Elizabeth Florence lives in Dallas, Texas with her husband, Kirk and two sons, Will and Sam. Sam was born January 20, 2002, and has congenital myotonic dystrophy. Upon Sam’s first birthday, Elizabeth stopped practicing law to devote her full attention to care for her family, the special needs of Sam and to raise awareness of myotonic dystrophy. In 2011 and again in 2013, she organized Sam’s Squad, a group of 300 supporters who ran in or volunteered at a water station during the Dallas Marathon. In its first year alone, Sam’s Squad raised more than $100,000 and funded an MDF research fellow at Baylor College of Medicine in Houston, Texas.Learn more about the Florence Family's story.

Martha Montag Brown joined the MDF Board in June 2017. Martha’s family received a diagnosis of myotonic dystrophy type 1 in early 2017, which led her to reorganize her commitments and interests to focus on accelerating therapy development and improving the quality of life of families currently affected. Martha is the founder of Martha Montag Brown & Associates, LLC, a retained executive search practice with a focus on philanthropy and corporate responsibility. For nearly 25 years, Martha has advised some of the country’s most recognized corporate and private philanthropic organizations and placed key transformational leaders. Prior to starting her executive search practice, Martha was executive director of the Levi Strauss Foundation and director of Global Community Affairs.

Martha and her husband, Michael, live in La Canada, CA, and she is the proud mother of two sons, a daughter and daughter-in-law. Martha received her undergraduate degree from Georgetown University, where she currently serves as an active Emeritus member of its Board of Regents. She has served on, and chaired, a number of non-profit boards, including most recently the Board of Trustees of Flintridge Preparatory School.Read more about Martha, her family, and how they got involved with the foundation

Jeremy Kelly, Chairman, came to the states from England for college and now lives in Mill Valley, California with his American wife, Erica, and two young sons, Jack and Ben, both of whom have childhood-onset myotonic dystrophy. Like many individuals, Erica – with the mild form - might never have known she has this disorder had her children not been more affected than she. After an 18 year career at JPMorgan, Jeremy recently joined the management team of Provident Funding. As of May 2007, he started a one-man fundraising effort by seeking pledges for his daily bike commute - 32 miles round trip – with the goal of reaching 5,000 miles in one year. His idea has proven successful with over $150,000 raised! He's also spearheaded securing $450,000 to create a solid financial foundation for MDF for the next three years. In attendance at IDMC-5 in Quebec, he is also a founding member and served as the Treasurer from 2006 to 2009. Learn more about the Kelly Family and their Diagnostic Odyssey.