By the time Tim Haylon launched a Facebook fundraising campaign for his birthday in 2018, there was already a long-established Haylon family tradition of financially supporting myotonic dystrophy research.
Chuck Hunt’s daughter Carly was an accomplished equestrian ranked 18th in the nation, but her struggles in school were growing. The problems were serious enough that Chuck decided to homeschool his daughter, starting in the seventh grade. Much later, Carly suffered hand cramps that led to a myotonic dystrophy diagnosis at age 18.
Ask Israel Dubin about himself, and he’ll tell you he’s a Jewish, 65-year-old retired judge, father of three wonderful adult children, and husband to a great wife. What he’s likely not to mention is that he has myotonic dystrophy type 2 (DM2).
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.
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.”