Focus On: DYT1 Dystonia

DYT1 dystonia, also known as early-onset torsion dystonia, is a severe form of hereditary, generalized dystonia.

Tips for Managing Holiday Stress With Dystonia

Tips for Managing Holiday Stress Living with dystonia is challenging year-round, but the holiday season can pile on additional stress that can affect your health and dampen the spirit of the season. DMRF spoke with Mary and Mark Letson of Melrose, Mass., to find out how they manage the holidays as a person with dystonia […]

Jason Dunn Gets Street Named in His Honor

The city of Warren, Mich., has dedicated a street in honor of Jason Dunn who has been a tireless advocate for dystonia. He and his friend, Mike Delise, have raised more than $116,000 for dystonia research through their $5Cure4Dystonia fundraising campaign. Warren Mayor Jim Fouts unveiled the new street sign, Jason Dunn Way, during a […]

4th Virtual Dystonia Zoo Day Unites the Community

In June, 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 12 cities plus the 4th Virtual Dystonia Zoo Day which was livestreamed online on October 14 uniting the entire dystonia community across all 50 states. The DMRF is grateful to […]

Chicago Dystonia Zoo Day Recognizes Local Researcher

Chicago Dystonia Zoo Day was held at the Brookfield Zoo on Saturday, October 7. This family-friendly event was organized to promote awareness of dystonia, connect the dystonia community, and support the work of the DMRF. DMRF Board members Art Kessler and Treasurer John Downey presented the prestigious Changing Lives through Science award to Cynthia Comella, […]

Boston Dystonia Zoo Day Closes Out Awareness Month

Heartfelt gratitude goes out to all participants, volunteers, and generous sponsors of 2023 Boston Dystonia Zoo Day held on September 30, the final day of Dystonia Awareness Month. This year’s event, hosted by Paula Schneider, Vice President of Support for the Dystonia Medical Research Foundation and members of the Greater Boston Dystonia Support Group, including co-leaders […]

Dystonia Zoo Days Held in Ft. Wayne and Toledo

On September 23, Dystonia Zoo Day events were held in Toledo, OH, and Ft. Wayne, IN. Each event united the local dystonia community in support of the DMRF mission to find a dystonia cure. We congratulate host Community Leadership Council member Kristin Cinglie for her outstanding efforts in creating a successful event in Toledo that […]

Mental Health Care Provider Overview for Dystonia

Dystonia Mental Health

It is not uncommon for some people with dystonia to also suffer with depression and/or anxiety. Knowing where to seek help can be overwhelming and sometimes a hindrance to getting help. To break down that barrier, DMRF spoke with Laurie Strawgate-Kanefsky, PhD to explain the various types of mental health providers and offer some critical […]

2023 Angels Walk Update

Angels Walk

Due to the non-tropical coastal storm anticipated for this Saturday, September 23, 2023, with potentially high winds and heavy rain forecasted for our 1st Angels Dystonia walk New Jersey – we unfortunately, have decided to cancel the event. This event was scheduled as rain or shine, but not for a storm. At this time, our […]

Thank You Pittsburgh Zoo Day

Dystonia Zoo Day

We want to say a big thank you to everyone who joined us for Dystonia Zoo Day Pittsburgh. It was amazing to see the dystonia community come together for such an important cause. We are grateful for your support in helping to raise awareness and funds for dystonia research. Let’s keep working together to make […]

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