New PMDC support group fosters community and research collaboration

By Dan Carrigan

Patients grappling with dystonia, a neurological disorder characterized by involuntary muscle contractions, have begun gathering at the Short Pump Pavilion’s 2nd-floor conference room as part of an enriching support group. Hosted by the Parkinson’s and Movement Disorders Center (PMDC), the new support group welcomes members of the community grappling with various forms of idiopathic dystonia.

Led by Caileigh Dintino, clinical research coordinator with the PMDC, the sessions
aim to provide a platform for sharing insights, discussing new research topics, and fostering connections among attendees. Dintino emphasized the importance of community building and collaborative brainstorming to shape the support group into a valuable resource for those affected.

“The goal is to bring people together to learn about dystonia and learn from one another
to navigate the challenges that dystonia can create in day-to-day life,” says Dintino. “We also understand the impact of community and encourage the development of lasting friendships and camaraderie. It’s that heightened empathy and understanding of what each individual is going through that will continue to make these sessions special.”

Registered with the Dystonia Medical Research Foundation, the support group sessions offer
a blend of informative discussions and open conversations, allowing participants to learn from expert guest speakers and connect with peers facing similar challenges. The group’s agenda includes 25 to 30 minutes dedicated to information or research topic discussions 
followed by 45 to 60 minutes of interactive dialogue and connection-building activities.

The first meeting was held in late May and drew 12 attendees who have a wide variety of dystonia subtypes.

Recognized as a rare disorder, dystonia can lead to feelings of social stigmatization and a loss of independence. The support group sessions seek to address these challenges by offering a platform for education, mutual support and friendship.

Moving forward, the group plans to continue meeting on the last Thursday of every other month. There’s a virtual option to accommodate those who live far away or who are too impaired to join in person. As the support group grows, Dintino hopes to incorporate additional events and activities to further enhance the sense of community and support among participants.