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.

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

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.

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.Read more about the Herbert Family and family planning with DM.

Dr. Berglund is the Director of the RNA Institute and an Empire Professor of Innovation in the Biological Sciences at the University at Albany. He received his BA in Biochemistry from the University of Colorado and his PhD in Biochemistry from Brandeis. He has studied the structure and function of RNA and the mechanisms of splicing throughout his career. He began studying myotonic dystrophy in 2002 when his first undergraduate student at the University of Oregon introduced him to the disease and the impact to his family. His group solved the first atomic resolution structure of the CUG repeats that cause myotonic dystrophy and they have many publications on the mechanisms of splicing in the context of myotonic dystrophy. In 2015, Dr. Berglund was one of the first DM Grant Recipients for his project, “Inhibiting transcription of CUG/CCUG expanded repeats with small molecules”. The Berglund lab has identified several classes of small molecules that rescue the molecular disruptions caused by myotonic dystrophy. The lab is working to understand the mechanisms through which these small molecules function and develop these molecules for future clinical trials for individuals with DM. For more information on Dr. Berglund, click here to visit his lab website.

Dr. Esparis is an Assistant Professor of Clinical Sleep Medicine at the University of Pennsylvania, Perelman School of Medicine. In 2012, shortly after her daughter's diagnosis, Dr. Esparis attended her first Annual MDF Conference in San Francisco. Since that meeting, Dr. Esparis and her husband David relationship with MDF has only deepened. Aside from volunteering her time to create a Spanish translation for the MDF Toolkit, Dr. Esparis has spoken at multiple MDF Annual Conferences and continues to organize fundraisers to support research focused on treatments and a cure for DM. Dr. Esparis served on the MDF 2021 Strategic Planning Steering Committee and currently serves on MDF’s National Advocacy Committee. Dr. Esparis was elected to the Board in March of 2022. Learn more about the Esparis-Kugler Family.

Dr. Thornton is Professor of Neurology at the University of Rochester. He, along with Dr. Moxley, is a Co-Director of the MDA clinic at URMC. He received his BA and medical degree from the University of Iowa. His internship in Internal Medicine was carried out in the UCLA/SFV Program. He finished his residency in Neurology in 1985 at Oregon Health Sciences University and a fellowship in Neuromuscular Disease at Strong Memorial Hospital in Rochester in Experimental Therapeutics. He has received a number of grants for DM research and has published numerous results in professional journals. He is now beginning to focus on the treatment phase of research for myotonic dystrophy. For further information on Dr. Thornton, visit the URMC website.

Dr. Thornton is Professor of Neurology at the University of Rochester. He, along with Dr. Moxley, is a Co-Director of the MDA clinic at URMC. He received his BA and medical degree from the University of Iowa. His internship in Internal Medicine was carried out in the UCLA/SFV Program. He finished his residency in Neurology in 1985 at Oregon Health Sciences University and a fellowship in Neuromuscular Disease at Strong Memorial Hospital in Rochester in Experimental Therapeutics. He has received a number of grants for DM research and has published numerous results in professional journals. He is now beginning to focus on the treatment phase of research for myotonic dystrophy. For further information on Dr. Thornton, visit the URMC website.

David Berman lives in Piedmont, California with his wife Sarah and daughter Zoé. Zoé was born in 2007 with congenital DM1, and Sarah has the adult-onset form of the disease. David has been working in the biopharmaceutical industry for nearly two decades. He has worked at various companies in the San Francisco Bay Area and New York, focusing on business development. Prior to that, he spent several years trading commodities in Hong Kong and Switzerland. David holds a B.A. from Emory University and an M.B.A. from Columbia Business School. He joined the MDF Board in June 2018. Read more about David, Sarah and Zoé's journey.

Haley Martinelli is an attorney in Cleveland, Ohio and lives with myotonic dystrophy type 2 (DM2). Haley was diagnosed with DM2 at the age of 23 and being the first in her family to be diagnosed, Haley turned to the Myotonic Dystrophy Foundation for information and support. She now facilitates a DM2 support group held virtually for folks living with DM2 to join from anywhere. Haley has spoken at various MDF events and in 2022 she joined the MDF Board.

Dr. Day relocated to Stanford University, as Professor of Neurology, Pediatrics and Pathology, in 2011 in order to build a comprehensive center for understanding and treating muscular dystrophy, serving as Director of Stanford’s Neuromuscular Medicine Program in the Department of Neurology and Neurological Sciences. Dr. Day remains an active member of the University of Minnesota collaborations he helped forge as Director of Minnesota’s Paul and Sheila Wellstone Muscular Dystrophy Center. He is working to integrate California and Minnesota resources with the international network of myotonic dystrophy research to assure that this most common form of muscular dystrophy is conquered as soon as possible.

Dr. Day attended medical school at the University of Minnesota, graduating in 1977. He attended graduate school at Albert Einstein College of Medicine and completed his internship in Internal Medicine in New York. He did his residency in Neurology and a Fellowship in Clinical Neurophysiology and Neuromuscular Disease at the University of California in San Francisco. In 2001, along with Laura Ranum, PhD and team, he participated in the identification and genetic characterization of myotonic dystrophy type-2 caused by a mutation on the third chromosome. He has published numerous articles on myotonic dystrophy in professional journals and is currently conducting a brain-imaging study of affected individuals. For further info on Dr. Day, visit the Stanford University website.

Dr. Robert Campagna lives with his wife Sarah and daughters Ruby and Lola in New York City. Sarah, also a physician, diagnosed herself and her daughters with Myotonic Dystrophy with a simple Google search after the family endured years of seemingly unrelated medical and neurologic problems. Since that diagnosis 10 years ago, the family has been closely involved with the Myotonic Dystrophy Foundation, raising money for the cause, advocating on Capitol Hill, and participating in various research projects at several medical centers.

Dr. Campagna received his BA from Brown University. Prior to medical school, he was a Public Health Advisor with the Centers for Disease Control, and worked on one of the earliest epidemiological studies of HIV/AIDS. He is a graduate of Cornell University Medical College, and did his post graduate training in Internal Medicine and Cardiology at New York Presbyterian Hospital. He is an Associate Professor of Clinical Medicine at Weill Cornell Medical College in New York City and is the former director of the Cardiac Care Unit at New York Presbyterian Hospital. Now in private practice, he still maintains active teaching and training responsibilities at Cornell.

Tom McPeek is a cofacilitator for the DM2 Support Group and a moderator for the DM2 Facebook Group. Unlike most regional support groups that are geographically focused, this group is for anyone diagnosed with DM2, no matter what City, State or even Country you live in. Tom was diagnosed with Myotonic Dystrophy Type 2 in 2006 and has been active with the Myotonic Dystrophy Foundation for over 10 years. He was elected to the Board in December of 2020.