Shortly after my diagnosis with myotonic dystrophy - nearly 20 years ago - I began facilitating support groups for adults with neuromuscular disease. Through this work and the people I've met, I've learned so much about self-care and patient advocacy. In 2016 I began producing and hosting a podcast -- http://glasshalffull.online/ -- that explores positive ways to cope with having a chronic health condition. Recently I was chosen to be on the Muscular Dystrophy Association's National Community Advisory Committee whose goal is to advise MDA on matters of importance to families living with neuromuscular diseases and help inform MDA’s efforts to support individuals to live unlimited.
I’m a Patient Leader