The theme for the 2026 National Family Caregivers Month is “Care Connects Us.” The Caregiver Action Network defines a caregiver as “anyone who helps another person manage their health, daily needs, or overall well-being—often without pay.” This may include: In addition to caregiver resources that are available on the Caregiver Action Network website, the DMRF…
Join the DMRF and the National Institute of Neurological Disorders and Stroke (NINDS) for the virtual 2026 NINDS Dystonia Workshop: Reassessing the Landscape, on Thursday, Nov. 19, from 9 a.m. to 5 p.m. EST. This virtual workshop bringing researchers, clinicians, and the dystonia community together to take stock of the field and chart its future….
The 7th Samuel Belzberg International Dystonia Symposium will be held April 7-9, 2027, in Seville, Spain. Co-chaired by Buz Jinnah, MD, PhD, and Antonio Pisani, MD, PhD, the Symposium will be designed to provide a comprehensive overview of important scientific advances in the field and stimulate discussion within and across disciplines. Registration prices increase after…
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…
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…
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…
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