The MDF Board of Directors is comprised of volunteer leaders from the public and private sectors, many of whom are either living with myotonic dystrophy or have loved ones with the disorder. Their families represent many manifestations and varying degrees of severity of the disorder, including both DM1 (congenital, childhood-onset and adult-onset) and DM2. The Board works closely with the MDF staff and Scientific Advisory Committee to offer insight into the subtleties of the disease.
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 of DM—might never have known she has this disorder had her children not been more affected than she. After an 18-year career at JP Morgan, Jeremy joined the management team of Provident Funding, where he serves as Chief Financial Officer. In 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 proved to be very successful, with more than $150,000 raised. In attendance at IDMC-5 in Quebec, he is also a founding member and served as MDF Treasurer from 2006 to 2009.
Dr. Woodie Kessel, M.D., M.P.H.
Woodie Kessel, BSEE, M.D., M.P.H., FAAP, Vice-Chairman, is a community pediatrician and child advocate with experience in bioengineering, medicine, public health, community-based programming, and public policy. His areas of scholarship include the well-being of children of military families; improving birth outcomes; prevention of childhood obesity; social determinants of child health; access to quality health care; child health care reform; local/global community-based partnerships; health equity; health diplomacy, global health, and child health policy.
Prior to his current appointment as C. Everett Koop Fellow in Residence at the C. Everett Koop Institute at Dartmouth College and Medical School, and Professor of Practice at the University of Maryland, Dr. Kessel served in the U.S. Public Health Service as an Assistant Surgeon General and senior advisor on child and family health matters to the White House, Cabinet Secretaries, Surgeons General, and Health and Human Services officials spanning eight administrations. Dr. Kessel serves on several boards including the Myotonic Dystrophy Foundation; National Healthy Mothers, Healthy Babies Coalition Board; PBS KIDS Health Council; Healthy Children, Healthy Futures Organization; the Fischell Bioengineering Advisory Committee, UMD; and others. Dr. Kessel studied electrical engineering at Drexel University; medicine at the Albert Einstein College of Medicine; and, public health at the Johns Hopkins University. He completed his pediatric residency and primary care fellowship at Boston City Hospital. He was a RWJF Clinical Scholar and an ambulatory pediatrics fellow at the George Washington University’s Children’s Hospital National Medical Center.
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.
With more than 20 years of leadership roles supporting Mayo Clinic global outreach and growth initiatives, David Herbert has broad expertise in domestic and international business ventures and partnerships, new product and service launches, diagnostic testing services, intellectual property management, and health and wellness digital markets. David is currently President and CEO of 46 North, LLC, a Rochester, Minnesota-based company supporting the launch and execution of high-growth health care, diagnostics, and health and wellness initiatives. David served as Chair of Mayo Clinic Global Business Solutions (GBS) from 2011-2014, and managed business units providing Mayo Clinic knowledge-based products and services to companies and consumers around the world. David is a competitive cyclist and cross-country skier. He holds an emeritus position at Mayo Clinic and is looking forward to helping lead the implementation of MDF 3.0, in addition to pursuing opportunities in new and emerging health technologies. David has asymptomatic DM1 and his two daughters are living with the adult-onset version of the disease.
John Brekka, another founding member who attended IDMC-5, lives in Coral Springs, Florida with his wife, Flo. He is the managing partner of the law firm Quintairos, Prieto, Wood and Boyer in Fort Lauderdale. As an individual living with myotonic dystrophy type 2 (DM2), he has been active on the DM2 Yahoo Board organized for those living with this form of myotonic dystrophy. He was also instrumental in starting a support group with the Muscular Dystrophy Association in South Florida in 2006. John served as Secretary from 2006 to 2009, and as Vice-Chairman from 2009 to 2015.
