Providence, Rhode Island is the latest of 13 cities across the USA to host a Dystonia Zoo Walk in 2019. The event on September 14 was the fifth Dystonia Zoo Walk to take place in New England. The purpose of this community day at the zoo was to raise dystonia awareness and funds for medical research. Dystonia Zoo Walks are expected to draw 5,000+ participants nationally and raise $300,000 in support of the Dystonia Medical Research Foundation. National Sponsors are Allergan and Merz Neurosciences. Ipsen has also supported all events in 2019.
The Providence event organizing committee included longtime DMRF supporters Sue Baron, Beth Paolero, Paula Schneider, and Brian Smuda. Movement disorder specialist Maria Luisa Moro-de-Casillas, MD of Hartford Healthcare attended to thank participants and provide remarks.
Each member of the organizing committee has be personally impacted by dystonia. Sue’s 23-year-old son Bryan was diagnosed with dystonia in his teens, and the family established the first-ever dystonia support group in Rhode Island. Beth’s daughter Maddie, also in her 20s, uses a wheelchair for mobility, and has difficulty speaking and writing due to the severity of her dystonia symptoms. Paula was diagnosed with dystonia in 1990, at the height of her career in radio. Brian developed severe tardive dyskinesias from prescribed medications. All four patients have undergone a neurosurgical procedure called deep brain stimulation to treat the dystonia symptoms. September is Dystonia Awareness month.
The Dystonia Zoo Walk precedes an upcoming Dystonia Patient Education Program on Saturday, October 26, 2019 from 9:00 am – 12 Noon at the Providence Courtyard by Marriott, 32 Exchange Terrace, Providence, RI 02903. Featured medical speaker is movement disorder specialist Umer Akbar, MD of Rhode Island Hospital/Brown University. Dr. Akbar is a former DMRF Clinical Fellow. There will be additional presenters and continental breakfast is provided. The event is free and advance registration is requested.
Patient educational events are scheduled in additional cities throughout the fall.
Dystonia is a neurological movement disorder that causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest 250,000 Americans are affected. Although treatment options exist, there is not yet a cure.
For information about dystonia, treatments, support resources, and locating medical specialists, the Dystonia Medical Research Foundation (DMRF) can be reached at www.dystonia-foundation.org and 800-377-DYST (3978).