DMRF Events Unite Community Virtually & In-Person

In August, DMRF launched a series of dystonia awareness and community-building events, including the signature Dystonia Zoo Days. Dystonia Zoo Days were held in-person in eight cities plus the 3rd Virtual Dystonia Zoo Day  which was livestreamed online. Volunteers hosted additional local meetings and events in the summer and fall. DMRF support groups across the […]

Dystonia Zoo Days Close Out Awareness Month

The DMRF’s final three in-person Dystonia Zoo Days closed out Dystonia Awareness Month in cities across the country: Cleveland, Los Angeles, and St. Paul/Twin Cities. The Flanagan Family, who created the original Dystonia Zoo Day, hosted the 9th Cleveland Dystonia Zoo Day on September 25th. Many thanks to event organizers DMRF Community Leadership Council Member Karen […]

H.Res. 1413 Recognizes Dystonia Awareness Month

Dystonia Advocacy Day on Capitol Hill

As a testament to the tireless work of the dystonia community’s legislative advocates, H.Res.1413 – “Expressing support for designation of September 2022 as ‘National Dystonia Awareness Month’ and raising awareness and understanding of the disorder of dystonia” was entered into the Congressional Record on September 30th. The resolution to recognize Dystonia Awareness Month was championed […]

Dystonia Zoo Days Draw Crowds in Boston and Pittsburgh

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 […]

Pamela Sloate Bronx Dystonia Zoo Day Reunites Community & Supports Research

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 […]

Volunteers with Laryngeal Dystonia Needed

A stylized blue transparent X-ray illustration of an adult human from the chest up, against a black background. The skeleton and organs are visible. The voice box located in the throat is illuminated in pink.

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 […]

Living with Cervical Dystonia

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 […]

In Memoriam: Blair Ford, MD

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 […]

DMRF Formalizes Commitment to Mental Health

At a Glance: Untreated mental health disorders reduce quality of life for individuals with dystonia. The Covid-19 pandemic has taken a global toll on peoples’ mental health. DMRF created a Mental Health Programming Committee to formalize efforts to address mental health needs. The hallmark symptoms of dystonia are involuntary movements and postures, but this only […]

September is Dystonia Awareness Month

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 […]