It is with great sadness and heavy hearts that the MDF mourns the passing of our founding chairma
Stories
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, 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.
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.
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.
Crawfish Boil...in Southern California? You better believe it! Each year, the Jensen family hosts the event in their backyard near San Diego, California. The 2013 Crawfish Boil occurs Saturday, May 18th and promises to be the most successful fundraiser and crawfish party yet!
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.
