As we recognize 50 years of DMRF Canada, we're reflecting on the people who have made this milestone possible. We simply wouldn't be here without the dedication of our members and volunteers. One of those remarkable individuals is Brenda Currey, President of the Edmonton Dystonia Support Group and peer support contact for those living with dystonia and generalized dystonia specifically, who has spent nearly 40 years volunteering with DMRF Canada and has become a familiar and inspiring presence in our community.
Brenda has been living with generalized dystonia for most of her life. Her symptoms began in early childhood and affect most parts of her body. As a result, she has used a wheelchair for many years.
Seeking connection with others who understood their family’s experience, Brenda’s mother, Sheron contacted DMRF Canada when it was first founded. Brenda had been diagnosed the year before at age 7. They were looking for a community where they could share stories, exchange practical advice, and build relationships with people living with dystonia.
It didn't take long for Brenda to become a leader. Edmonton founded their local support group in 1990 and a few years later when they were looking for a new president, Brenda stepped in to the role. She got to work organizing meetings and producing newsletters to raise awareness and keep members informed.
Brenda also recognized the importance of fundraising. Although she says she wasn't sure where to begin, she was always willing to say "yes" when help was needed. In 1999, DMRF Canada board member Connie Zalmanowitz, whose son has dystonia, approached Brenda with the idea of organizing an Edmonton Run, Walk and Wheel fundraiser in support of dystonia research. Brenda was quick to ask, "How can I help?"
That willingness to help has never faded. Over the years, Brenda has dedicated countless volunteer hours to the Edmonton Dystonia Support Group. Those early Run, Walk and Wheel events paved the way for other initiatives, including Edmonton's casino fundraisers and the group's annual letter-writing campaign.
For many years, Edmonton had two collaborative dystonia groups. One focused on peer support and awareness, while Brenda and Connie concentrated much of their energy on fundraising. "Research is important," Brenda says. "There could be a breakthrough, and the only way we can get one is if we keep raising money." She also points out that there are more researchers interested in studying dystonia than there is funding available. "If they're interested, the money should be there," she emphasizes.
More recently, Edmonton's two groups merged once again, with Brenda stepping into the role of President. She hopes to continue growing the group's membership and create more opportunities for people to connect in person. Just as she once sought out a community of people who understood her journey, she wants to ensure that same support is available to others. "I would love to hear what people want," she says.
Beyond her volunteer work with DMRF Canada, Brenda leads an active and engaged life. "I'm quite independent," she says. "People would probably be surprised at the things I can do." She does her own grocery shopping, cares for her loyal dog, Cooper, and regularly visits her mother, who continues to be one of her greatest supporters after volunteering alongside Brenda in the dystonia community for many years.
Exercise is also an important part of how Brenda manages her dystonia. She has attended programs at the Steadward Centre twice a week for nearly 40 years, focusing on maintaining flexibility while enjoying the friendships she's built there. "I've made a lot of friends there," she says. At the same time, she's learned the importance of listening to her body and allowing herself time to rest and recover when needed.
In 2013, Brenda shared her story in her memoir, A Twisted Fate: My Life with Dystonia. She wrote the book to raise awareness and to help others navigate their own journeys with dystonia. More than a decade later, it continues to reach readers around the world. Brenda still receives messages from people who say her story has helped them better understand dystonia and life with a disability. As one reviewer wrote, the book "inspires you to live your life to the fullest,” a sentiment that perfectly captures Brenda's enduring optimism, resilience, and commitment to helping others.
As DMRF Canada marks its 50th year, we're proud to recognize volunteers like Brenda Currey, whose generosity, leadership, and unwavering belief in the power of community continue to strengthen our organization and inspire people living with dystonia across Canada.
More about Brenda and her ongoing efforts to raise awareness can be found on her book website: www.atwistedfate.ca
Originally published in the Fall/Winter 2026 edition of the Dystonia Canada Report.