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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

Support Group Facilitators

Meet Jeannine DeSoi

New England Regional Support Group, Affected Women's Support Group

MDF Annual Conference

View past & upcoming conferences

Jeannine DeSoi is a Co-Support Group Facilitator of the Massachusetts MDF support group. Jeannine lives just outside of Boston, MA. She was diagnosed with DM1 at 27 years old, less than 6 months before her wedding. Jeannine works full time as a Registered Nurse at a major hospital in Boston, which includes working three 12-hour shifts a week! She has a two-and-a-half-year-old unaffected son who is the sunshine of her life. After the retirement of the incredible Tim Haylon, Jeannine volunteered to lead the group and is proud to share their membership now spans Massachusetts, Maine, New Hampshire, and Connecticut.

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.