The CFIDS Association of America’s research efforts have been nothing if not innovative since Suzanne Vernon took over the organizations research helm about five years ago. Dr. Vernon has ‘smushed’ (:)) separate research projects together to form multi-layered ones, funded efforts on Drug repurposing and cajoled researchers somehow into doing complete metabiome and epigenetic analyses all on quite limited funding.
The CAA has been adept at maximizing their limited resources but nowhere may they get more bang for their buck than in this years Sanofi Challenge. Last summer Sanofi Pharmaceuticals invited non profit and for profit organizations to come up with proposals demonstrating how they could effectively work together to improve health. Over a hundred proposals were submitted and when the dust settled two CFIDS Association proposals made it to the top four…You’ve gotta wonder what the odds of that are.
Now the CAA and its partnering organizations are getting $25,000 and the help of Sanofi mentors to further refine their proposals for the final round with rewards of $100,000 and $300,000 at stake. If my math is right one of the CAA proposals has at least a 50-50 chance of winning at least $100,000.
Let’s take a look at the two CFIDS Association proposals Sanofi thought so highly of…
Partnering to End Pain
The CAA, TMJ and Vulvodynia Association propose to develop a web-based patient registry for people with six chronic pain conditions (CFS/FM/IBS/TMJ/IC/endometriosis).
One of the big questions facing the pain and fatigue research communities is how similar these conditions are. By creating a standardized database containing everything from symptoms to test results this registry will help researchers to help determine just that.
The findings could have major ramifications. If studies find these disorders – which affect tens of millions of American’s and cost the economy hundreds of billions of dollars a year – have similar causes, they could set the stage for large, (very large), research efforts. (Can anyone say a Chronic Pain and Fatigue Institute at the NIH?). It’s hard to imagine this proposal not winning one of the top two prizes….
Registries for All Diseases
The CFIDS Association of America, the Genetic Alliance, the Inflammatory Breast Cancer Research Foundation and the National Psoriasis Foundation collaborated to create a patient registry to make it easier to develop clinical trials…something ME/CFS, of course, with its meager funding and historically low rate of clinical trials, vastly needs.
The CAA is up against some stiff competition; a proposal to develop an app to detect signs of Alzheimer’s earlier in the lifespan, and a tool for ‘real-time’ flu surveillance to promote better immunization. Even if it all ended now, they’ve already in a sense ‘won’, however; they and their partnering organizations have received $50,000 to refine their initiatives, they’ve developed valuable contacts at high levels and they’re displaying their efforts on a large stage. With a little luck they’ll make it into the big bucks as well.
They’ll present their proposals before the judges on Oct 29th and we’ll know on Nov 15th. In the meantime congratulations to the CAA for coming so far..