Shannon Lord was the founding chair of the MDF Board of Directors from 2006-2009. She was an Atlanta, Georgia, resident where she lived with her architect husband, Larry, and two adult sons, Hunter and Ashby. She had the adult-onset form of DM1, while her two sons had childhood-onset form.
An artist, writer, gardener and volunteer, she was also a myotonic dystrophy advocate for nearly ten years by raising $300,000 in research funding, speaking at International Myotonic Dystrophy Conferences, the NIH and other places. She convened the American family members who attended the International Myotonic Dystrophy Consortium (IDMC-5) in Quebec in 2005. Out of that meeting MDF evolved with Shannon as a founding member.
Shannon passed away in 2013 and her legacy continues on, stronger each day, until there are treatments and a cure for myotonic dystrophy.
