The DMRF organized a scientific workshop on the Mechanisms of Reduced Penetrance in Dystonia in Helsinki, Finland on June 19-21. Dystonia penetrance refers to the percentage of individuals with a specific genetic mutation who develop dystonia. The workshop was co-chaired by Christine Klein, MD from the University of Lübeck and Christopher Pearson, PhD from the […]
The Dystonia Medical Research Foundation has added a new brochure to our library of resources: Non-Motor Symptoms of Dystonia. Dystonia is a life-altering neurological disorder that affects the physical body, but the impact goes far deeper. The hallmark signs of dystonia are excessive, involuntary muscle contractions that cause abnormal postures and/or repetitive movements. Individuals diagnosed […]
In this issue: Meet two gold medalist Paralympians with dystonia Get to know the DMRF’s new Chief Science Officer Find out what fuels dystonia research Focus on: Early onset childhood dystonia Learn how advocates nurture dystonia awareness READ NOW
The Dystonia Medical Research Foundation (DMRF), a leading non-profit organization dedicated to funding research to find a cure for dystonia, is proud to announce its 2025 grant and fellowship recipients. This year, the DMRF awarded six grants and fellowships for basic and clinical dystonia research projects. These grants and fellowships will support scientists investigating the […]
The truncal dystonia (axial dystonia) brochure is the latest addition to the DMRF’s library of resources. Truncal dystonia impacts the muscles in the middle trunk of the body, including the chest, back, and abdominal muscles, and may be affected in both isolated (primary) and acquired (secondary) dystonia. The trunk is affected in generalized and can […]
DYT1 dystonia, also known as early-onset torsion dystonia, is a severe form of hereditary, generalized dystonia.
Tips for Managing Holiday Stress Living with dystonia is challenging year-round, but the holiday season can pile on additional stress that can affect your health and dampen the spirit of the season. DMRF spoke with Mary and Mark Letson of Melrose, Mass., to find out how they manage the holidays as a person with dystonia […]
It is not uncommon for some people with dystonia to also suffer with depression and/or anxiety. Knowing where to seek help can be overwhelming and sometimes a hindrance to getting help. To break down that barrier, DMRF spoke with Laurie Strawgate-Kanefsky, PhD to explain the various types of mental health providers and offer some critical […]
Maddie Paolero and Dee Linde share how their dogs, JJ and Murphy, bring independence and companionship to their lives. Learn if a service dog may be right for you and what it takes to find and care for one. At age 5, Maddie Paolero was diagnosed with early-onset generalized dystonia. “I started noticing when she […]
September is Dystonia Awareness Month. Join us for a conversation about cervical dystonia, its impact, diagnosis and management, and the importance of speaking with a healthcare provider if you are experiencing potential symptoms. Janet Hieshetter, Dystonia Medical Research Foundation’s Executive Director, is joined by Crystal Edmonds, who is diagnosed with cervical dystonia, and Dr. Diego […]
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