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Team
— Former Board Members

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.

Our History

Explore our history and milestones.

MDF’s Impact

View progress and annual reports.

Alice Gunderson

Former Board Member

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Barry Wald

Former Vice-Chairman

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Don Mackenzie

Former Board Member

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Dr. Mel Kohn, M.D., M.P.H.

Former Board Member

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Dr. Woodie Kessel, M.D., M.P.H.

Former Chairman

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Joel Revill

Former Board Member

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John Fitzpatrick

Former Board Member

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Lisa Harvey-Duren

National Advocacy Committee, Founding Executive Director

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Marsha Dugan

Former Board Member

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Ona McConnell

Former Board Member

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Richard Weston

Former Board Member

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Shannon Lord

Founding Chair

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The Honorable Tim Kaine

Former Board Member

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Todd Stone

Former Board Member

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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.
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.

Join us in making a difference

Advocate

Help drive policy change and accelerate progress for people living with DM.

Fundraise

Rally your community to support vital resources and life-changing research.

Volunteer

Join our team of volunteers who bring connection, and support to the community.