Marsha Dugan is a former businessperson who is now active in civic affairs and caring for her family. Her professional background includes 12 years in the oil and gas exploration industry, 18 months service with the MBA Enterprise Corps in the Czech Republic and Slovakia, two years with Bank of America in the mid-market credit group and 18 months in financial market research with Prophet Consulting. Marsha’s board commitments have included service as a board member and board chair at Leadership Public Schools and board membership at Marin Horizon School. Marsha is also active on committees with her local Episcopal church. An Oklahoma native, Marsha has lived in the San Francisco Bay Area since 1994. She earned a B.A. from Randolph Macon Woman’s College in Lynchburg, Virginia (now Randolph College) and an M.B.A. from University of North Carolina-Chapel Hill.
John Fitzpatrick, a former school board member, chamber of commerce executive, middle school teacher and coach, serves as the executive director of the Texas High School Project (THSP). A unique public-private initiative, THSP is dedicated to all Texas students graduating high school college ready, career ready and life ready. John brings a wealth of non-profit board service experience to MDF and is pleased to be a part of our exciting future. He has long been involved in the educational and political arenas, including a four-year stint on Capitol Hill where he worked on education and workforce development policies for the U.S. House of Representatives and U.S. Senate. John previously served as Treasurer of the Board of Directors. He lives in Austin, Texas with his family.
The Honorable Tim Kaine
Senator Tim Kaine currently represents the commonwealth of Virginia in the United States Senate. He is the former Governor and Lieutenant Governor of Virginia, Mayor of Richmond, Virginia, and Chairman of the Democratic National Committee. As governor, Sen. Kaine was a member of the National Governors Association, the Southern Governors' Association, and the Democratic Governors Association. Before entering into Virginia politics, Kaine was a lawyer in Richmond, Virginia, and worked with the Society of Jesus (the Jesuits) as a Catholic missionary in Honduras. Sen. Kaine endorsed the Democratic nominee, now President Barack Obama in the 2008 presidential election and was considered a possible choice to be Former President Barack Obama's running mate. While governor of Virginia, Sen. Kaine became familiar with myotonic dystrophy through his relationship with fellow MDF Board Member Todd Stone, whose sons are affected by the disease. Because of this relationship and because of his understanding of the challenges of the disease, Sen. Kaine decided to use his experience with health care reform legislation along with his substantial work in fundraising to help MDF raise awareness and funds to find a cure.
Dr. Mel Kohn, M.D., M.P.H.
Mel Kohn, M.D., M.P.H. is the medical director for Adult Vaccines at Merck Pharmaceuticals. Previously he served as director for the State Public Health Division and State Health Officer at the Oregon Health Authority. He has worked in the public health sector since 1993, including two years as an Epidemic Intelligence Service Officer for the Centers for Disease Control and Prevention. Previously, Dr. Kohn was Medical Director for a Section of the Louisiana Office of Public Health in New Orleans, where he was also an assistant professor of Pediatrics at Tulane University School of Medicine. Dr. Kohn received a B.A. in Russian and East European Studies from Yale (1981), took pre-med courses at Columbia University, received his M.D. from Harvard (1990), and received his Masters in Public Health (M.P.H) from Tulane School of Public Health and Tropical Medicine (1997). He completed his internship and residency in pediatrics at the Children's Hospital in Boston, completed a preventive medicine residency at Oregon Health and Sciences University, and is board-certified in pediatrics and preventive medicine.
Todd Stone is a defense attorney with Stone and Cardwell in Richmond, Virginia. His two young sons, Elliott and Nicholas, were diagnosed with childhood-onset myotonic dystrophy; only after their diagnosis was their asymptomatic mother, Edibell, diagnosed. Very shortly after their diagnosis, the family met Dr. Mani Mahadevan, a pathologist and myotonic dystrophy researcher at the University of Virginia. After meeting with him, they immediately began organizing social fundraising events among friends in order to raise money to support Dr. Mahadevan’s research; they have asked close friends to do likewise with their friends. Their efforts are proving to be quite successful.