Welcome to Summer and the Return of Dystonia Zoo Days!

Summertime is a time of community, support and awareness for those living with dystonia.

By Janet Hieshetter, Executive Director, Dystonia Medical Research Foundation

Memorial Day is traditionally the start of summer and summer is one of the most important and active times for DMRF members and supporters.

All too often people are hearing the word dystonia for the first time when they are diagnosed. The pain and the involuntary muscle contractions dystonia brings is life changing compounded by the lack of awareness that often results in isolation for those affected. Having a community who understand what dystonia is and how it changes lives can make all the difference in the world for those living with dystonia and their families.

For over 10 years, the DMRF been organizing and hosting Dystonia Zoo Days to bring the community together and to send the strong message that no one has to face dystonia alone. These family-focused events are being held in nine cities across the country this summer starting with New England on Saturday, June 14 at the Roger Williams Zoo in Providence, Rhode Island.

Our membership and their families have embraced these events and made them one of our most popular gatherings of the year. Not only are they able to enjoy a great day at the zoo, but they are also able to be with others who fully understand dystonia.

The added bonus is that these events create a wave of awareness and with everyone wearing the same Dystonia Zoo Day T-shirts enjoying the zoo that day. The shirts become an enduring awareness banner as people wear them throughout the year staring conversations with people at the grocery or hardware stores or while standing in line for ice cream. The awareness started at the zoo is just the beginning.

More than 10,000 have attended DMRF’s Dystonia Zoo Days since its inception; this is a testament to not just the popularity of these events but also the importance of being part of a community all coming together to support one another and increase awareness while raising funds for dystonia research.

These events empower those living with dystonia and their loved ones. Dystonia Zoo Days are opportunities to give and receive support. As Margaret Mead said, ‘Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.

They are more than just a day at the zoo, these events are gathering places for committed dystonia advocates. We invite you to join us. To find the Dystonia Zoo Day nearest you and come join our community and enjoy a day at the zoo. For a listing of all of the 2025 Dystonia Zoo Days click here.