Day at Zoo Supports Dystonia Research for a Cure
2nd Annual Philadelphia Dystonia Zoo Walk Takes Place Sept 30; Brain Disorder is Little-Known but Surprisingly Common
WHEN: Sunday, September 30, 2018. Registration opens at 8:00 AM. Event begins at 9:30 AM. Rain or shine.
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. Ms. Manusov's dystonia is so severe it causes rigid, muscle spasms in virtually every muscle on her petite frame. She has a 5lb service dog named Nicki who anticipates when the symptoms are escalating and sit in her lap to calm her. The Nachbar/Manusov family have traveled to Washington, DC to advocate to Congress on behalf of the dystonia community, and organized dystonia support groups in Freehold, NJ and Philadelphia.
Raman Patel of West Chester, PA is affected by cervical dystonia, characterized by extreme, involuntary muscles spasms in the neck (along the cervical spine). Cervical dystonia causes twisting movements and fixed positions of the head as well as chronic pain. The mainstay of treatment is regular injections of botulinum neurotoxin ("Botox") into the neck muscles. Mr. Patel runs a local dystonia support group.
Pedro Gonzalez-Alegre, MD, PhD, dystonia expert and Co-Director of the Parkinson's Disease and Movement Disorders Center at the Pennsylvania Hospital is a guest speaker at the Zoo Walk.
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 information and to schedule interviews, contact Janice Nachbar at janicenachbar@