For children with dystonia, symptoms such as involuntary movements, muscle contractions, abnormal postures, fatigue, pain, or difficulties with writing, walking, or speaking can create barriers at school. Two tools that may help are 504 Plans and Individualized Education Programs (IEPs). A 504 Plan, provided under Section 504 of the Rehabilitation Act, helps ensure that a…
Get ready for the upcoming Dystonia Zoo Days and visit the event websites to learn more about T-shirt deadlines and sponsorship opportunities. You won’t want to miss this family-friendly event to promote dystonia awareness if it is coming to a city near you! If you attended a Dystonia Zoo Day earlier this year, select photos…
Traveling by airplane during the busy summer travel season means more crowds and possible delays for everyone, and a trip to the airport can present some unique challenges to individuals with dystonia. Pre-planning is critical. Individuals with mobility issues might need to request a wheelchair at least 48 hours in advance of their flight. People…
How many of these Dystonia Dialogue covers do you remember? The history of this publication goes back nearly as far as the DMRF. Recognizing 50 years of making a difference, a 16” x 20” poster version of this Dystonia Dialogue cover artwork can be ordered through the DMRF website store. It’s suitable for framing and…
We are deeply saddened to announce the death of Frances Belzberg, co-founder of the Dystonia Medical Research Foundation (DMRF). Fran and her husband, Sam, established the DMRF in 1976 after their daughter, Cheri, was diagnosed with dystonia. They immediately recognized the importance of engaging dystonia experts to join with the DMRF to work on developing…
Social interaction is important for individuals with chronic health conditions like dystonia, which can be very isolating. Summertime is an opportunity for increased social connection in many ways. Communities across the country plan outdoor activities such as local festivals, art fairs, sporting events, and free concerts. Informal gatherings of friends and relatives, whether it involves…
What is the Dystonia Coalition, and how is it helping drive progress in dystonia research? Research collaboration is critical to advancing treatments and improving lives. Learn about ongoing efforts to better understand dystonia through research and patient advocacy group collaboration by watching a recording of the recent DMRF webinar exploring the work of the Dystonia…
The Dystonia Medical Research Foundation is welcoming the following new members to the Medical and Scientific Advisory Council (MSAC) this year. We look forward to working with them and having them as part of the DMRF. Amy Bastian, PhD, PT (Kennedy Krieger/Johns Hopkins) Baltimore, MD, USA Davide Martino, MD, PhD University of Calgary Calgary, Alberta,…
Summer months bring higher temperatures, and the need for greater awareness about the potential effects of heat on your health. According to the National Weather Service, people with chronic medical conditions, those who take certain medications, live alone or have limited mobility can experience adverse effects during extreme heat events. “Any stress tends to exacerbate…
FINAL DAYS: Two years after first experiencing symptoms and six months after being diagnosed with task-specific dystonia, professional dart player Jules van Dongen is turning passion into purpose. This spring, Jules will cycle across the U.S. — a powerful solo ride with a big mission. The journey — called Pedals & Points 2026 — blends…
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