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Meet the team

Finding a treatment or cure for myotonic dystrophy can't happen without uniquely qualified individuals who are dedicated to the cause. The exceptional people we call on each day are what keep us moving forward towards treatments.

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A team united for the DM community

Behind every MDF program, resource, and milestone is a team of people deeply committed to making a difference. Our staff, board members, scientific advisors, and volunteers bring expertise, compassion, and personal dedication to the work. Many have direct connections to DM, while others have devoted their careers to supporting rare disease communities. Collectively, they drive MDF’s mission forward with heart and purpose.

Our group of dedicated people

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.
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.

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.