New Cure Duchenne Research Index
August 11, 2010 by CureDuchenne
Filed under Research Articles
CURE DUCHENNE ANNOUNCES FREE ACCESS TO THE CURE DUCHENNE RESEARCH INDEX
CureDuchenne completes Duchenne Muscular Dystrophy Advisory Board with stem cell specialist and simultaneously announces the release of a comprehensive DMD research index
Click here to see the new Research Index
(also found under the Research Heading)
CureDuchenne, a nonprofit dedicated to moving the needle on Duchenne Muscular Dystrophy (DMD) research in order to create real change for this generation of boys affected by the disease, today announced the completion and release of the CureDuchenne Index, the DMD community’s first end-to-end index documenting all DMD research currently taking place around the globe.
DMD is the leading genetic killer of children and affects 1 in 3,500 boys. DMD is usually diagnosed by the age of five, the boys are often relegated to a wheelchair by age 12, and may be completely paralyzed by their late teens. Historically, most patients with DMD do not live to see adulthood. CureDuchenne’s mission of funding research projects on the cusp of becoming human clinical trials in an effort to create real change in treatment options now, has established them a leader in the scientific fight against DMD.
The public, DMD organizations and research communities may link to the CureDuchenne Research Index: http://www.cureduchenne.org/research/research-index/. The CureDuchenne Research Index is intended to serve as a resource for parents, advocates, scientists and fundraisers as they work together toward a cure for DMD.
“So much important work is taking place around the world and we felt there wasn’t one place to go where you could capture it all,” said CureDuchenne co-founder Debra Miller. “Working collaboratively is the only way we’ll make a dent in this disease and I wanted CureDuchenne to extend that hand. This index has been invaluable to us and I hope that others will also benefit from being able to see the big picture around DMD research.”
The completion of the CureDuchenne Index aligns with the selection of an additional scientist for CureDuchenne’s world-class scientific advisory board. Designed with each segment of DMD research in mind, CureDuchenne has augmented their board with the addition of stem cell research expert Thomas A. Rando, M.D., PhD of Stanford University. Rando, a professor in the Department of Neurology and Neurological Sciences at Stanford University School of Medicine, Chief of the Neurology Service at the VA Palo Alto Health Care System, Deputy Director of the Stanford Center on Longevity (SCL) and graduate of Harvard Medical School, has worked extensively with stem cells to create muscle regeneration and growth, a key factor in the fight against DMD.
“Joining the CureDuchenne advisory board is synergistic with the work I’ve been doing with muscle growth and regeneration,” said Rando. “The boys that face DMD have a big challenge in front of them and as scientists we want to work as quickly as possible toward a cure. CureDuchenne is the kind of organization that identifies projects that have a real chance of being successful and as a result, they’ve helped our field make great strides. I’m honored to be included among the top-notch scientists on their advisory board.”
CureDuchenne’s scientific advisory board works with the organization to determine what projects around the world are closest to the human clinical trial phase and the most viable for funding. To date, CureDuchenne has provided millions of dollars in funding for DMD research around the world and has been integral in bringing 3 treatment options to the human clinical trial phase.
The CureDuchenne advisory board will meet next at the 2nd Annual DMD Summit in Orange County, California. The three-day Summit, set to take place January 27-29, 2011, will include closed session discussions, research project evaluation and a breakfast event where each participant will report on the findings from the weekend. The breakfast will be attended by DMD parents, advocates and supporters.
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NIAMS and NINDS Announce Multicenter Award for Duchenne Muscular Dystrophy Research
May 6, 2010 by CureDuchenne
Filed under Research Articles
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Institute of Neurological Disorders and Stroke (NINDS) recently announced they are launching a five-year, $7.5 million natural history study of Duchenne muscular dystrophy (DMD).
Please read the rest of the article announcement here:
NIAMS and NINDS Announce Multicenter Award for Duchenne Muscular Dystrophy Research
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Diagnosis and Management of Duchenne Muscular Dystrophy
December 7, 2009 by CureDuchenne
Filed under Research Articles
Please take some time to read this important document regarding the diagnosis and management of Duchenne Muscular Dystrophy (DMD). As the document itself states, “although guidelines are available for various aspects of DMD, comprehensive clinical care recommendations do not exist. The US Centers for Disease Control and Prevention selected 84 clinicians to develop care recommendations using the RAND Corporation–University of California Los Angeles Appropriateness Method.
These recommendations, presented in two parts, are intended for the wide range of practitioners who care for individuals with DMD.”
Click here to read:
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