The 1st Boston Dystonia Zoo Day took place on Saturday, September 17th, followed by the 7th Pittsburgh Dystonia Zoo Day on Sunday, September 18th. Each event united the local dystonia community in support of the DMRF mission to find a dystonia cure. In Boston, DMRF past President Art Kessler presented Dr. Xandra Breakefield of Massachusetts […]
The Pamela Sloate Bronx Dystonia Zoo Day to benefit the DMRF took place Saturday, September 10th. This is the sixth year of the event, and the first since it was renamed to honor DMRF Board Member Pamela Sloate who died from cancer in April. Pamela previously served as Chair of the planning committee, a role […]
Boston University Stepp Lab researches various voice and sensorimotor disorders. They hope to help guide new and existing forms of therapy. They are creating more objective measures to diagnose and assess the severity of adductor spasmodic dysphonia/laryngeal dystonia. They want to better understand the nature of SD/LD and how treatments impact symptoms. Currently, they have […]
September is Dystonia Awareness Month. Join us for a conversation about cervical dystonia, its impact, diagnosis and management, and the importance of speaking with a healthcare provider if you are experiencing potential symptoms. Janet Hieshetter, Dystonia Medical Research Foundation’s Executive Director, is joined by Crystal Edmonds, who is diagnosed with cervical dystonia, and Dr. Diego […]
DMRF leadership is deeply saddened to report the death of movement disorder specialist Blair Ford, MD, Medical Director for the Center for Neuromodulation and Movement Disorder Surgery at Columbia University Medical Center. Steven Frucht, MD, Co-Founder of the Leon Fleisher Foundation for Musicians with Dystonia, authored the fitting tribute below. “It is with great sadness […]
An estimated 250,000 people in the United States have dystonia, a chronic movement disorder affecting the brain and nervous system. It is the third most common movement disorder after essential tremor and Parkinson disease. Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates […]
On Saturday, August 27, the 2nd Toledo Dystonia Zoo Day returned after a two year hiatus due to the Covid-19 pandemic. The event was organized by DMRF supporter Kristin Cinglie. “It was an amazing day of raising awareness, connecting with old and new friends and growing our local dystonia support community!” she said. “I am […]
On Thursday, August 18, DMRF officially launched a series of Dystonia Zoo Day events with a Virtual Kick-Off Celebration. DMRF President Mark Rudolph and Executive Director Janet Hieshetter provided a preview of in-person and virtual Dystonia Zoo Day events scheduled for August through October and introduced viewers to in-person Dystonia Zoo Day hosts and DMRF […]
Allergan, an AbbVie Company is continuing their long-standing support of the dystonia community by returning as a National Sponsor of the Dystonia Medical Research Foundation’s (DMRF) Dystonia Zoo Days in 2022. The purpose of these events is to bring together individuals and families affected by dystonia and raise funds in support of the DMRF mission. […]
The DMRF is proud to partially support two Dystonia Coalition Pilot Project Awards. The goal of the Pilot Projects Program is to foster the most promising clinical and translational studies on dystonia. Moodscreen for Cervical Dystonia: A Diagnostic Accuracy Study of Depression and Anxiety Davide Martino, MD, PhD, University of Calgary Depression and anxiety frequently […]
The 9th Annual “Rockin’ for a Cure” organized by Robin and Marc Miller of New York on July 14 raised $147,000 for urgently-needed dystonia research. The event supported the Cure Dystonia Now Fund of the Dystonia Medical Research Foundation (DMRF). Sponsors included Allergan, an AbbVie Company; Reliance First Capital; and Command Direct. Over the past […]
The DMRF is pleased to return to in-person events in select cities to re-unite the dystonia community, promote awareness, and support the mission to find a cure. We’re especially excited to announce this year’s Dystonia Zoo Day season, with both in-person events and virtual opportunities to participate. A Virtual Kick-Off Celebration on August 18, 2022 will mark […]
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