own version of the Relay for Life, Race for the Cure, or Walk of Dimes.

But 5K runs and walkathons are almost cliché. The name “Step Up for ME” is indeed conducive to walks and runs, but is most important as the metaphor of “stepping up” in a spiritual way. A bedridden patient could “step up” simply by filling out the online form, allowing our volunteers to make his or her personalized fundraising page, and then e-mailing the link out to family and friends. This is the basic idea behind Invest in ME’s “Let’s Do It for ME” campaign, the UK’s version of Step Up for ME.

The key here is that family members, friends, classmates, or colleagues feel a real and direct connection with a specific patient. An individual has a chance to tell his or her own story in a safe, yet resonant way, to tell how deeply this illness has affected his or her life. There is hardly anything more powerful in this world than the power of telling a story. Our biggest goal with this project is to simply equip a whole new generation of ME storytellers.

What do you hope Step Up for ME will accomplish?

We want Step Up for ME to bring the story of this illness to every local community. Getting people to talk about ME locally is perhaps even more important than getting into the international media. For example, I announced the Blue Ribbon documentary in an op-ed in USA Today College, and then Llewellyn King wrote about it in the New York Times-Hearst Syndicate. But, ironically, some people in my church weren’t fully invested in our documentary until Ed Grisamore, a beloved columnist in Macon, GA, picked up on the story. That’s when the Blue Ribbon became real to folks in middle Georgia. And that’s how ME/CFS is going to become real to people all across North America and the world at large. It’s going to be through the kid next door organizing a walk-a-thon and through the local writer telling that story. This illness can’t be abstract. It has to be something tugging at the fabric of a community’s conscience. That’s what Step Up for ME has the power to be.

So, on the individual level, this is the chance to tell your own story to your community. And what can be magical about this is the chance to link your own story to hundreds or thousands doing the same thing (virtually) alongside you.

What specific projects will Step Up for ME fund?

The Blue Ribbon Foundation is setting out to accomplish a comprehensive vision in physician education and public understanding:

1.) First, the additional funding will support using the documentary not just as a general interest documentary for film festivals, Hulu, iTunes, DVD, television, etc., but as a tool for physician education. Additional funding via Step Up for ME can accomplish this by:

(a.) enabling doctors and nurses to receive Continuing Medical Education (CME) credit by watching the film (examples of other mainstream documentaries that have done this are “here,” “here,” and “here“:

(b.) organizing a plan to to simulcast the documentary through large-scale screenings at medical schools across the U.S. and abroad (for an example of how this was done for a previous healthcare documentary, click here)

(c.) creating a system by which patients can easily pass along the documentary to doctors to help jump-start the education process at a grassroots clinical level. Through this program, we plan to provide the greatest support to patients that we can in the shortest timeline. Patients are often charged to “be their own advocate,” a task made more difficult by chronic cognitive dysfunction and difficulty communicating. This documentary helps bridge that gap, and the CME credit is an additional incentive for doctors to take that gesture seriously.

All of these precise, targeted educational initiatives are only possible through further funding support.

2.) 

In addition to continuing medical education for practicing doctors, there is also an urgent need to reach future doctors currently in medical school. The Blue Ribbon Foundation has outlined a $50,000 plan to support fellowship stipends for medical students to study at leading neuro-immune or ME/CFS institutes.

The current plan would be capable of facilitating ten fellowships each summer to fill the lack of ME/CFS education available in most medical schools. Upon graduation, these students would form a pool of physicians capable of replacing the first generation of ME/CFS pioneers, many of whom will soon retire. The students could also go on to develop practices devoted to identifying and treating ME/CFS and similar co-morbid illnesses.

From there, the Step Up for ME platform would likely be deployable for collaborative research projects for global benefit. Linda Tannenbaum, executive director of the Open Medicine Foundation, serves on our Board of Directors. The worldwide collaborative research of the OMI-MERIT group is therefore one of the most logical recipients of Step Up for ME funds in the middle or long term.

The Blue Ribbon Foundation’s official mission “is to foster an national dialogue towards finding the cause, cure, and prevention of neuro-immune diseases.”

The Blue Ribbon Foundation is structured as a 501(c)3 non-profit organization. Donations will be tax-deductible to the fullest extent of U.S. law.

 

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