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>>>>> Help ME Circle <<<<
>>>> 15 September 2011 <<<<
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Reference:
*Applying Venture Philanthropy to CFS*
Help ME Circle, 15 September 2011
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CFI Chronic Fatigue Initiative
FOR IMMEDIATE RELEASE
Thursday, September 15, 2011
Contact: Courtney Woo (Edelman),
212-704-8265
courtney.woo@edelman.com
NEW INITIATIVE FUELS FIGHT
AGAINST CHRONIC FATIGUE SYNDROME
Partnership among leading researchers seeks
to improve understanding of controversial
disease
New York, NY =96 The newly formed Chronic Fatigue
Initiative, Inc., a nonprofit organization, today announced
a novel collaboration that brings together medical
experts from the world's leading research institutions,
including Columbia, Harvard, Stanford and Duke
Universities, to identify the causes and treatment of
Chronic Fatigue Syndrome (CFS), a debilitating illness
that affects more than one million people in the United
States. The initiative=92s comprehensive strategy includes
funding for an epidemiology study, already underway; a
well-characterized cohort recruitment; a pathogen
discovery and pathogenesis study; and a Mechanism of
Illness grant program that will fund additional research.
The exact cause of CFS =96 which afflicts patients with
overwhelming fatigue and cognitive difficulty =96 has
eluded researchers since it was first identified in 1985.
Chronic Fatigue Initiative, headquartered in New York
City and funded by the Hutchins Family Foundation,
seeks to jumpstart and to sustain critical research by
providing investigators and academic institutions with
access to funds and a mechanism to ease collaborative
study, enabling the best minds to drive new solutions.
The Chronic Fatigue Initiative-funded Epidemiology
Project, led by the Harvard School of Public Health,
aims to identify a large sample of men and women with
CFS and to study their environmental exposures as well
as their blood samples from before and after the time
they became ill. The study will draw on epidemiologic
data from three separate HSPH studies, including more
than 20 years of longitudinal biosamples from nurses
and other health professionals, providing invaluable
clues to environmental as well as biological risk factors
for CFS.
*The Nurses and Health Professionals cohorts provide a
unique setting for the investigation of CFS, because the
participants in these investigations have provided
detailed information on their lifestyle and medical history
longitudinally for over two or three decades,* said
Alberto Ascherio, M.D., professor of epidemiology and
nutrition at HSPH and leader of the Chronic Fatigue
Initiative-sponsored epidemiology study. *A large
proportion of these participants have provided blood
samples, in some cases before the onset of CFS. We
expect that this investigation will provide new insights on
possible risk factors for this potentially debilitating
condition.*
Chronic Fatigue Initiative will also recruit a
well-characterized cohort of CFS patients =96 200
subjects who truly have the disease plus 200 healthy
controls nationwide =96 from whom biologic samples and
clinical data will be collected, ultimately enabling the
discovery of pathogenic pathways. The biologic
samples, collected by clinicians from selected sites
around the country, will be stored in a central bio-bank
located at Duke University. The bio-bank will be
accessible to researchers around the world for future
study
*A database administered at Harvard Medical School will
link clinical data from the cohort to the biologic samples
in the bio-bank. Together, these resources will form a
unique foundation for the discovery of pathogens and
pathogenic mechanisms in CFS and the identification of
patients who will most likely respond to specific
treatments,* said Nancy Klimas, M.D., professor of
medicine, psychology, microbiology and immunology at
the University of Miami School of Medicine and the
principal investigator for cohort recruitment.
Following cohort recruitment, creation of the bio-bank
and population of the database, W. Ian Lipkin, M.D., a
prominent virologist and director of the Center for
Infection and Immunity at Columbia University, and
Mady Hornig, M.D., principal investigator for pathogen
discovery and pathogenesis at the Center for Infection
and Immunity, will lead a pathogenesis study that seeks
to uncover novel viruses implicated in the disease. The
team will use new techniques that allow up to 20
pathogens to be searched simultaneously.
*We are eager to join Chronic Fatigue Initiative in
bringing the full measure of our resources to bear on the
challenges of this debilitating syndrome that robs
individuals in the prime of their productive years,* said
Dr. Lipkin.
Chronic Fatigue Initiative will also offer grants, housed
under the Mechanism of Illness program, to fund new
research guided by five or six general hypotheses
formed by a scientific advisory board of leading
scientists and clinicians.
The first of many grants to be funded by the Mechanism
of Illness program is the Hutchins Family Fellow for
Infectious Disease. This year=92s inaugural recipient,
Claire Gordon, M.D., will work under the direction of
Scott M. Hammer, M.D., professor of epidemiology and
chief of the Division of Infectious Diseases at the
NewYork-Presbyterian/Columbia University Medical
Center. The pair will collaborate closely with Drs. Lipkin
and Hornig on the pathogen discovery and pathogenesis
study.
*The gift establishing the Hutchins Family Fellow in
Infectious Diseases as part of the Chronic Fatigue
Initiative is visionary,* said Dr. Hammer. *Training
dedicated, talented young physicians in pathogen
discovery and state-of-the-art care and treatment of
related patient populations will produce advances that
will ultimately lead to defining and defeating chronic
fatigue syndrome and the morbidity it causes.*
*As more policy makers and industry experts grasp the
full scale of CFS, we believe they will more likely
respond in kind and increase efforts to promote research
surrounding the disease,* says Scott A. Carlson,
Chronic Fatigue Initiative executive director. *By
simultaneously seeking to understand the causes of the
illness and the breadth of our population affected,
Chronic Fatigue Initiative aims to build awareness and
reduce social stigma connected to CFS, ultimately
improving patient lives in a comprehensive way.*
For more information, please visit www.CFInitiative.org or
contact info@CFInitiative.org.
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About Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is a debilitating disease
characterized by overwhelming fatigue often aggravated
by physical or mental exertion. It does not improve with
rest. The exact causes of CFS have yet to be identified
and diagnostic tests do not exist. According to the
CDC, symptoms for diagnosis must include severe
fatigue along with at least four additional symptoms
ranging from cognitive difficulty to sore throat and
muscle pain. A patient is diagnosed only once all other
treatable conditions are ruled out and symptoms have
persisted for more than six consecutive months. In
many cases, these symptoms persist for years or
decades.
CFS affects more than one million people in the United
States =96 more than multiple sclerosis, lupus, or lung
cancer, according to the U.S. Centers for Disease
Control and Prevention.
About the Chronic Fatigue Initiative
Chronic Fatigue Initiative is a science-based 501(c)(3)
nonprofit organization fostering and supporting
collaboration among the world=92s leading medical
research, treatment and public health organizations in
understanding the causes, therapies and epidemiology
of Chronic Fatigue Syndrome.
Through a unique private funding strategy, Chronic
Fatigue Initiative brings together a variety of scientific
and academic partners to ensure that the best minds
can collaborate and drive new solutions. By
simultaneously seeking the causes and treatment of
CFS and leading research to understand the breadth of
the affected population, Chronic Fatigue Initiative aims
to build awareness, reduce social stigma connected to
the disease, and improve patient lives in a
comprehensive way.
Participating institutions include the Center for Infection
and Immunity at Columbia University, Harvard School of
Public Health, Stanford Medical School, Harvard
Medical School, Duke University, Brigham & Women=92s
Hospital, Massachusetts General Hospital, University of
Miami and University of Utah.
About the Hutchins Family Foundation
Chronic Fatigue Initiative is funded by the Hutchins
Family Foundation, a private family foundation that has
grant programs to expand research and community
initiatives in public policy, education and public health
throughout the United States.
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