Myotonic Dystrophy: Family Stories

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. She was a compelling speaker, advocate, and fundraiser for the myotonic dystrophy cause, and was responsible for the participation of American family members at the International Myotonic Dystrophy Consortium in 2005 from which MDF evolved.

Renee Bux, now 17, was adopted at the age of three months. Her mother, Joy, recalls that, although they knew their baby had a slow start, “We had fallen in love with Renee, and knew immediately that she was part of our family."

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.

I am Kelly Bormann. I live in Overland Park, Kansas and am married to Steven Bormann. We have 3 beautiful children. Reed (4), Adalyn (2) and our little angel Anna who passed away when she was 6 weeks old. Anna is the reason for this 5K walk called Muscles for Myotonic.

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.

My name is Eric Wang, and it's an incredible honor for me to serve as an advocate for myotonic dystrophy, both as a researcher who studies myotonic dystrophy, and as a person who grew up seeing the effects of DM every day.

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.

When Ed Gunderson and his wife, Alice, first got Ed's diagnosis, they did not know anyone else living with the disorder. That would soon change.

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