We’ve refreshed our website! Take a look around, tell us what you think, or revisit the archived site.
IMPORTANT: Find all anesthesia guides for individuals and their families and healthcare professionals
Anesthesia resources
Join us at the 2026 MDF regional conference - Happening in a city near you!
Event details
Donate
Team —
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.