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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 Emily Romney, MPA

Senior Manager of Community Education

MDF Annual Conference

View past & upcoming conferences

Emily Romney joined MDF in June 2023 as our Special Projects Manager and became our Community Education Manager in 2024, and our Senior Manager of Community Education in 2025. After completing her undergraduate degree in Public Health, she recently earned her Master of Public Administration degree with emphases in nonprofit management and social impact. While working in the nonprofit health sector as a program coordinator, she deepened her passion for strengthening communities through empowerment and advocacy. Emily interned with MDF in the summer of 2022, where she worked on gathering community feedback for the evolution of MDF’s Toolkit. She was also fortunate enough to attend MDF’s annual conference in San Diego, CA. Impressed by MDF’s commitment to ensuring the DM community remains at the core of each of the organization’s decisions, she was thrilled to join the MDF team again!

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.