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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.

I'm Erica Kelly and I live in Mill Valley, California. I'm married to Jeremy, and we have two boys, Jack and Ben, who are 12 and 14.

Eric Wang

Speech transcript, 2011 MDF Annual Conference

Three cheers for MDF board-member Ona McConnell and her Yale Women’s Field Hockey teammates Maddy Sharp and Jessie Accurso for their awesome performance in the Tough Mudder Challenge.

So, I’m Josh Crowder.  I’m 21-years-old.  I live in West Jordan Utah.  I have myotonic muscular dystrophy Type 2 and I’ve had it since birth, which a lot of people find unbelievable. 

The myotonic dystrophy community has lost a dear friend and champion in the fight to cure myotonic dystrophy. Edward Julius Gunderson died on December 11, 2009, after a long and courageous struggle with this disorder. Ed was truly a man with a vision.

“Live One Day at a Time, Laugh Often and Love Generously”


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