It’s been an exciting year and very impactful year for myotonic dystrophy and MDF, and we’re exci
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.
Mollie McKool discovered that her family was affected by DM1 the way so many families do: when her daughter Kristen gave birth.
“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.
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, 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.
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.