This article was published in the Dystonia Dialogue. “We’re experts in the diagnosis, pathophysiology, and management of any disabling condition,” explained John McGuire, MD, a physical medicine and rehabilitation (PM&R) specialist and Director of Stroke Rehabilitation & Spasticity Management at Froedtert Medical College of Wisconsin. PM&R physicians evaluate and treat patients with physical and cognitive […]
The Dystonia Medical Research Foundation (DMRF) has partnered with Frontiers to launch Dystonia, a Gold Open Access journal. The journal will bring visibility to the growing dystonia field and highlight advancements in science and clinical practice. “The field is ready for a journal focused solely on dystonia,” said Co-Editor-in-Chief Aasef Shaikh, MD, PhD, Penni and […]
This article was published in the Dystonia Dialogue. Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. People who live with dystonia may also experience a range of non-motor symptoms that dramatically impact […]
This article was published in the Dystonia Dialogue. The path to becoming a parent for individuals in the dystonia community is as varied as society at large. There are more options than ever for having children: biologically, via reproductive medicine, fostering, and adoption. Parents with dystonia may encounter challenges that parents without health issues might […]
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 […]
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