MDF Board of Directors
The MDF Board of Directors is comprised of individuals in the business community and many either with myotonic dystrophy or living with loved ones who have the disorder. Our families represent many manifestations and varying degrees of severity of the disease, including type-1 (DM1): the congenital, childhood-onset and adult-onset; and type 2 (DM2). We are working closely with the medical community through our medical and scientific advisory committee in the belief that we can encourage them and offer insight into the subtleties of the disease. We will also recommend topics and provide funding for research by the medical and scientific community.
Jeremy Kelly, Chairman
John Brekka, Vice-Chair
John Fitzpatrick, Treasurer
The Hon. Timothy M. Kaine, Board Member
Don MacKenzie, Board Member
Ona Louisa McConnell, Board Member
Todd Stone, Board Member
Richard Weston, Board Member
Jeremy Kelly, Chairman
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.
John Brekka, Vice-Chairman
John Brekka, Vice-Chairman, 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 MDA in South Florida in 2006. John served as Secretary from 2006 to 2009.
John Fitzpatrick, Board Member
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 the 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 lives in Austin, Texas with his family.
The Hon. Timothy M. Kaine, Board Member
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Timothy Michael "Tim" Kaine, former Governor and Lieutenant Governor of Virginia, former Mayor of Richmond, Virginia and currently chairman of the Democratic National Committee. As governor, Mr. 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. Mr. Kaine endorsed the Democratic nominee, now President Barack Obama in the 2008 presidential election and was considered a possible choice to be Mr. Obama's running mate.
While Governor of Virginia, Mr. Kaine became familiar with myotonic dystrophy through his relationship with a Virginia family whose sons are affected by the disease. Because of this relationship and because of his understanding of the challenges of the disease, Mr. Kaine decided to use his experience with health-care reform legislation along with his substantial work in fundraising to help the Myotonic Dystrophy Foundation to raise awareness and funds to find a cure.
Don MacKenzie, Board Member
Don MacKenzie grew up in a large family in western Canada. He received formal training in engineering at the Colorado School of Mines in Golden, Colorado. Over time his interests have grown from oil and gas into other industries. At present he is involved with a small private Canadian foundation in the orphan disease and medical research field. Don and his wife Karen enjoy living in Calgary, Alberta, Canada with their four teenage children.
Ona Louisa McConnell, Board Member
Ona Louisa McConnell is both a US citizen and British subject. She was raised in London and Kronberg im Taunus, Germany. Ona attended local German schools for 6 years before returning to London to complete high school. While in Germany, she became fluent in German and developed a keen interest in field hockey. She was the goalie for the team that won the Hessen State Championship.
Ona continued to play field hockey as a goalie throughout high school in London. In addition to her high school's varsity team, Ona was also part of a high level UK women's team. She was coached by the UK Men's Olympic Goalie Coach and won a number of international awards.
In the spring of 2009, Ona graduated from the American School in London. In the fall she enrolled as a freshman at Yale University where she is a goalie on the varsity Division I field hockey team. Ona is intending to major in neuroscience and hopes to go to medical school.
During the summer of 2010, Ona was a paid assistant in the FMRI brain studies lab at Beijing Normal University in Beijing. The previous summer Ona worked at Oxford University in an environmental biology lab specializing in spiders and their silk production under Prof. Vollradt, a well-known arachnologist. Ona has also spent one month in 2008 working in a renowned cancer research lab at Imperial College, London.
Ona was diagnosed with myotonic dystrophy in the spring of 2010 and joined the Myotonic Dystrophy Foundation's Board of Directors later that spring. Ona's perspective as a young woman and athlete living with DM1 will bring a unique and valuable perspective to the MDF Board.
Todd Stone, Board Member
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 his asymptomatic wife, Edibell, diagnosed. Very shortly after their diagnosis they 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.
Richard Weston, Board Member
Richard Weston joined the MDF Board of Directors in 2010. Previously, he was the president and founder of the International Myotonic Dystrophy Organization (IMDO). Richard founded the IMDO following a diagnosis of myotonic dystrophy in his immediate family. In 1996, he started posting information he had found about myotonic dystrophy on a website and the IMDO grew from there. Upon joining the MDF Board Richard said, "Finding a cure for myotonic dystrophy has always been a shared goal of both organizations. As we have all begun to gain ground on that goal, the board of directors of the IMDO felt that this was the right time to direct our efforts into the MDF, resulting in a strong, efficient effort towards our shared mission."
Today, Richard is not only a member of the MDF Board of Directors, but also an avid supporter of the Myotonic Dystrophy Foundation’s Community Site where his posts are frequent, reliable, informative and supportive.
