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Patients and Families Unite Online to Raise Awareness and Research Funds for Little-Known Brain Disorder
CHICAGO - illiNews -- The Dystonia Medical Research Foundation (DMRF) is hosting the second Virtual Dystonia Zoo Day on Saturday, September 25, 2021. The dystonia community is uniting online for a national day of action to boost dystonia awareness and raise funds for urgently-needed medical research. More than 2,500 people, representing all 50 states, are expected to participate. National Sponsors are Allergan, an AbbVie Company; Merz; Ipsen; and Revance.
An Olympic-style Dystonia Zoo Day torch is traveling virtually across the country, landing in a new city each day, throughout the month of September leading up to the event date. The event live stream begins at 11:00 AM Central Time (USA) with DMRF President Art Kessler and guests. Scheduled sessions include zoo keeper chats with Toledo Zoo & Aquarium and Como Park Zoo, appearances by puppet Lolly Lardpop performed by Leslie Carrara-Rudolph, inspiring stories from DMRF Board Member Jon Davis plus DMRF supporter Stacey Steinmetz and her son Daniel moderated by Julia Wall of Henry Ford Health System, an exercise demonstration with physical therapists Drs. Chelsea Richardson and Lincoln Beal of re+active therapy & wellness studio, and an adapted dance party led by Impressions Dance Academy Dance Team.
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Signing up for the event is free and participants can support the DMRF by purchasing an event t-shirt or making a donation. Team donations are eligible to be matched a generous anonymous donor.
Dystonia is a chronic, often disabling, brain disorder marked by extreme, involuntary muscle contractions that cause abnormal body movements and postures. Common signs include abnormal movements of the head and neck, excessive blinking, a breathy or choked voice, hand cramps, or a twisted foot. Because dystonia may alter the subtle cues of natural body language, symptoms are sometimes mistaken in social situations for behavioral disturbance, substance abuse, or bad manners. Dystonia impacts people of all ages and backgrounds. There is currently no cure, and though treatments exist there is no single therapy that benefits even a majority of patients.
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The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. Founded in 1976, the DMRF mission is to advance research toward improved treatments and a cure, promote education and awareness, and provide support resources to affected individuals and families. The DMRF can be reached at www.dystonia-foundation org or 800-377-DYST (3978).
An Olympic-style Dystonia Zoo Day torch is traveling virtually across the country, landing in a new city each day, throughout the month of September leading up to the event date. The event live stream begins at 11:00 AM Central Time (USA) with DMRF President Art Kessler and guests. Scheduled sessions include zoo keeper chats with Toledo Zoo & Aquarium and Como Park Zoo, appearances by puppet Lolly Lardpop performed by Leslie Carrara-Rudolph, inspiring stories from DMRF Board Member Jon Davis plus DMRF supporter Stacey Steinmetz and her son Daniel moderated by Julia Wall of Henry Ford Health System, an exercise demonstration with physical therapists Drs. Chelsea Richardson and Lincoln Beal of re+active therapy & wellness studio, and an adapted dance party led by Impressions Dance Academy Dance Team.
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Signing up for the event is free and participants can support the DMRF by purchasing an event t-shirt or making a donation. Team donations are eligible to be matched a generous anonymous donor.
Dystonia is a chronic, often disabling, brain disorder marked by extreme, involuntary muscle contractions that cause abnormal body movements and postures. Common signs include abnormal movements of the head and neck, excessive blinking, a breathy or choked voice, hand cramps, or a twisted foot. Because dystonia may alter the subtle cues of natural body language, symptoms are sometimes mistaken in social situations for behavioral disturbance, substance abuse, or bad manners. Dystonia impacts people of all ages and backgrounds. There is currently no cure, and though treatments exist there is no single therapy that benefits even a majority of patients.
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The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. Founded in 1976, the DMRF mission is to advance research toward improved treatments and a cure, promote education and awareness, and provide support resources to affected individuals and families. The DMRF can be reached at www.dystonia-foundation org or 800-377-DYST (3978).
Source: Dystonia Medical Research Foundation
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