1st Ever Nashua Dystance4Dystonia Walk Raises Awareness & Research Funds

6/4/18

Congratulations to Amanda Sleeper and her supporters for a very successful first-ever Nashua, NH Dystance4Dystonia Walk this weekend at Mine Falls Park. The event is estimated to have raised $2,000, and donations continue to come in. The Telegraph covered the event.

Amanda has organized multiple walks in support of DMRF in nearby Massachusetts.


The Nashua Dystance4Dystonia Walk organizer Amanda Sleeper pictured with just a few of the walk attendees.
 

Amanda was diagnosed with dystonia in her early 20s, after years of misdiagnosis. She experienced painful, involuntary muscle spasms in her hands, feet, jaw, and neck—at times so severe she dislocated her shoulder joint. Her doctors recommended deep brain stimulation surgery.

Just months after delivering her first child, Sleeper began the deep brain stimulation process. The procedure involved surgically implanting electrodes in her brain and a battery-powered stimulator in her chest wall. The treatment is continually monitored and adjusted by a remote device that controls the electrical stimulation to the brain. The procedure was successful. The pain and symptoms were reduced dramatically. Sleeper has since experienced a rollercoaster of setbacks and comebacks, including a life-threatening infection that required the procedure to be reversed and redone.

Because dystonia is not better known, the symptoms are frequently misdiagnosed, often mistaken for mental illness, intoxication, or poor social skills. 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 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) 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.

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The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.