Histoires de familles

Juniper Riddle, diagnostiquée avec une DM2, a transformé les défis en créativité — en adaptant la vie à la ferme, en adoptant le jardinage hydroponique et en défendant l’accessibilité tout en restant connectée à sa communauté.

Mindy Kim, long active in the DM community since her 2010 diagnosis, brings her passion for connection and outreach to a new role with MDF. She will help families stay engaged and update the Myotonic Dystrophy Family Registry.

Alex and Julie LeBoeuf share their powerful journey with DM1 and now lead a Canadian support group, using their compassion and advocacy to support and uplift others in the myotonic dystrophy community.

Araceli Mera and David Kugler, longtime DM community advocates, have launched a new virtual Spanish-language support group to expand access, reduce barriers, and connect Spanish-speaking families affected by myotonic dystrophy.

Glenda Winson, Guillermo Zubillaga, and Jan Jaffe lead MDF’s New York City support group, creating connection and community for people living with myotonic dystrophy. Their shared experiences, compassion, and leadership help ensur...

With a fifteen-minute egg timer ticking, Ruth Sheldon listens as Jodie Howell and Samantha Welsh share why they give their time to the myotonic dystrophy community, blending science, faith, cats, snow, and grace into spaces of con...

Eric Wang reflects on the life and legacy of his father, Reynold Wang, who lived for decades with myotonic dystrophy. His father’s journey shaped Eric’s life, inspiring a career in DM research and a lasting commitment to helping f...

Diagnosed with DM1 at 30, guitarist and engineer Peter Ingraham kept moving through hockey, marriage, adoption, and decades with braces. Now using a scooter, he advocates fiercely for the DM community, finding strength in music, b...

A warm phone call cut through winter noise as Sarah Berman shared curiosity, empathy, and hard-earned wisdom. From caring for her daughter Zoe to guiding others, Sarah shows how advocacy, grace, and giving back can change lives.

Here we are with our very first story! I hope you all enjoy reading about our new Washington State’s co-facilitator Cindy Hubert. Let her journey in story begin.

Once an avid dog trainer and hunter, Tom McPeek rebuilt his life after DM2. Through acceptance, advocacy, and optimism, he transformed loss into purpose, supporting others while urging the community to stay positive and keep movin...

After myotonic dystrophy changed Bud Ingraham’s path, he and his wife Bethany found freedom on the open road. Through RV travel, love, and resilience, they turned loss and limits into unforgettable adventures and lasting memories.