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Shannon Lord was the founding chairman of the MDF Board 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 mild form of DM1, and her two grown sons have childhood-onset. 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.
