We’ve refreshed our website! Take a look around, tell us what you think, or revisit the archived site.
Save the Date: Join us April 28 - May 2 for the 2027 MDF International Conference in Seattle, Washington!
Learn more
IMPORTANT: Find all anesthesia guides for individuals and their families and healthcare professionals
Anesthesia resources
Donate
Team
— 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.

Meet our Ambassadors

Sharing stories, driving change

Work with Ambassadors

View speaking requests and terms

Beth Feigenblatt

Florida Regional Support Group, Awareness Ambassador

Read bio

Cindy Hubert

Pacific Northwest Regional Support Group, Awareness Ambassador

Read bio

Julie LeBoeuf

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

Read bio

Juniper Riddle

Awareness Ambassador

Read bio

Laila Allen

Awareness Ambassador

Read bio

Liz Long

Awareness Ambassador

Read bio

Luke Desforges

JOA Warriors Support Group, Awareness Ambassador

Read bio

Mike Zemechman

Awareness Ambassador

Read bio

Nathaniel Uhl

Awareness Ambassador

Read bio

Samantha Welsh

Virginia Regional Support Group, Awareness Ambassador

Read bio

Shaun Moore

Affected Men’s Support Group, Awareness Ambassador

Read bio

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.
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.