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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.

“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 it [myotonic dystrophy], the more other people can be helped.” Have you thought about participating in DM research?

Read more about what Christina has to say. 

“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.” 

Susannah Savitsky, a 46-year-old Florida attorney, says being part of a DM study has "had a huge positive influence" on her life and provided her with an all-expenses-paid "little vacation" when she visits her study site in Maryland. Read Susannah's story here.

When Mary Childress was in her thirties, she’d wake up in the morning with her hand clutched in a very tight fist. “I’d have to use my other hand to pry my fingers open, and it was painful to do it,” she recalls 30 years later. “I never mentioned it to my doctor. I just thought it was just some kind of strange quirk I had.”

Steven and Hamsa Kiryakoza hope that research may ultimately lead to treatments that will help their son Steve, but until that happens, they are trying to give him as much of a normal childhood as possible.

In the decade since Karl Valek was diagnosed with DM1, his wife Carolyn has stepped in as his full-time medical case manager, even going so far as to earn a graduate certificate in patient advocacy.

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