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San Antonio Resident Selected to Represent Dystonia Community to Congress

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

SAN ANTONIO - March 3, 2017 - Rezul -- Anneliese Ornelis of San Antonio 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. Ornelis is one of four individuals to earn a 2017 Douglas Kramer Young Advocate Award from the Dystonia Medical Research Foundation (DMRF). 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.

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Ornelis' husband Jason is diagnosed with cervical dystonia, which targets muscles in the neck. "His neck pain got worse, and his head started to turn to the left—it wouldn't go back. He described it as feeling stuck and that his neck wanted to snap off his shoulders," says Ornelis. "Luckily, we were referred to a wonderful neurologist with help from the DMRF and he has started mostly successful treatment. We've met people with all types of dystonia and are fierce advocates for the dystonia community."

The couple are avid runners and their dystonia awareness gear sparks conversation at every race they compete in. They have also organized running events to raise dystonia awareness and funds for medical research toward a cure, using their Facebook page "Running with Dystonia" to rally the tight-knit running community in support of their efforts. "We run with a group called IAAP, and they've hosted a fundraiser run for us in the past," says Ornelis. "The folks of IAAP have been there for us since the very beginning of the onset of cervical dystonia, and they've been a big influence on Jason to not give up on his goals regardless of the setbacks dystonia presents." Jason was named a 2016 Douglas Kramer Young Advocate.

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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 www.dystonia-foundation.org.

Jessica Feeley

Source: Dystonia Medical Research Foundation

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