DMRF Events Unite Community Virtually & In-Person
In August, DMRF launched a series of dystonia awareness and community-building events, including the signature Dystonia Zoo Days. Dystonia Zoo Days were held in-person in eight cities plus the 3rd Virtual Dystonia Zoo Day which was livestreamed online. Volunteers hosted additional local meetings and events in the summer and fall.
DMRF support groups across the country hosted “Dystonia Strong” events to help the community re-connect after the social isolation of the Covid-19 pandemic. The new Dystonia Strong campaign highlights the strength and resilience of individuals with dystonia and their families while empowering the community to promote awareness. Support groups that participated include the Southeast Pennsylvania Support Group led by Raman Patel, the Fairfield, CA Support Group led by Carol Flynn, the North Carolina Support Group led by Crystal Edmonds, and the Metro Detroit Support Group led by Jules Watkins.
Fall events included the Indy Hunt for a Cure for Dystonia which took place September 10th in Garfield Park, Indianapolis. The organizing committee included DMRF Support Leaders Sarah Ernstberger and Sunshine Fox.
Longtime DMRF supporter Linda Davis and Niel Marturiello organized the “Fight for a Cure—Dystonia Awareness” basket raffle to benefit DMRF on September 17th. Legislator Dominick Thorne presented Linda with a Certificate of Merit from Suffolk County Legislature for her dystonia awareness efforts. Dean Murray presented her with a Dystonia Awareness Proclamation on behalf of Senator Alexis Weik.
In honor of Tracey Deyoung, Better Halves and the Fat Bastards motorcycle group organized the 2nd Dystonia Warrior Ride and dystonia awareness after party to benefit DMRF on September 24th.
Closing out event season was the 3rd Virtual Dystonia Zoo Day on October 8th. The program was emceed by DMRF President Mark Rudolph and Executive Director Janet Hieshetter and included appearances by Lolly Lardpop performed by Leslie Carrara-Rudolph.
Dystonia Zoo Day team leader Paige Kaiser moderated a session with Toledo Zoo Day organizer Kristin Cinglie, zoo keepers Dana Leck and Patricia Schuelke from Toledo Zoo & Aquarium, and a white rhino named Aashish.
A yoga break and demonstration moderated by DMRF Support Leader Martha Murphy featured DMRF Medical & Scientific Advisory Council Member Jean-Francois Daneault, PhD and Aurora James-Palmer, DPT, PhD, RYT-200.
Emmy-winning musician and DMRF Awareness Ambassador Billy McLaughlin hosted a conversation with visual artist and DMRF Legacy Society Member Sheri Grube and Paralympic Champion Sydney Peterson.
DMRF Support Leader Brad Schmitt moderated a dystonia research Q&A with clinician-scientists Brian Berman, MD and Noreen Bukhari-Parlakturk, MD, PhD.
All team donations, for in-person and virtual Dystonia Zoo Days, up to $100,000 were matched by a generous anonymous donor.
Since the Dystonia Zoo Day program began in 2012, the events have cumulatively raised over $2.2 million in support of the DMRF mission to find a cure, not yet including this year’s match which continues to be calculated.
National Sponsors of the Dystonia Zoo Day program were Allergan, an AbbVie Company; Merz Therapeutics, and Ipsen Biopharmaceuticals.
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.
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