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Team
— Board of Directors

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.

MDF Annual Conference

View past & upcoming conferences.

MDF’s Impact

View progress and annual reports.

Jeremy Kelly, OBE

Board Chair & Lifetime Trustee

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Martha Montag Brown

Vice-Chair

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David Herbert

Treasurer

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Haley Martinelli, Esq.

Secretary, DM2 Virtual Support Group, Affected Women’s Support Group

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Andy Berglund, Ph.D.

Scientific Advisory Committee Chair, Board Member

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Belen Esparis, M.D.

Board Member

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Charles Thornton, M.D.

Board Member

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David Berman, MBA

Board Member

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Elizabeth Florence, Esq.

Board Member

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John Cooley, Esq.

Board Member, Kansas City Regional Support Group

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John W. Day, MD, Ph.D.

Board Member

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Peter Desforges

Board Member

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Robert Campagna, M.D.

Board Member

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Thomas (Tom) McPeek

Board Member, DM2 Virtual Support Group

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Meet the rest of the team

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.

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.