DMRF Board Member Joins Peer Review of DOD Peer Reviewed Medical Research Program
Dystonia Medical Research Foundation (DMRF) Board Member and Support Leader Pamela Sloate was selected to serve as a Consumer Reviewer on a panel to review applications submitted for the Department of Defense (DOD) Peer Reviewed Medical Research Program. Pamela was nominated for participation in the program by the DMRF. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $278.7 million appropriated to the program by Congress for Fiscal Year 2016 will be spent on research covering 39 topic areas, including dystonia.
The DOD is increasingly receptive to funding dystonia research because of the connection to traumatic brain injury. The frequency of brain injury among military service members—and especially combat veterans of Iraq and Afghanistan—puts them at increased risk for dystonia. Volunteers representing the Dystonia Advocacy Network convene on Capitol Hill every spring to urge Congress to keep dystonia included in the DOD Peer Reviewed Medical Research Program for the next fiscal year. Thanks to these efforts, the DOD has made funding available to dystonia investigators every year since 2010.
Consumer reviewers represent the view of patients and family members in the DOD research review process. They provide comments on the impact of the presented research on issues including diagnosis, treatment, and quality of life. As an active dystonia advocate, Pamela said: “It was extremely rewarding to see the fruits of our efforts to include dystonia on the list of conditions eligible for funding under the Department of Defense Peer Reviewed Medical Research Program. I feel privileged to represent the dystonia community as a consumer reviewer.”
Colonel Wanda L. Salzer, MD, Director of the DOD Peer Reviewed Medical Research Program expressed her appreciation for the perspectives of the consumer advocates in the scientific review sessions: “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provide valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research.”
Pamela has lived with a generalized form of dystonia affecting her limbs and speech for 40+ years. She underwent deep brain stimulation surgery last year. In addition to serving as a legislative advocate, Pamela organizes the annual NYC/Bronx Dystonia Zoo Walk, leads a dystonia support group at New York’s Mount Sinai Beth Israel, is participating with her dog Ellie in this year's Dogs for Dystonia Virtual Walk, and authors a blog, Chronicles Of A Dystonia Muse.
Dystonia studies funded by the DOD have been led by the world’s top dystonia experts whose work represents the cutting edge of research on movement disorders and the fundamentals of human motor control. Total funding of dystonia studies to dates exceeds $6 million.
The Dystonia Advocacy Network (DAN) is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community. Dystonia Advocates are convening in Washington, DC on March 21-22, 2017. Click here to learn how you can participate in legislative advocacy to help keep dystonia included in the DOD’s Peer Reviewed Medical Research Program and educate Congress on dystonia.
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