Linda Marshall has written a moving overview of her struggles to find a diagnosis for the problems her children faced, and the particular impact of brain-related symptoms on her family.
Marsha Dugan likes to describe herself as simply a stay-at-home mom, and avoids talking about her MBA and experience in international business, finance and marketing. Marsha, 60, who stepped back from the business world to raise her two sons, joined the board of the Myotonic Dystrophy Foundation in January 2017.
Learn about the Laue family and their connection to myotonic dystrophy.
The personal essay was written by Alex Wiggans, the grandson of MDF community members Dr. Glen Wiggans and Marlo Wiggans.
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, MDF 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.
“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, 48, lives in Princeton, N.J., where he’s 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), which he and his sister inherited from their father. Read more about how Joachim found community and support and learned the power of connection.