DMRF Canada’s Support Advisory Group (SAG) was formed to provide enhancements to the support group structure and advise staff on support programs and strategies to address unmet needs of the community. These members bring not only their individual perspectives but also those of their respective groups – across different regions, age, gender and the challenges posed by their types of dystonia.
- Robin Krantz, Greater Vancouver, BC
Receiving a cranial dystonia diagnosis (also known as Meige syndrome) in 2003, Robin knows all too well what the unique challenges a dystonia diagnosis can bring. Co-leading her Group from 2015-2023, Robin is an excellent leader as she carefully considers the needs of the community to ensure those with dystonia are living their best lives possible with the diagnosis.
- Joanne Alford, North Edmonton, AB
Since her diagnosis, Joanne has been involved in dystonia support. She has been the leader of her group for more than two decades. Her objectives have been to build the network of persons affected by dystonia and those who treat it, so as to visibly enrich and enlarge the knowledge of dystonia through awareness, education, advocacy, and research; thereby, improving the well being of persons living with dystonia.
- Jennifer Lovell, Winnipeg, MB
Like many others with dystonia, Jennifer spent years undiagnosed and looking for answers. She spent 35 years searching and was relieved when she learned that she had dystonia. With her personal experience and having worked
at the Faculty of Medicine at the University of Manitoba, Jennifer strives to build connections with the medical community and provide the support needed for affected individuals and families.
- Casey Kidson-Reid, Kingston ON
Casey first got involved with DMRF Canada as an Ambassador and launched her campaign; Dyfying Dystonia. Since that time, Casey joined the DMRF Canada Board of Directors in 2020 and has taken on several responsibilities that advance DMRF Canada’s mission, including supporting others with dystonia. Casey facilitates the DMRF Kingston Support Group, has developed exercise videos, and was featured in our Dystonia Awareness video.
- Yann Rondeau, Montreal, QC
Yann co-founded ‘Twisted Talk’; a support group for anglophone people in 2018. Yann was diagnosed with dystonia in
October 2017, a few months after experiencing symptoms. At that time no one was able to confirm what his condition was, and this experience inspired Yann to help others in a similar position. Yann understands the physical and emotional challenges that come with a dystonia diagnosis and understands how powerful connecting with others and building community can be.
- Jason Young, Cape Breton, NS
Jason’s journey with dystonia began when he was 25. Eventually he received a diagnosis of Paroxysmal Non- Kinesiogenic Dyskinesia (PNKD), though his dystonia has evolved over the years. After many late-night visits to the ER and challenges with medical professionals who were not familiar with dystonia, Jason is passionate about raising awareness for the condition as an advocate and Support Group Leader.