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DM1 Stories
Each person living with DM1 has
a unique and powerful story to tell
We support all people, families and caregivers living with rare diseases, this Rare Disease Day and every day

Living with DM1 profoundly impacts every part of people’s lives, from work and socializing to family life. Community members have shared their moving perspectives with our team, including what it would mean to them to have a potentially transformative therapeutic for their disease.

Meet Sarah

Meet Sarah

Sarah shares the impact DM1 has on her and her family and why a potentially transformative therapy is urgently needed

BillyDean and Suzette photo

Meet BillyDean and Suzette

Through their resilience and Suzette’s incredible advocacy efforts for her son, BillyDean, they succeeded in getting a DM1 diagnosis and have been learning how to live and thrive ever since

Joachim Boekelmann photo

Meet Joachim and Tim

Joachim and Tim share their personal stories on living with DM1

Joachim Boekelmann photo

Meet Joachim

“I’m not alone in this:”
One person’s journey with DM1

Loraine Dressler photo

Meet Loraine

A courageous family battle and devotion in the face of generational adversity

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