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.
An active MDF advocate, fundraiser and community member, Teresa Schmertman shares her approach to life and living with DM. "It's about a passion for the cure," she says, "second only to my passion for my family."
Mike and Dean Sage, two brothers who are both living with DM, lean on each other and their family for support. They approach life differently than most people their age: although they are optimistic about their future, they now focus on living in the moment.
Alain Geille, one of the organizers of IDMC-10, brings a real understanding of DM to both IDMC and the Association Française Contre les Myopathies, as both his son and wife are living with DM1.