Dystonia Awareness Month is underway, and volunteers across the country are hosting events to bring visibility to the disorder and raise funds for urgently needed medical research toward a cure.
The Pittsburgh Pirates welcomed members of the Western, Pennsylvania Dystonia Support Group for Dystonia Awareness Day at PNC Park, as a lead up to the 6th Annual Pittsburgh Dystonia Zoo Walk to take place on September 8. The Pittsburgh Zoo Walk is organized by a committee from the local support group. When event co-organizer Ed Cwalinski had deep brain stimulation surgery 19 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 deep brain stimulation 17 years ago to control her severe dystonia. Chris Mack, Co-Host of The Fan Morning Show on 93.7 The Fan, and spouse Tara Sorley are organizing a Zoo Walk team in honor of their 6-year-old son Braden who suffers from dystonia. Special guest speaker will be Mary Flaherty, DO, Neurologist with Allegheny Health Network. Platinum level event sponsors include Allergan, Merz Pharmaceuticals, and Ipsen.
Sheila Killham organizes an annual Dogs4Dystonia Dog Walk, now in its sixth year. This year’s event took place August 24 in Marion, Iowa. Sheila is a former veterinary technician whose career ended unexpectedly due to dystonia. The symptoms impact her speech, swallowing, and mobility. She started the East Central Iowa Corridor Dystonia Support Group to support others impacted by dystonia in the area. The event was covered by local news. Sponsors include Allergan and Merz Pharmaceuticals. Dawn Roth, owner of Pawsitive Paws Academy, is a member of the Dystonia Support Group and regular supporter of the event.
The 5th Annual St Louis Dystonia Zoo Walk took place August 25, organized by June Tritley on behalf of her sons, 12-year-old Scott and 9-year-old Quintyn. The boys were diagnosed with dystonia as toddlers and struggle daily with controlling the movements of their bodies. Guest speakers included Joel S. Perlmutter, MD, the Elliot H. Stein Family Professor of Neurology at Washington University School of Medicine in St. Louis. Perlmutter is Scientific Director of the Dystonia Medical Research Foundation and Co-Director of the Dystonia Coalition. Scott Norris, MD, Assistant Professor of Neurology and Assistant Professor of Radiology at Washington University School of Medicine, also participated. Sponsors included Allergan, Merz Pharmaceuticals, Ipsen, and US WorldMeds.
Upcoming dystonia events, including awareness events and educational meetings, are scheduled in Atlanta, Bronx/NYC, Cleveland, Chicago, Cincinnati, Denver, Detroit, Indianapolis, Los Angeles, Omaha, Pittsburgh, Philadelphia, Phoenix, Providence, and Toledo.
Grassroots volunteers are vital to bringing greater visibility to dystonia and supporting the global effort to better understand dystonia and develop new therapies to improve the lives of those affected.