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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

Staff & Interns

Meet Lucie Shiffman

Senior Manager of Community Engagement

MDF Annual Conference

View past & upcoming conferences

Lucie joined MDF in March 2024 as our Senior Manager of Community Engagement. Coming from years working in community organizing and program management, she is excited to join a team with such a focus on building community and care programming and initiatives. While working in the non-profit sector as a program manager, Lucie found her passion in supporting volunteers showing up for their communities. Centering the lived experience of volunteers and the communities they serve allows Lucie to build and strengthen relationships that lead to effective and long-lasting community support. She earned her Bachelor of Science in Psychology from Allegheny College, and spends her free time reading, walking, and volunteering in her hometown of Cleveland, Ohio.

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.

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.