"Not Rags to Riches, Able to Disabled"

SHREVEPORT, La. - March 23, 2018 - PRLog -- "I know what it's like to live a normal life and have it taken away," says Rachael Mathews of Haughton, Louisiana who earned the Dystonia Medical Research Foundation's Douglas Kramer Young Advocate Award. "I worked, went to college, and dreamed of living on my own. My story is not one of rags to riches, but from able to disabled." Mathews joined 70 volunteers on Capitol Hill, March 19-20, to advocate on behalf of dystonia, the disabling brain disorder that began suddenly in her 20s. Dystonia affects no fewer than 250,000 Americans including Robert Kennedy, Jr., hip hop icon Darryl "MC" McDaniels, and cartoonist Scott Adams. Every year, volunteers gather in Washington to educate Members of Congress about dystonia and speak out on patient issues, namely federal research funding through the National Institutes of Health and Department of Defense. Mathews is especially passionate about urging legislators to include dystonia as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program. Treatment options for dystonia are limited, so advocating for patient access and affordability are also policy priorities.

Individuals affected by dystonia struggle against their own bodies to walk, sit, eat, write, and/or speak. The nervous system is hijacked by chaotic signals that instruct muscles to contract excessively, causing involuntary, uncontrollable movements and abnormal postures in the faces, body, and limbs. Mathews has sustained 17 jaw dislocations and over a dozen cracked teeth due to the powerful muscle contractions. There are times she is unable to walk or speak.

"The contractions pull so hard I'd swear my bones are breaking," says Mathews. "When my disease started, I hid and hated when someone noticed my condition. I had two choices: hide or face the world and try to make a difference. I choose to make a difference as a dystonia advocate."

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. The vast majority of cases are not life-threatening. There is not yet a cure, and though treatments exist there is no therapy that benefits even a majority of patients.

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