The Dystonia Medical Research Foundation (DMRF) is pleased to begin returning to in-person events in select cities to re-unite the dystonia community, promote awareness, and support the mission to find a cure. We’re especially excited to announce this year’s Dystonia Zoo Day season, with both in-person events and virtual opportunities to participate regardless of geography. […]
The Nashua Dystance4Dystonia 5K Walk/Run organized by Amanda Lockhead took place Sunday, May 15, 2022 to raise dystonia awareness and funds for urgently-needed research toward a cure. More than 100 people attended to share their support, after the event had been paused in recent years due to the pandemic. Donations continue to be calculated, but […]
This article was published in the Dystonia Dialogue. One of the most common inquiries the DMRF receives is from people seeking help locating a doctor who is qualified to diagnose and treat dystonia. They may have received a tentative diagnosis from a general neurologist and need a movement disorder specialist to confirm or rule out […]
This article was published in the Dystonia Dialogue. Botulinum neurotoxin (BNT) therapy is one of the most common treatments to reduce dystonia symptoms. BNT therapy involves injecting appropriate doses of BNT into the appropriate selection of muscles. Both the muscles to be treated and the specific doses determine the dosing regimen for an individual patient. […]
The Dystonia Advocacy Network (DAN) needs your help to raise awareness of dystonia with US elected officials and support the need for more dystonia research. Please consider becoming a dystonia advocate and joining with others across the country in making a difference. Sign up with DAN here. Being a dystonia advocate is easy, empowering, and […]
The Dystonia Medical Research Foundation (DMRF) announced at their annual meeting a new President of the Board of Directors and two new Directors as a result of joining with the non-profit organization Cure Dystonia Now. Each of these new appointments will enhance the DMRF’s work in service to the dystonia community. Mark Rudolph was appointed […]
Nineteen-year-old St. Lawrence University student Sydney Peterson of Lake Elmo, Minnesota is one of 15 Nordic athletes representing Team USA at the Winter Paralympics in Beijing (March 4-13, 2022). Sydney is competing in three standing cross country skiing races: the 15Km Classic, the 10Km Skate, and the Skate sprint. This is her first Paralympic Games. […]
By Karen K. Ross, PhD, DMRF Vice President of Support This article was published in the Dystonia Dialogue. Our family felt like the rug was pulled out from under us when my son was first diagnosed with dystonia. Each family member was affected in profound ways, and we experienced the entire range of emotions. Shock, […]
This article was published in the Dystonia Dialogue. Whether someone has lived with dystonia for months or decades, the disorder often requires adjustments across many areas of daily life. The advantages of experience and aging can help ease certain aspects of the dystonia journey, while evolving realities may create new challenges. Being aware of the […]
Mike Delise and Jason Dunn are on a mission to find a cure for dystonia $5 at a time. They are also educating the world about this under-recognized brain disorder that affects more people than ALS, muscular dystrophy, and cystic fibrosis combined. Mike became passionate about increasing dystonia awareness after meeting Jason, a childhood friend […]
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