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Message from the Chairman

It is with sadness that the MDF Board of Directors announces that Lisa Harvey has resigned from her role as the Myotonic Dystrophy Foundation’s Director of Community Development and Research, to pursue alternative career opportunities that will enable her to spend more time with her daughter, Kayla.

The Board wishes to thank Lisa for her key leadership role in the launch and successful growth of MDF over our first five years.  Lisa has been an amazing advocate, leader, and spokesperson in our mission to enhance the quality of life for people living with myotonic dystrophy (DM), and to maximize research efforts focused on finding treatments and a cure for this disease; through community support, education, advocacy and research. Lisa served on the Board of Directors; from January 2007 until September 2010. Lisa was our founding Executive Director from May 2008 until January 2012. During this time, Lisa provided support to families in crisis and helped drive MDF from a start-up into a thriving non-profit with the launch of its website, community forum, family information packages, annual family conference and Fund-A-Fellow program.  Lisa was a visionary leader in the formation of the organization as well as in her dedication to advancing the efforts of MDF and the interests of our patient community.  While Lisa has left the Foundation, her commitment to and advocacy for myotonic dystrophy remains as great as ever.

As with every non-profit organization, we remain laser focused on fulfilling our mission during periods of inevitable staff and board transitions. While Lisa's knowledge and empathy for families will be greatly missed, we have a strong transition plan in place under the experienced leadership of our Executive Director, Molly White, to provide ongoing support for families and provide responses to disease specific questions.  Any inquiries regarding MDF’s ongoing Fund-A-Fellow program or other programs should be directed to Molly.

We wish Lisa the best in her new career endeavors and we thank her for her inspiration and countless contributions as a leader, a mother and a friend.

Sincere regards,

Jeremy J. M. Kelly

Myotonic Dystrophy Foundation






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