From the CEO’s Desk
February 23, 2012
Today, we break new ground.
Many times over the 25-year history of the CFIDS Association we have shared news about new research grants funded. Until today, those grants were made under a traditional nonprofit model. We raised money from supporters, vetted various project proposals and then gave the money to someone else and hoped for the best. Sometimes our hopes were realized, like with the last round of grants (2009 – 2010) that have already yielded nearly $5 million in follow-on funding, seven times the original grant award total. But we’re not satisfied with outcomes that don’t have more immediate impact on patients’ lives.
Today, we break out of that conventional model.
Many innovative disease-based organizations are shifting from being passive research sponsors to being active research partners. Today, the CFIDS Association joins the company of organizations like the Michael J. Fox Foundation, the Myelin Repair Foundation, the Susan B. Love Foundation for Breast Cancer Research and the Multiple Myeloma Research Foundation. Today, we go beyond the new models pioneered by these fine organizations. Today, we cut the ribbon on our “research institute without walls” that positions the Association as the center hub of a multi-spoked wheel of linked research projects led by top talents working in diverse disciplines at leading institutions.
Today, we become active partners with our grantees.
Today, YOU become partners in research.
Through the SolveCFS BioBank and The Catalyst Fund, your participation is what fuels the Association’s transformative research program. From joining the BioBank’s registry, to providing medical information and blood and tissue samples, to making donations small and large, your participation has made this shift from passive sponsor to active partner possible.
Today, we celebrate you.
Four-hundred-fifty-eight consented participants in the SolveCFS BioBank. 2,032 donors to The Catalyst Fund. All those who have shared links to our Research1st or Facebook posts, retweeted our messages and invited a friend to support the cause we share. YOU have inspired our action and made today’s announcements possible.
Today, we pay tribute to the collective action that has led up to today’s announcements. I’d like to highlight two individuals whose contributions are immensely important. First, James York, the first person consented and enrolled to participate in the BioBank. James was working as an underwater camera man and marine coordinator in the film industry when pneumonia turned into CFS in 2004. He has turned to writing when cognitive impairment can be kept at bay, as a form of expression and, occasionally, compensation. James enrolled in the BioBank as soon as it was announced. He returned his signed consent form promptly; completed the extensive medical history questionnaire thoroughly and expeditiously and even recruited his own matched control to participate. He gave blood samples and tissue swabs. He did so as part of an odyssey to learn about CFS and cope with it. He also donates to The Catalyst Fund.
When I contacted James to ask permission to share his name in this story, he told me this:
“You and your organization have been, and continue to be, a beacon of steadfast reason amid the sea-changes of politics and medical misinformation. The research you fund and the information you aggregate and then organize and share with us provides valid hope for a desperately underserved patient population. It also helps inform otherwise less-than-knowledgeable medical professionals. Your ongoing advocacy efforts are heroic in scope. I, like many others, am so grateful for your hard work to legitimize, ultimately understand and reverse this challenging disease. Frankly, I am stunned that I was the first to provide written consent. I certainly wish I could do more for you all — financially, physically and intellectually. I firmly believe your hard work and diligence and adherence to the scientific method, will prevail in the ongoing challenge to understand this debilitating disease.”
James is a true Catalyst in every sense of the word. We honor and thank him for paving the way.
Second, author Laura Hillenbrand. Laura’s writing has earned her many honors, including two long runs on the New York Times bestseller list with Seabiscuit and Unbroken. Her gripping essay about CFS, “A Sudden Illness,” won the National Magazine Award for The New Yorker in 2003. It remains one of the magazine’s most-requested articles. The critical acclaim and popularity of her books has given her an unparalleled platform to raise awareness and deepen understanding about CFS, a disease that has held her in its grip for 25 years. Today, we are humbled to share news of her exemplary commitment to the cause — a $250,000 gift to The Catalyst Fund. In Laura’s words,
“I’m thrilled to be able to make a major commitment to the CFIDS Association of America. This is a pivotal and enormously promising time for ME/CFS patients, and I’m tremendously excited about the organization’s innovative, inspired, dynamic, research-focused approach. Guided by a scientific advisory board comprised of the leading luminaries in the field, they’re funding cutting-edge research that holds the promise of unraveling the ME/CFS mystery and unearthing treatment and a cure. And through their SolveCFS tissue and blood BioBank, as well as their comprehensive research literature database, they’re greatly facilitating and accelerating the study of the disease and bringing the research community together in a coordinated effort to solve it. I believe in the work they’re doing, and I believe in the people who are making it happen.
“I’ve had ME/CFS for 25 years, my entire adult life. The suffering it has caused me, and the losses it has cost me, are beyond my ability to articulate. But I’ve never been more hopeful than I am now. I believe a breakthrough is imminent, and the CFIDS Association is helping lead the way to it. I want to do everything in my power to help, so I’m delighted to be making this commitment now. I hope others will join me in supporting the CFIDS Association, so everyone who suffers from this disease can finally be set free.”
To every one of the James Yorks and Laura Hillenbrands who have made this paradigm shift, this set of announcements and this kind of active partnership possible, we express our deepest, most sincere thanks.
Today is not about us; it’s about you.
K. Kimberly McCleary has been the Association’s chief staff executive since February 1991.