If you live in MT, IL, VT, CA, WA, RI, HI, NH, AL, KY, ME, AK, SC, MO, KS, ND, or AR we need your help ASAP. We are asking you to reach out to your Senator, because they serve on the Senate Defense Appropriations Subcommittee (the list is below), to ask them to continue […]
2021 marks 45 years since the Dystonia Medical Research Foundation (DMRF) was founded. Since 1976, we have worked tirelessly, every day, on behalf of every affected individual and family. And we won’t stop until there is a cure. Whether you are new to DMRF or have been a member for decades, thank you. Over and […]
You can educate Members of Congress about dystonia and how it changes lives. Join us to support the Dystonia Advocacy Network’s virtual advocacy agenda, launching March 3, 2021. Register today. Join dedicated volunteers from across the country to advocate for the dystonia community on important issues like funding for research, creating research funding opportunities through […]
This article was originally published in the Dystonia Dialogue. What is dystonia? Dystonia is a brain disorder resulting in involuntary, abnormal postures or movements of the body due to excessive muscle contractions. Dystonia may be the only neurological disorder a person has, or the dystonia may be part of a medical condition or disease with […]
This article was originally published in the Dystonia Dialogue. The DMRF was only a few years old in the late 1970s when Susan Aguilera’s seven-year-old daughter Emma was diagnosed with dystonia by a special panel of neurologists in San Diego. Finally there was an explanation for why her little girl had lost the ability to […]
This article was originally published in the Dystonia Dialogue. The Dystonia Coalition is a global research network funded by the National Institutes of Health that has engaged investigators and patients on an unprecedented scale to improve dystonia treatment. Since 2010, the Dystonia Coalition has included a Natural History of Isolated Dystonia study aimed at better […]
Researchers at Massachusetts Eye and Ear in Boston led by Kristina Simonyan, MD, PhD, Dr med have developed a unique diagnostic tool that detects dystonia from MRI scans, the first technology of its kind to provide an objective diagnosis of the disorder. Dr. Simonyan is a former member of the DMRF Medical & Scientific Advisory […]
There are many types of dystonia, often presenting with very distinct symptoms. There is also a great deal of overlap in the physical manifestation of symptoms across the different types. Non-motor symptoms are common, including psychiatric disorders such as depression and anxiety. There have been numerous genes identified to cause dystonia, and it is not […]
The Musicians With Dystonia program of the DMRF has been renamed The Leon Fleisher Foundation for Musicians with Dystonia, in memory of the influential and beloved pianist and prominent public champion for dystonia. Mr. Fleisher sadly passed away earlier this year. The Leon Fleisher Foundation for Musicians with Dystonia was created in 2000 by French […]
Botulinum neurotoxin (BNT) injections are a common treatment for dystonia. This therapy is used to treat dystonia symptoms in a specific group of muscles, for example, the neck, face, or a limb. Despite the popularity of this treatment for dystonia, certain important aspects of the therapy may come as a surprise to new patients. BNT […]
This article was originally published in the Dystonia Dialogue. The Covid-19 outbreak has had a disproportionate impact on individuals with disabilities and chronic medical conditions, including those with dystonia. There has been widespread disruption of local public services, delays in treatment appointments, and changes to everyday routines. The DMRF checked in with several members of […]
The Myoclonus-Dystonia Research Program is a partnership between the DMRF and the Brown Family Foundation focused on advancing knowledge of this inherited movement disorder. Myoclonus-dystonia (M-D) is a movement disorder characterized by a combination of rapid, brief muscle contractions (myoclonus) and/or sustained twisting and repetitive movements that result in abnormal postures (dystonia). Non-movement features may […]
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