Welcome to the Dystonia Support Group of Greater Washington DC

We are here to help individuals with dystonia and their care givers with...

Educational Outreach Programs

  • Conducts Support Group Meetings with guest speakers discussing topics of interest to dystonia affected individuals.
  • Produces newsletters featuring events, speakers’ presentations and advances in research.
  • Maintains a website to keep members informed.
  • Assists with symposiums.
  • Participates in health expos.
  • Compiles lists of practitioners familiar with the treatment of dystonia.
Legislative and Policy Advocacy
  • Participates in the Dystonia Advocacy Network (DAN) which brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community.
  • Organizes fund raising events in order to support DMRF sponsored research and support group activities.

And Most Importantly…

We Provide Someone to  Listen and  Be There for You!

For more information about our group, please call  our group's Coordinator, Sally Presti, at 301-627-1657 

What is Dystonia?

Dystonia is a movement disorder.

Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor.  

There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people are affected in the United States and Canada alone. Dystonia causes varying degrees of disability and pain, from mild to severe. There is not yet a cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

 Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person's life span.