Dystonia Awareness Month is marked by events throughout the country to bring visibility to dystonia and raise funds for medical research toward a cure. This double-header weekend included the 7th Annual Cincinnati Dystonia Zoo Walk on September 21 and the 3rd Annual Philadelphia Dystonia Zoo Walk on September 22.
Thirteen Dystonia Zoo Walks are expected to raise $300,000 this year. Dystonia Zoo Walks have cumulatively raised $1.3 million in support of the Dystonia Medical Research Foundation’s mission to find a dystonia sure and offer programs for patients and families. National Sponsors include Allergan, Merz Neurosciences, and Ipsen.
The Cincinnati Dystonia Zoo walk was founded by DMRF Community Leadership Council Member Melissa Phelps on behalf of her young daughters Olivia and Madison. The girls were born with tyrosine hydroxylase deficiency, a rare metabolic disease that causes generalized dystonia. This year’s event organizing committee also included Ann Falci, whose teenage daughter Marianne was diagnosed with dystonia at age 10 after four years of seeking answers. Special guests at the event included members of the movement disorders teams at University of Cincinnati Medical Center and Cincinnati’s Children’s Hospital. Neurologist and DMRF Clinical Fellow Dr. Abhimanyu Mahajan provided greetings. More than 400 people were in attendance this year.
The Philadelphia Dystonia Zoo Walk was organized by leaders of area dystonia support groups. Janice and Len Nachbar are longtime DMRF supporters and loyal dystonia advocates on behalf of their adult daughter, Joanna Manusov. The Nachbars lead dystonia support groups in Philadelphia and Freehold, New Jersey. Raman Patel leads the Southeast Pennsylvania Support Group despite himself living with cervical dystonia. Philadelphia Mayor Jim Kenney provided a Dystonia Awareness Proclamation in recognition of the event, and Councilmember Jannie L. Blackwell attended to present a dystonia awareness proclamation on behalf of the City Council. 400 people were in attendance.
Upcoming Dystonia Zoo Walks are scheduled in Los Angeles and Toledo.
Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest that 70% of patients are misdiagnosed prior to a dystonia diagnosis.
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)