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?
“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.
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.
MDF Board Member David Herbert is using his background in business development and new ventures to help forge critical new partnerships for MDF. Understanding the economic and social impacts of DM is crucial to getting business working toward a cure.
A decade after their son Jack's DM diagnosis, Kristen Vassallo and John Fitzpatrick are active in efforts to educate others about the disease, and the message they preach from their experience is one of hope.
From coping to community engagement, the Korsgaard family has found strength in the MDF community and approaches life with love and enthusiasm.
Belen Esparis uses her medical expertise to help her daughter Emily navigate life with DM. "I just want her to keep trying," she says. The Esparis-Kugler family has raised more than $35,000 for MDF and DM research since they learned about the disease.