“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 is 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).

“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 myotonic dystrophy, the more other people can be helped.”

“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.

When Kevin and Loraine Dressler of Huntington Beach, Calif., entered their 60s a few years ago, they started looking at retirement communities. The couple was looking at places with lots of leisure activities and thought about buying a motor home and visiting U.S. national parks. But that's not what happened.

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.

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.

Mike Hamlin reflects on launching the MDF Support Group in Washington, DC.

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.

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.