Lisa Harvey-Duren was the Myotonic Dystrophy Foundation founding Executive Director from 2008 to 2012 and served on the founding Board of Directors from 2007 to 2010. Lisa’s daughter Kayla was born in July 2005 with the severe congenital form of myotonic dystrophy. Kayla’s life has been a catalyst for Lisa’s dedication to the MDF’s mission and advocacy to find treatments and a cure for myotonic dystrophy.
In 2014, Kayla and Lisa testified before the U.S. Senate Health, Education, Labor, and Pensions (HELP) committee to raise awareness about congenital DM and urge congressional passage of legislation reauthorizing of the MD-CARE Act. Following their testimony, the bill to expand federal support for muscular dystrophy research and patient care, including establishing and maintaining Paul D. Wellstone Centers of Excellence, was signed into law by President Obama on September 26, 2014. Sadly, Kayla passed away at age 13 in her sleep in the early morning hours of Tuesday, April 9, 2019, at home. Since Kayla’s passing, the MDF created the Kayla Vittek Community Award for Advocacy which honors other advocates in our community.
Lisa was born in Tokyo, Japan where she spent her childhood and attended the American School in Japan (ASIJ). She received her Bachelor of Science in Business from Auburn University where she played varsity athletics. After several years in the private sector, Lisa earned an International MBA in Marketing and Japanese from the Thunderbird School of Global Management. After graduation, Lisa was a Senior Product Manager at eBay and during her tenure she received the prestigious all-company Jeff Skoll Community Award for excellence.
Currently, Lisa is an independent patient advocate helping families navigating the complexities of myotonic dystrophy clinical trials. Lisa is also a member of the Community Advisory Board (DM CAB) trained and coordinated by Eupati Spain using the Eurordis CAB model.
