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Save the Date: Join us April 28 - May 2 for the 2027 MDF International Conference in Seattle, Washington!

IMPORTANT: Find all anesthesia guides for individuals and their families and healthcare professionals

— Awareness Ambassadors

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.

MDF Annual Conference

View past & upcoming conferences

Juniper Riddle

Awareness Ambassador

Mike Zemechman

Awareness Ambassador

Laila Allen

Awareness Ambassador

Nathaniel Uhl

Awareness Ambassador

Beth Feigenblatt

Florida Regional Support Group, Awareness Ambassador

Cindy Hubert

Mountain West Regional Support Group, Awareness Ambassador

Julie LeBoeuf

Canadian Support Group, International French Speakers Support Group, Awareness Ambassador

Luke Desforges

JOA Warriors Support Group, Awareness Ambassador

Samantha Welsh

Virginia Regional Support Group, Awareness Ambassador

Shaun Moore

Affected Men’s Support Group, Awareness Ambassador

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.

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.