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Team
— Staff & Interns

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.

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Tanya Stevenson, EdD, MPH

Chief Executive Officer

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Andy Rohrwasser, PhD, MBA

Chief Scientific Officer

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Emily Romney, MPA

Senior Manager of Community Education

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Genevieve Wiegleb

Communications Associate

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Kleed Cumming

Director of Communications & Technology

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Lucie Shiffman

Senior Manager of Community Engagement

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Mindy Buchanan

Director of Programs

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Nadine Skinner, PhD, MPA

Director of Evaluation & Research Programs

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Scarlett Chidgey

Director of Development

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Sofia Olmos, PhD

Myotonic Dystrophy Family Registry Coordinator

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Danny Kuei

Myotonic Dystrophy Family Registry Data Intern

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Kevin Brennan

Advocacy Consultant

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Malia Weatherspoon

Communications Intern

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Mindy Kim

Registry Outreach Specialist, South East Regional Support Group, DM Virtual Happy Hour, & Adult Facebook Chat

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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.
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.

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.