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.
James at work (pre-CFS) in Stargate Cave on Andros Island for the film "Ocean Men"
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.
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I am seriously in tears reading this. Last night was one of those night I was about ready To give up on my life and any hope for the future. I am 26 and have been a severe sufferer since 2009. To wake up and see this today changes so much. I love you James York and Laura Hillenbrand for realizing your generosity is bound to change many lives, mine included.
Absolutely. Others without CFS dont realize how often we have those nights. Or weeks. The debilitation that cannot be understood. The losses that have to be endured along with the pain and overwhelming fatique. Cudo’s to James York and Laura Hillenbrand for their contributions and helping to pave the way in the fight against this insideous disease. Bravo to everyone of us that fought with all our might to keep pushing and searching for answers and Doctors who would listen to us. Most of all, Thank you, Thank you, Thank you to everyone at CFID Association for their remarkable breakout in medical research. “Without Walls” is setting a pressident as to how medical research and information will apply and share itself openly, freely and “without walls” as it shoul be. Thank you again, with all my heart. Sincerely, Noreen M. Everitt
Jennifer
I wish you the best in dealing with this illness
My daughter Jennifer Wright! age 27 has been in the hold of cfs since 1999 recently she has been feeling better what was it? possibly diet no vaccines pacing and a drug called cymbalta helped her cognitve and pain please hang in there she was once 100% disabled now 12 yrs later she still has fatigue sometimes extreme but great improvement from when she first got ill
I wish the best fro all, and pray for research to find a solution to this illness.
P Wright
Congratulations to everyone who has worked so hard to break this ground! Thank you to Laura Hillenbrand for her extraordinary generosity! I give you all a standing ovation from my doctor’s waiting room!
Thanks to everyone who has donated time, energy, money and body samples so that we can walk together into unchartered territory. And Laura – Wow, thank you for being our champion!
I am looking forward to a great year ahead with all my partners – let’s go move mountains!
Just like Jennifer Wright, I burst into tears when I read this announcement. Ten years ago, after just finishing my second novel, I had a mysterious illness. I recovered enough to teach for the next 5 years (with considerable effort) but over the years, was unable to complete a draft of my third,far more complex novel. I was unable to work consistently, remember important details, or keep a sense of the whole in my mind. Everyone seemed to have an explanation for this odd change in my work habits, including a variety of well-meant diagnosis from mental health professionals. Three years ago, I had a second acute episode, and I still believed that my spirits and health would improve if I’d only get back to writing. God knows I tried, but since finally getting a diagnosis ten months ago, and five months ago, beginning treatment with a wise (unfortunately out-of-state) clinician, I understand that it’s the illness that has waylaid my thought processes for a decade.
The CFIDS Association has been my lifeline. And today’s announcement touched me deeply, partly because another writer, Laura Hillenbrand, has played a leading role.
With high hopes for the new “research institute without walls”–
Barbara Dimmick
I have had CFS for since 1986.I am 67 and I can’t put into words what this means to me.No one knows the long dark tunnel that CFS patients go through.Many times I just wanted to die,but I know God created me for His purpose and knowing we have people like you has made me want to go on.Thanks to James and Laura for their work and concern for the rest of us.God bless all the wonderful people out there that is working to help so many that can’t help themselves.
These news are uplifting and promising as well. Thank you Laura for your amazing generosity! I too join you in experiencing hope that patient with ME/CFS will soon have medical answers that will contribute to better care, physician knowledge and promising treatments leading to enhanced quality of life for ME/CFS patients.
A special “thank you” also goes to James York, because without across the board patient generosity, involvement, and commitment these scientific challenges cannot be answered effectively. We cannot wait any longer for government to do what needs to be done. We have to collaborate, band together and own our future. Through courage, perseverance and focus we will realize the future.
The teams from PANDORA and from the Coalition 4 ME/CFS wish the CAA and to all involved continuing success. The year 2012 is a year for DECISION indeed. The best is yet to come!
Marly Silverman, Founder, PANDORA – http://www.p-a-n-d-o-r-a.org
Co-founder Coalition4MECFS.org
We cheered when we read this issue of Research 1ST! We’re a husband and wife who’ve been disabled by CFIDS since 1992, and we are so grateful for the leadership of the CFIDS Association, the dedication of the researchers, and the generosity of fellow sufferers like Laura Hillenbrand and James York. We hope that 2012 will be a year defined by HOPE and HELP for all CFIDS sufferers!
Cathy and Tom Corbin
Co-Founders, Northeast KY CFIDS/FM Support Group
I am thrilled to hear of James York’s and Laura Hildebrand’s sizeable contributions to ME research. Although this research may not help me and others my age who have been sick nearly 3 decades, it will make a difference in the lives of those who follow me such as children (my son has a mild form) and grandchildren, etc. I am no less proud of those like myself who offer “the widow’s mite” so to speak. They, like myself, have reached a point in life where this disease has taken our resources or is taking them away as we speak.
I hope to see better patient services some day as well. They are desperately needed for far too many in the country that helps so many… but us.
Nancy Henson, Editor
Charlotte, NC Support Group E-Newsletter
I too am with happy tears reading this incredibly uplifting and positive news! The debilitating fatigue is hard enough to endure on top of the pain and cognitive challenges I have had in the last 10 years. It has only been a little over a year that I have understood *why* all of this has been happening. That there really ARE physical reasons why I suffer with unbearable intolerance to noise and light. That I’m not just overly quirky and severely broken in some way.
It is with CFIDS and Reasearch1st that I am not holding my breath so much with hope for a cure. Or at least better pain medication with less horrible side effects!
Thank you from the bottom of my heart for doing what you do for so many of us without a voice where it really counts.
Shannon in the GTA
Kudos to Kim, Suzanne, Lauren, James, and everyone who contributed, worked on, or otherwise supported this effort. Since the WPI train wreck, it has been hard to hold onto the hope of real, meaningful progress. You’ve outdone yourselves. Thank you for getting us back on track!
How Amazing can this be! The “Research Insitute Without Walls!!” Big huge thanks to you Laura for your major contribution, ongoing courage and committment. No doubt, this has allowed us to turn an important corner towards the ultimate discovery of the diagnosis, treatment and cure of CFS/ME, this life-draining disease. And a huge thank you to James York-you were the first!! Kudos to the CFIDS Association. Thanks to everyone!
Ellen Beldock-Bongard
South Forida
This is very exciting news. I am one of the oldies who have been around for a very long time. I was first diagnosed by Dr. Jim Jones, who was at National Jewish Hosp. in Denver in the 80′s. He told me with rest I could get better. Not cured!!!I was a single parent and I had to push through taking care of my children and working with this illness. They are successful grown adults and I am not sure they ever could understand my level of incapacity. Marley Silverman and I had a dream to work as hard as possible to do what we could for the community. After a few years, I had to pull out and let her take the lead. Thanks to those who have spoken out and have brought funds to help the cause. Bonnie Meyers
I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFS and HIV-NEGATIVE AIDS are basically the same mysterious immune disorder.