The CFIDS Association of America Breaks Ground on Its 'Institute Without Walls' to Transform Chronic Fatigue Syndrome Research
Posted on February 23, 2012 at 07:00 AM EST
Association-funded research will form a pipeline to effective treatment for CFS
CHARLOTTE, N.C., Feb. 23, 2012 /PRNewswire/ -- The CFIDS Association of America today announces new additions to its comprehensive research initiative to advance objective diagnosis and effective treatment of chronic fatigue syndrome (CFS): five new grant awards, two new projects using resources from a central biobank and curation of a biomarker "hit list" to guide future research. The new investments total $2 million.
"Our 'research institute without walls' vision becomes a reality today with the tightly integrated projects led by experts in diverse disciplines," says CEO Kimberly McCleary. "Rather than expending precious funds - and time - to construct a bricks-and-mortar facility, we have attracted top institutions to put their best minds to work immediately. We function as director and connector, networking carefully selected projects, guiding progress and closely monitoring performance at every step."
"We're building a pipeline to effective treatment that includes objective means to diagnose and subtype CFS," says Suzanne D. Vernon, Ph.D., the Association's scientific director. "These eight projects extend an initiative begun in 2008 to overcome the 'one and done' type studies that have stymied progress in patient care." Vernon, a microbiologist with more than 15 years of experience in CFS research, directs the Association's research program.
Five new grants build on past discoveries and explore new scientific terrain:
In addition to these grants, the Association announces two new collaborations through its SolveCFS BioBank, an integrated patient registry and biorepository that houses extensive standardized medical information and biological samples from individuals diagnosed with CFS and healthy controls:
The Association will also work in partnership with start-up venture LogosOmix to develop a biomarker "hit list" for CFS based on the product of a 2009 - 2010 grant to New York University that created a knowledgebase of the CFS literature and text-mining tools.
"These strategically aligned projects transform how research by patient-supported organizations is done. No longer are we simply passive sponsors; we are true partners," states Vernon.
In 2011, the Association established The Catalyst Fund to attract support for its research program. "In science, 'positive' catalysts speed a particular reaction. We're deeply grateful to nearly 2,000 individuals, foundations and companies who became catalysts through donations both large and small," says McCleary. She and Vernon will outline the "research institute without walls" strategy, describe the projects and announce a $250,000 gift from best-selling author Laura Hillenbrand at an invitation-only Catalyst Fund event this evening in Charlotte.
About The CFIDS Association of America
The Association's mission is to make CFS widely understood, diagnosable, curable and preventable. Our strategy is to stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. Second only to the federal government in funding initiatives for CFS, since 1987 the Association has invested $30.4 million in initiatives to end the life-altering disability, stigma and isolation of CFS. For information and resources for patients, family members, caregivers, support groups, media professionals, the general public and health care professionals, visit www.research1st.com or www.cfids.org.
Also known as chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis (ME) or ME/CFS, CFS is a complex illness that results in a constellation of debilitating symptoms, including incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), sleep difficulties and problems with concentration and short-term memory. It's also accompanied by flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat and headaches. The hallmark of CFS is post-exertional relapse, a worsening of symptoms following even minor physical or mental exertion that persists for days or weeks.
SOURCE The CFIDS Association of America, Inc.
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