First-ever Providence “Dystance4Dystonia” Zoo Walk Draws 400+ Supporters

PROVIDENCE, R.I. - June 29, 2015 - PRLog -- On Saturday, June 27, more than 400 people gathered at Roger Williams Zoo for the first-ever Providence Dystance4Dystonia Zoo Walk. In communities across the country, Zoo Walks are raising public awareness and research funds for dystonia, a little-known neurological disorder. The Providence event raised nearly $20,000 to benefit the Dystonia Medical Research Foundation (DMRF).

“My family and I had the best day,” said event organizer Sue Baron of Smithfield whose 20-year-old son Bryan was diagnosed with dystonia in 2007. “We were so happy that so many people came out—it was truly a big deal to have them all there to promote dystonia awareness and to raise funds to help the DMRF find a cure.”

Dystonia is a chronic, often disabling, movement disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. There are numerous subtypes that affect people of all ages and backgrounds. Common signs include twisting or abnormal movements of the head and neck, excessive blinking, a breathy or choking voice, hand cramps, or a dragging foot.

Bryan was diagnosed with dystonia as a teenager in 2007. At the time, Sue and husband Cliff Baron had never heard of dystonia, let alone know anyone else who shared the diagnosis. Powerful muscle spasms had twisted Bryan’s frame so severely that he could not stand fully upright due to a 145 degree curvature in this spine. The following year Bryan had an invasive neurosurgical procedure called deep brain stimulation (DBS) at Massachusetts General Hospital. The DBS greatly controlled Bryan’s powerful dystonic spasms. The device setting must be adjusted regularly, and Bryan traveled to Boston for an appointment the day prior to the event.

Paula Schneider of Connecticut was a member of the Zoo Walk organizing committee: “It was an incredible day for families impacted by dystonia to come together, forget about the hardships of dystonia for a little while, and enjoy themselves—it was wonderful.” Paula was among the very first dystonia patients to undergo deep brain stimulation in the early 2000s. At the time, the procedure was primarily used to treat Parkinson’s disease and was slowly being used to treat severe dystonia that did not respond to more conservative therapies.
Additional Dystance4Dystonia Zoo Walks are scheduled in the coming months to take place in Michigan, Missouri, Ohio, New York, and Pennsylvania. More information is available at www.dystonia-foundation.org/events.

The Dystonia Medical Research Foundation (DMRF) is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families. The DMRF can be reached at 800-377-3978 or www.dystonia-foundation.org.