The personal essay was written by Alex Wiggans, the grandson of Myotonic community members Dr. Glen Wiggans and Marlo Wiggans.
Myotonic Dystrophy: Family Stories
Even though Donna Boulmay spent a career as a nurse before retiring, she lived most of her adult life in the midst of a medical mystery that had shaped much of her family’s existence. That changed shortly after her grandson Jackson turned five years old.
Participation in research studies and clinical trials is critical to finding therapies for myotonic dystrophy. As part of the Every Body Counts! campaign, Myotonic will highlight DM community members who have proactively participated in research studies and clinical trials. Read about Zenica Sanford.
Mary Dowdle, a community member living in Virginia, says that participating in research has been a great way to feel like she's contributing to Care and a Cure for DM, and it's been interesting too!
Sarah and David Berman had never heard of myotonic dystrophy until their baby Zoé was born with the congenital-onset form of the disease, which is known as CDM.
Acclaimed musician Eric Hutchinson is using his new album to support Care and a Cure. Read his inspiring family story.
“Our friends had no knowledge of the disease,” says Lee Baker, “nor had my family. They had no idea what I was talking about.”
Joachim Boekelmann is an attorney for a global insurance company, the husband of artist Mic Boekelmann, and the father of two adolescents. He also happens to be affected by type 1 myotonic dystrophy (DM1).
“I’m a teacher. Every day, even if I’ve had a hard day, I know why I’m on this earth. I know my purpose here is to educate people... The more we can learn about myotonic dystrophy, the more other people can be helped.”
“You’re doing something positive in a negative situation, taking action against the disease. They don’t have answers yet, but these studies are working toward answers.