On Thursday, August 18, DMRF officially launched a series of Dystonia Zoo Day events with a Virtual Kick-Off Celebration. DMRF President Mark Rudolph and Executive Director Janet Hieshetter provided a preview of in-person and virtual Dystonia Zoo Day events scheduled for August through October and introduced viewers to in-person Dystonia Zoo Day hosts and DMRF supporters.
“For anyone who is new to this,” explained Mark, “The Dystonia Zoo Day program is a national movement to raise awareness of dystonia and to unite individuals with dystonia and their families. So many people feel isolated because of dystonia, and we want to show that help and support are available.”
The program included a visit with zookeepers at the Toledo Zoo to learn about the tamandua, from the anteater family. Fan favorite Lolly Lardpop, performed by Leslie Carrara-Rudolph, also made appearances in advance of participating in the upcoming 3rd Virtual Dystonia Zoo Day.
Then, on Saturday, August 20, the 5th Portland Dystonia Zoo Day marked the first in-person event of the Dystonia Zoo Day season. Event organizer and member of the DMRF Community Leadership Council Dee Linde was presented with an award commemorating the event’s fifth year.
Dee founded and leads the Portland, OR & Southwestern WA Dystonia Support Group as well as a private Facebook group named Dystonia & Deep Brain Stimulation. She stated, “It was great seeing so many live, familiar faces again after over two years of virtual meetings. People said they had a fun time and their smiles were proof!” The last in-person Portland Dystonia Zoo Day took place in 2019, before in-person DMRF events were suspended due to the Covid-19 pandemic.
Special guests in Portland included neurosurgeon Seth Oliveria, MD, and movement disorder specialist Joanna O’Leary, MD, from Providence Brain & Spine Institute.
Eight cities will host an in-person Dystonia Zoo Day: Portland (8/20), Toledo (8/27), NYC/Bronx (9/10), Boston (9/17), Pittsburgh (9/18), Cleveland (9/25), Los Angeles (10/1), and Twin Cities (10/2).
The event series will end with the 3rd Virtual Dystonia Zoo Day & Closing Ceremony (10/8).
All team donations, for in-person and virtual Dystonia Zoo Days, will be matched up to $100,000 by a generous anonymous donor.
National Sponsors of the Dystonia Zoo Day program are 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.