When Lisa Harvey-Duren, founding executive director of Myotonic, tragically lost her 13-year-old daughter Kayla Vittek to heart-related complications of the disease in April 2019, she launched a fundraising campaign benefiting Myotonc on Facebook, which to date has raised over $18,000 to help drive Care and a Cure for myotonic dystrophy. A lovely and moving tribute to Kayla’s life can be read here.
To honor and acknowledge Kayla’s numerous appearances to help raise awareness and funds for myotonic dystrophy research and care, and Lisa’s long-time commitment to the foundation and the DM community, Myotonic will be presenting the Kayla Vittek Memorial Award for Outstanding Community Advocate at the 2019 Myotonic Annual Conference. Nominations for the award have been submitted by Myotonic’s advocacy team in Washington, DC to the Myotonic Board of Directors, which will make the final outstanding advocate selection. We hope you can join us in Philadelphia in September for this award presentation, either in person or via the conference Livestream. Our hearts go out to Lisa and her family for this completely devastating loss, and we are deeply grateful for her ongoing commitment to Care and a Cure.