Throughout the year, volunteers across the country have organized events to bring visibility to dystonia and raise funds for urgently needed medical research toward a cure. 13 Dystonia Zoo Walks have drawn 5,000+ participants nationally and are on track to raise $300,000 in support of the Dystonia Medical Research Foundation. National Sponsors are Allergan and Merz Neurosciences. Ipsen also supported all events in 2019.
The 2nd Dystonia Day at Phoenix Zoo took place on November 2. DMRF supporter Mary Stone organized the event to promote awareness and to bring together individuals and families affected by dystonia in the local area. Mary is diagnosed with cervical dystonia, and experiences powerful, uncontrollable muscle spasms in her neck. She is a member of the DMRF’s Phoenix Dystonia Support Group.
The 1st Los Angeles Dystonia Zoo Walk took place November 9. The event was organized by Janis Eiler and Jacquelyn Coello. Both women are members of the Los Angeles Dystonia Support Group. Movement disorder specialist Dr. Michele Tagliati of Cedars Sinai Medical Center provided remarks.
Dates and locations for 2020 events are being planned now. To be informed of DMRF events and meetings in your area, sign up for email notifications.
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).