Myotonic Dystrophy Foundation Announces Appointments to the Board of Directors
Roseville, CA, July 30, 2009 - The Myotonic Dystrophy Foundation (MDF), a patient advocacy organization, today announced recent changes to its Board of Directors. Jeremy Kelly and John Brekka were elected as the Chairman and Vice-Chairman of the Board, respectively. These roles were previously held by Shannon Lord and Barry Wald, who have stepped down from the board.
Jeremy Kelly is a founding Board member and has served as Treasurer for the past three years. He led the way in the Foundation's fundraising efforts by completing a yearlong 5,000 mile bike ride that raised over $150,000 for the MDF. After an 18 year career at JPMorgan, Jeremy recently joined the management team of Provident Funding. He lives in Mill Valley, California with his wife, Erica and two sons, Jack and Ben.
John Brekka is also a founding board member and has served as Secretary for the past three years. John helped the Foundation by lending his legal expertise to the organization and over the past 10 years he helped to form the first myotonic dystrophy type 2 (DM2) support group. John lives in Coral Springs, Florida with his wife, Flo.
Former Chairman, Shannon Lord, helped spearhead the founding of the MDF by organizing a meeting of American patients and family members at the International Myotonic Dystrophy Consortium (IDMC) in Quebec in 2005. This proved to be the formative meeting of the MDF as a non-profit foundation. Prior to that Shannon was known in the research and medical community for fundraising and speaking at international meetings related to myotonic dystrophy. She served as Chairman of the Board during its first three years. We appreciate the experience and perspective that Shannon brought to the MDF and are grateful for her generous service to our community of families, medical providers and scientists.
Former Vice-Chairman, Barry Wald, who also attended the meeting in Quebec, was instrumental in helping to craft the early strategy and mission of the MDF. We look forward to Barry’s continued service to the myotonic dystrophy community through the Foundation’s committee work.
“On behalf of the Myotonic Dystrophy Foundation and all of our community, I want to thank both Shannon and Barry for their leadership in founding our organization and steering it through its first three years. It has been a pleasure to work with them and we look forward to building on their strong legacy, says Jeremy Kelly. “A great example of this legacy is that the fact that the Foundation has just passed a major milestone – we have now raised $1.25 million in donations. This solid financial position will allow us to invest in more resources so that we can better deliver on our mission.”
Finally, we are pleased to welcome John Fitzpatrick, current Executive Director of the Texas High School Project in Austin, Texas. John brings a wealth of non-profit experience to the Board and we are pleased that he will be a part of our exciting future. John lives in Austin, Texas with his wife Kristen and his twins, Jack and Ellie.
About Myotonic Dystrophy: Described as “the most variable of all diseases found in medicine”, myotonic dystrophy, a common form of muscular dystrophy, is an inherited disorder that can appear at any age and manifests itself differently in each individual. It affects approximately 1:8,000 people worldwide and can cause not only muscle weakness, atrophy and myotonia, but also problems in the heart, brain, GI tract as well as endocrine, skeletal and respiratory systems.
About Myotonic Dystrophy Foundation: The Myotonic Dystrophy Foundation (MDF) is a patient advocacy organization dedicated to leading and mobilizing resources toward effective management, treatment and ultimately a cure for myotonic dystrophy. The foundation provides invaluable medical information, empowering families and medical providers as they navigate the disease process. The website, www.myotonic.org, and medical information provided by the foundation, is approved by members of the MDF Medical and Scientific Advisory Committee, comprised of American experts in the field of myotonic dystrophy and muscle research who together have devoted more than ninety years to the research and treatment of myotonic dystrophy. In addition, the MDF has a community website where families and caregivers meet others living with similar challenges and share information.
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For more information about the Myotonic Dystrophy Foundation, contact Lisa Vittek, Managing Director at lisa.vittek@myotonic.org or 86-MYOTONIC or 866-968-6642.
