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Jessica Flynn, 26, grew up with a mother and twin sisters who all live with myotonic dystrophy; her mother has adult onset DM, and her sisters have congenital DM. Although Jessica hasn’t experienced any symptoms, she’s in the process of getting tested to determine if she’s a carrier. Jessica often hears the comment, “It must have been so hard growing up with family members affected by DM,” but she didn’t see it as a burden or a problem, it was just her normal life.

Diane Bade’s three children — Scott, Nicholas, and Christine -- have myotonic dystrophy, as did her husband, Chris Bade, who passed away in 2005. Though not affected herself, Diane, like many parents and spouses, works tirelessly to educate herself, her family and her community.

Sisters Mary Dowdle (37) and Caroline Easterling (39)  live in neighboring states: Maryland and Virginia, respectively. Both women live with myotonic dystrophy type 1, as did their father, grandfather and great grandfather.

When Marty Benner’s granddaughter, Sophia, was born in November 2006, the doctors and nurses immediately knew something wasn’t right. She was put on life support while they monitored and tested her, yet more than a month later, they still couldn’t figure out what was wrong.

“Our family’s story begins when my undiagnosed daughter, Danielle, almost died giving birth and one of her twins had an initial APGAR score of zero.

Saurabh Rai, a San Francisco-based research analyst, has always been active and physically fit. So when he began experiencing mild myotonia several years ago, he didn’t take it too seriously. By 2009, the myotonia had gotten worse, despite the fact that he was exercising a lot.

Shannon Lord, MDF's founding chairman, passed away on June 4, 2013. Shannon had a mild form of DM1 and her two grown sons have childhood-onset DM.

Renee Bux

Renee Bux, now 17, was adopted at the age of three months.  She had been hospitalized right after birth and diagnosed with “failure to thrive,” but then began making steady progress.

Todd & Nicholas Stone

Nicholas Stone loves playing basketball and is a valuable member of the team at Deep Run High School in Virginia. Although Nicholas has DM, his diagnosis doesn’t prevent him from participating.

Liz Florence lives in Dallas, Texas, with her husband, and two sons, Sam, 10, and Will, 13. Sam was born with Congenital Myotonic Dystrophy. Will is unaffected by Myotonic Dystrophy (DM). "lt's very difficult to be a mother to a child who is different.


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