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Day at Philadelphia Zoo Supports Dystonia Research for a Cure

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3rd Annual Dystonia Zoo Walk Takes Place Sept 22; Brain Disorder is Little-Known But Surprisingly Common

PHILADELPHIA - EntSun -- The City of Brotherly Love is one of 13 cities to host a Dystonia Zoo Walk in 2019. The purpose of the event is to raise awareness of dystonia, a little-known but surprisingly common neurological disorder. Proceeds benefit the Dystonia Medical Research Foundation. National Sponsors include Allergan, Merz Neurosciences, and Ipsen.

Dystonia is characterized by extreme, often painful, involuntary muscle contractions that result in twisting, repetitive muscle movements and abnormal postures of the body and limbs. Common signs include twisting or abnormal movements of the head and neck, excessive blinking, a breathy or choking voice, hand cramps, or a twisted foot. Estimates suggest 250,000 Americans are affected, with one third of them being children.

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WHEN: Sunday, September 22, 2019. Registration opens at 8:00 AM. Event begins at 9:30 AM.

WHERE: Philadelphia Zoo, 3400 W. Girard Avenue, Philadelphia PA 19104.

WHO: The Zoo Walk is organized by local volunteers. Janice and Len Nachbar are longtime dystonia advocates on behalf of their adult daughter and Philadelphia resident, Joanna Manusov. Manusov's dystonia is so severe that she lives at Inglis house, a nursing home for adults with physical disabilities. She has lost the ability to talk and eat, breathes through a tracheostomy tube, is nourished through a feeding tube, and uses a wheelchair for mobility. Several of Ms. Manusov's friends from Inglis House will be in attendance to show their support, despite their own disabilities and mobility challenges requiring wheelchairs. The Nachbar/Manusov family has traveled to Washington, DC to advocate to Congress on behalf of the dystonia community, and organized dystonia support groups in Philadelphia and Freehold, NJ.

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Raman Patel of West Chester, PA is affected by cervical dystonia, characterized by extreme, involuntary muscle spasms in the neck. Cervical dystonia causes twisting movements and fixed positions of the head as well as persistent pain. Mr. Patel runs a local dystonia support group.

The Dystonia Medical Research Foundation 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.

MEDIA: For more information, contact Janice or Len Nachbar at greaterphildystonia@gmail.com or 732-547-3322. Event info also available at: https://philadelphiadystoniazoowalk.swell.gives/

Jessica Feeley

Source: Dystonia Medical Research Foundation
Filed Under: Event

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