The 1st Boston Dystonia Zoo Day took place on Saturday, September 17th, followed by the 7th Pittsburgh Dystonia Zoo Day on Sunday, September 18th. Each event united the local dystonia community in support of the DMRF mission to find a dystonia cure.
In Boston, DMRF past President Art Kessler presented Dr. Xandra Breakefield of Massachusetts General Hospital and Dr. Laurie Ozelius of Mass General Research Institute with Changing Lives through Science Awards for their contributions to the discovery of the DYT1/TOR1A dystonia-causing gene 25 years ago. This gene discovery contributed to the successful application of deep brain stimulation to treat dystonia and reproductive medicine to prevent parents from passing the DYT1/TOR1A gene onto their children, effectively ending a legacy of dystonia in some families. The gene discovery also ignited an explosion of new research into the origins and underlying neurobiology of dystonia.
“This discovery not only represented years of collaborative efforts by researchers, but also the collaboration of patients and scientists,” said Art in his remarks. “Members of the Board of the DMRF at the time, like my parents–all of who were and are personally affected by dystonia–made the visionary decision to invest in genetic research and believed this work would be successful.”
The DMRF is grateful to event organizers Paula Schneider, who serves as DMRF’s Vice President of Support, and Linda Cline and Mary Letson who lead the Greater Boston Dystonia Support Group.
In Pittsburgh, Dystonia Zoo Day was organized by Ed Cwalinski, MaryRae Nee, and Tara Sorley and Chris Mack. Ed and Mary Rae lead the Western Pennsylvania Support Group. Chris Mack, Co-Host of The Fan Morning Show on 93.7 The Fan, led a brief program that featured remarks from Dr. Taylor Abel from UPMC Children’s Hospital of Pittsburgh and DMRF Executive Director Janet Hieshetter.
The Pittsburgh Dystonia Zoo Day is in its seventh year, and attracted the largest crowd among all 2022 events so far–nearly 500 attendees and supporters.
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.