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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

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.

MDF Support Groups

A safe place to connect and share.

One-on-One Support

Questions, guidance, and resources.

Haley Martinelli, Esq.

Secretary, DM2 Virtual Support Group, Affected Women’s Support Group

Alexandra LeBoeuf

Canadian Support Group

Anke Klein

International German Speakers Support Group

Ann Woodbury

JOA Caregivers Support Group

Annette Rjnak

Caregivers Support Group

Araceli Mera

Grupo de Soporte Virtual en Español de MDF

Bernhard Rogg

International German Speakers Support Group

Beth Feigenblatt

Florida Regional Support Group, Awareness Ambassador

Bill Nuttall

Adult Facebook Chat, DM1 Facebook Group Moderator, & New England Regional Support Group

Caroline Easterling

Maryland Regional Support Group

Carolyn Valek

Ohio/Michigan Regional Support Group & Juvenile-onset Adult (JOA) Warriors Support Group

Chuck Hunt

South East Regional Support Group

Cindy Hubert

Pacific Northwest Regional Support Group, Awareness Ambassador

David Kugler

Grupo de Soporte Virtual en Español de MDF

Emily Jones

Finger Lakes and Upstate New York Regional Support Group

Erin Beucler

DM 1 Facebook Group Moderator

Guillermo Zubillaga

NYC/NJ Regional Support Group

Hank McPeek

Service Dog to Tom McPeek

Jeannine DeSoi

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

Jim Dolan

Affected Men’s Support Group

Jodie Howell, LPN, CCRP

Virginia Regional Support Group

John Cooley, Esq.

Board Member, Kansas City Regional Support Group

Julie LeBoeuf

Canadian Support Group, International French Speakers Support Group, Awareness Ambassador

Kathie Thorsland

Mountain West Regional Support Group

Kathy Coletta

NYC/NJ Regional Support Group

Kelsey Freedman

DM2 Facebook Group Moderator

Kim McPeek

DM2 Caregivers Support Group

Kim Reynolds

DM2 Facebook Group Moderator

Kristen McClintock

Florida Regional Support Group & DM Virtual Happy Hour

Kyle Dunson

JOA Caregivers Support Group

Lois Schenk

Finger Lakes and Upstate New York Regional Support Group

Luke Desforges

JOA Warriors Support Group, Awareness Ambassador

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.

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.