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Team —
Board of Directors

Meet John Cooley

Board Member, Kansas City Regional Support Group

MDF Annual Conference

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John Cooley co-facilitates the Kansas City Regional Support Group with Patricia Gibson. An attorney and the Director of Strategic Sourcing at RSM US LLP, John started the Kansas City myotonic dystrophy support group in 2019. His connection to the DM community began after his younger son was diagnosed with DM1 in 2016. John and his family attended the next two MDF Conferences, which strengthened his commitment to learning about myotonic dystrophy and staying involved locally. Ever since, he has worked to support and advocate for families living with DM. In 2025, John deepened his involvement by joining the MDF Board of Directors.

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.