Resources for Support Group Leaders

As part of DMRF Canada's support initiatives, we want to ensure you have all the resources you need to effectively lead and manage your group.

Please find below further information and resources to help you succeed. If you ever have an idea or something else that we can provide, please don't hesitate to reach out. Email Jamie at Remember we are always here if you need us.


Support Advisory Group Committee

In 2022, DMRF Canada formed the Support Advisory Group (SAG) Committee to provide guidance on enhancements to DMRF Canada Support Group structure and includes members of the community with lived experience with dystonia.

As a DMRF Canada Support Leader, if you have any questions/are in need of guidance regarding your group, please do not hesitate to reach out to one of the SAG members for their expertise.

SAG Contact Information: 

Robin Krantz- Greater Vancouver, BC rokrantz@hotmail.com778-549-8776. Advisor for overall support group management (10 years), patient queries, and managing members with disruptive or difficult behaviours.

Joanne Alford- North Edmonton, AB; 587 456 8462. Advisor for overall support group management (20 years) and patient queries. 

Jennifer Lovell- Winnipeg, MB manitobadystonia@gmail.comAdvisor for liaising with clinics and managing members with disruptive or difficult behaviours.

Casey Kidson – Kingston, ON dyfyingdystonia@gmail.comAdvisor for personal campaigns and awareness. 

Yann Rondeau – Montreal, QC; (438) 837-9904. Advisor for bilingual support. 

Jason Young – Cape Breton Island, NS; 902-539-9040. Advisor for advocacy and awareness. 

Please see the handout from SAG member, Robin Krantz, for tips on how to recruit and maintain engagement with volunteers.

Assisting Members in Crisis - Support Leader Webinar

Last update: May 2024