Medical & Patient Communities Unite for Cure at Pittsburgh Dystonia Zoo Walk

9/26/18                                                                                            

On Sunday, September 23, Pittsburgh was the latest of 13 cities across the US to host a Dystonia Zoo Walk in 2018. The event was organized by members of the Western Pennsylvania Dystonia Support Group. When event co-organizer Ed Cwalinski had deep brain stimulation surgery 18 years ago, in a desperate attempt to control his relentless body spasms, he was the youngest person with dystonia to have the procedure. Co-organizer MaryRae Nee also underwent successful deep brain stimulation 16 years ago to control her severe dystonia. Chris Mack, Co-Host of the “The Fan Morning Show” on 93.7 Pittsburgh Sports Radio, and wife Tara Sorley assembled the highest earning Zoo Walk team in honor of their 5-year-old son Braden who suffers from dystonia. The Zoo Walk was preceded by Dystonia Day with the Pittsburgh Pirates at PNC Park on September 4.

This was the 5th Annual Pittsburgh Dystonia Zoo Walk, and Western Pennsylvania Dystonia Support Group Co-Leaders Ed Cwalinksi and MaryRae Nee were recognized for this special anniversary. Special guests included neurosurgeon Dr. Donald Whiting of Allegheny General Hospital, who performed Ed’s life-changing deep brain stimulation surgery.

The Pirates were among the event sponsors as well as Allergan, Ipsen, Merz Neurosciences, and US World Meds. Several area medical institutions supported the event including University of Pittsburgh Medical Center, HighMark Health, and Medtronic.

The Zoo Walk was preceded by Dystonia Day with the Pirates at PNC Park on September 4.

Dystonia Zoo Walks offer a “twist” on traditional charity walks with no required walking course or expectation other than enjoying a morning at the zoo connecting with others in the dystonia community and promoting awareness. More information about Dystonia Zoo Walks and additional DMRF events 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.

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