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Team —
Former Board Members

Meet Don Mackenzie

Former Board Member

MDF Annual Conference

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Don MacKenzie grew up in a large family in western Canada. He received formal training in engineering at the Colorado School of Mines in Golden, Colorado. Over time his interests have grown from oil and gas into other industries. At present he is involved with a small private Canadian foundation in the orphan disease and medical research field. Don and his wife Karen enjoy living in Calgary, Alberta, Canada with their four teenage children.

Meet the rest of the team

Board of Directors
Comprised of leaders in science, finance, fundraising, advocacy and non-profit leadership. Their expertise helps our work, assess our impact, and guide our pursuit of patient-relevant outcomes.
Medical & Scientific Advisory Committee
A group of leading myotonic dystrophy specialists and researchers from around the globe. Our advisors provide guidance, grant peer reviews, and speak at our annual conference.
Staff & Interns
Our staff and interns oversee the Foundation’s daily operations and work closely with the Board to guide and implement our strategic priorities.
Support Group Facilitators
Our support group facilitators are volunteers who give their time and energy to guide discussions, share resources, and foster meaningful support for individuals and families living with DM.
Former Board Members
Past leaders who have helped shape the organization’s direction and impact. Their experience and dedication continue to inform our work and strengthen our commitment to the community.
Awareness Ambassadors

Trained volunteers who share personal experiences to raise awareness and help researchers, clinicians, industry partners, and other audiences better understand what it means to live with DM.
National Advocacy Committee (NAC)
First launched in 2022, the MDF National Advocacy Committee (NAC) is a group of extraordinary community volunteers dedicated to working at the federal level in the US to increase myotonic dystrophy (DM) awareness, grow DM research funding, and advance policies to accelerate the approval of drugs to treat and eventually cure DM.