Event Details
We are pleased to bring back Virtual YOU Day—a thoughtfully designed experience focused on you! This year's program features expert-led educational sessions, conversations about the importance of a support system, and the opportunity to connect with others who understand the dystonia journey. Together, we'll learn, share, and strengthen the connections that remind us no one has to face dystonia alone.
Virtual YOU Day is a true community effort, and your voice helps amplify its impact. The more people who join us, the stronger our community becomes. Invite your friends and family, host a watch party, and most importantly, share the event link far and wide. Every new connection helps build a larger, more informed, and more supportive dystonia community.
How It Works
Join DMRF supporters from across the country for an evening of learning, connection, and inspiration. Together, we'll raise awareness of dystonia, strengthen our community, and support the DMRF's mission to advance research, education, advocacy, and support.
As a member of the dystonia community, you help create change every day by sharing your story, encouraging others, and helping people feel seen and understood. The progress we've made over the past 50 years has been possible because people like you have come together to support one another and raise their voices for a common cause.
Whether you're living with dystonia, caring for someone who is, or supporting the community in another way, Virtual YOU Day is a reminder that you're part of something bigger. Together, we can continue building a future where every person affected by dystonia has access to knowledge, hope, and a community that stands beside them.
The cost to register for this event is free. Registration is required so the link can be sent to you to access the event.
There's more! The DMRF is pleased to offer “Movers & Shakers” t-shirts to honor all in our community who are making things happen and working to improve the lives of those affected by dystonia. If you would like to purchase an exclusive t-shirt ($25 each), please visit our store here!
Date & Time
The event will take place right here on this website on September 30, 2025 at 7:00 PM ET. After registering, you will be emailed a link to join. The program will run approximately 90 minutes.
Program
Join us for these informative discussions designed to help you and your personal support system navigate life with dystonia:
• The “Community Session” is led by support group leaders Martha Murphy and Kathy Ray, and DMRF member Jim Sebesta. This panel will discuss the importance of support and social connections and the different ways they meet with their support systems.
• The “Ask the Experts” panel features two members of the Advisory Council for Mental Health (ACMH), an initiative established by the DMRF to prioritize the non-motor and mental health aspects of living with a movement disorder. DMRF Chief Science Officer Jonathan Mink, MD, PhD and Davide Martino, MD, PhD, will examine the science behind support. Daria Dragicevic, PhD, a former DMRF grants intern, moderates this session.
• Lauren Jackon and Naomi Taggart, leaders of the Rochester, NY support group, introduce DMRF support groups, highlighting what happens during meetings and the lasting benefits of connecting with others in the dystonia community, including fostering connection, providing practical resources, and helping individuals and families navigate life with dystonia.
• Friends of the DMRF Leslie Carrara-Rudolph and Lolly Lardpop will make a special appearance during Virtual YOU Day as well!
Follow DMRF communications for more details on the full program as we get closer to the event.
About the DMRF
The DMRF is the oldest, most established dystonia patient organization in the world and is an internationally recognized leader in dystonia providing services to individuals and families impacted by all forms of dystonia.
Contact the DMRF
Dystonia Medical Research Foundation / One East Wacker Drive, Suite 1730, Chicago, Illinois 60601-1980 Phone: 312-755-0198 / Toll Free: 800-377-DYST (3978) / Fax: 312-803-0138
dystonia@dystonia-foundation.org / www.dystonia-foundation.org / EIN#95-3378526