DMRF Board Member Holds 2nd Annual Dystonia Bronx Zoo Walk Weeks after Deep Brain Stimulation

Pamela Sloate Gathers 400+ Supporters to Raise Awareness & Research Funds

9/19/16

It has been less than a month since Pamela Sloate of New York lay awake in the operating room as neurosurgeons implanted an electrode deep in her brain to treat her generalized dystonia. Even major brain surgery could not distract her from preparations for yesterday’s 2nd Annual Dystonia Bronx Zoo Walk which attracted more than 400 people, representing 20 teams. Zoo Walks across the country are raising public awareness of dystonia and research funds to benefit the DMRF. National Dystonia Zoo Walk sponsors include Allergan and Merz. Local sponsorships for the Bronx Zoo Walk provided by Mount Sinai Hospital, US WorldMeds, Feinstein Institute for Medical Research/Northwell Health, Medtronic, Fidelis Care, InVite Health, Mount Sinai Beth Israel, Rutgers/Robert Wood Johnson Medical School, Rx Plus Pharmacy, WellCare Health Plans, and Columbia University Medical Center.

"The Bronx Zoo Walk is a shining example of the spirit of our community and offered an incredible display of unity with dystonia patients, doctors, researchers, medical staff, and our friends and families, joining together to raise awareness and celebrate our hope for a cure," says Sloate, who developed dystonia in childhood. "I'm incredibly grateful to our amazing sponsors for their support."

Teams at the Bronx Zoo Walk represented local families impacted by dystonia as well as prominent healthcare institutions: Mount Sinai Hospital, Mount Sinai Beth Israel, ~~Feinstein Institute for Medical Research/Northwell Health, Robert Wood Johnson Medical School, Columbia University Medical Center, and NewYork-Presbyterian/Weill Cornell Medical Center. Movement disorder neurologist Harini Sarva, MD of Cornell, who previously earned a DMRF Clinical Fellowship award, spoke at the event.  

Dystonia is the third most common movement disorder, characterized by uncontrollable muscle spasms that twist the body into involuntary movements and painful postures. There is not yet a cure. Treatment options include oral medications, botulinum toxin injections, and neurosurgical procedures such as deep brain stimulation.

Sloate has lived with generalized dystonia affecting her limbs and speech for 40+ years. Her involuntary movements complicate the simplest tasks, from speaking on the phone to walking across a room. This week she will have a second brain surgery and then, in a third procedure, neurosurgeons will implant neurostimulators in her chest and connect them to the electrodes in her brain. It may take up to a year for the benefits of deep brain stimulation  therapy to be fully realized. In addition to serving on the DMRF Board of Directors, Sloate leads a dystonia support group at Mount Sinai Beth Israel and authors the blog, Chronicles Of A Dystonia Muse.

The Dystonia Medical Research Foundation (DMRF) is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and 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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