Five adults and two children, one in a stroller, posing for a photo. A young brunette woman in the front row is sitting in a wheelchair. All are wearing matching Dystonia Zoo Day t-shirts.

Upcoming Dystonia Events – Join Us!

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. […]

Amanda Sleeper and friend 2022

Nashua Dystance4Dystonia 5K Returns

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 […]

medical professional with young female patient

Tips on Finding a Doctor

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 […]

Dystonia Advocacy Day on Capitol Hill

Take Action to Educate Elected Officials about Dystonia

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 […]

LILLEHAMMER, NORWAY - JANUARY 18: Sydney Peterson of USA wins bronze in the Women's 15km Standing Cross Country race during the World Para Snow Sports Championships at Birkebeineren Ski Stadium on January 18, 2022 in Lillehammer, Norway. (Photo by Alex Livesey/Getty Images)

Sydney Peterson Competes in Beijing Paralympic Winter Games

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. […]

Dystonia man in wheelchair

Family Healing in Living with Dystonia

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, […]

Close up of a senior woman having a doctors appointment.

Not Born Yesterday: Dystonia & Aging

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 […]

5 dollar cure black

$5Cure4Dystonia Raises $100K+ for Medical Research

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 […]