Mark Rudolph serves as president of the Dystonia Medical Research Foundation (DMRF), a patient advocacy group that supports individuals and families affected by dystonia. The dystonias are a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his journey to rare disease advocacy, impactful work by the DMRF, and collaboration with the Dystonia Coalition (DC).
The Dystonia Coalition is an international network of researchers and patient advocacy groups working to advance the pace of research in the dystonias, find better treatments, and ultimately a cure. Here, program manager Gamze Kilic Berkmen, PhD, and principal investigator Hyder Jinnah, MD, PhD, share the history of the consortium, current research, and future plans.
H. A. Jinnah, MD, PhD, principal investigator of the Dystonia Coalition, reports here on a recent paper published in Neurology that examines the relationship between tremors and dystonia.
For the first time, researchers have comprehensively defined the demographic and clinical characteristics of upper limb dystonia, a rare disorder that affects muscles in the arms, forearms, and hands. Powered by the Dystonia Coalition database, the Movement Disorders publication is the largest study of limb dystonia to date.