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Haverhill Man Selected to Represent Dystonia Community to Congress

Dystonia Advocates Gather in Washington to Bring Visibility to Little-Known Brain Disorder

HAVERHILL, Mass. - March 2, 2017 - Rezul -- Scott Wood of Haverhill, MA will join 100+ volunteers from across the country on Capitol Hill, March 21-22, to advocate on behalf of dystonia, a disabling brain disorder that affects no fewer than 250,000 Americans. Wood is one of four individuals to earn a 2017 Douglas Kramer Young Advocate Award from the Dystonia Medical Research Foundation. The award recognizes exceptional volunteers who are giving voice to their stories through advocacy. Every year, volunteers gather in Washington for meetings with Members of Congress to educate legislators about dystonia and speak out on issues that affect the community, namely federal research funding, treatment access, and health care reform.

Individuals who are affected by dystonia struggle against their own bodies to walk, write, sit, eat, and/or speak. The nervous system is hijacked by chaotic signals that instruct muscles to contract excessively, causing involuntary, uncontrollable movements and sustained, abnormal postures in the body and limbs.
Wood was inspired to action when a family member was diagnosed with dystonia several years after developing Parkinson's disease. "I have seen firsthand how tough dystonia can be to deal with. This cause is near and dear to my heart," says Wood. "This is a terrible disease that we must increase awareness for and find a way to increase research funding to find different treatments and ultimately a cure."

Wood has long been involved in advocating on behalf of Parkinson's disease patients, partnering with the National Parkinson Disease Foundation and Michael J Fox Foundation.

Because dystonia is not better known, the symptoms are frequently mistaken for mental illness, intoxication, or bad manners. Patients often suffer profound social anxiety and/or depression, frequently withdrawing from social situations. Despite frequent misdiagnosis, dystonia is more common than Huntington's disease, muscular dystrophy, and Lou Gehrig's disease (ALS). There are multiple forms of dystonia that impact people of all ages and backgrounds. There is currently no cure, and though treatments exist there is no single therapy that benefits even a majority of patients.

The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. The DMRF can be reached at 800-377-3978, dystonia@dystonia-foundation.org, or https://www.dystonia-foundation.org/

Contact
Jessica Feeley
***@dystonia-foundation.org


Source: Dystonia Medical Research Foundation

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