The Tenacity of Hope is a documentary film made in collaboration between Living in the Light and CureCMD, showcasing members of the congenital muscular dystrophy community and their diverse journeys and perspectives. The film was originally created for CureCMD’s 2022 Patient-Focused Drug Development (PFDD) meeting with the FDA, focusing on improving outcome measures for future clinical trials in the drug development space. PFDD is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. As experts in what it is like to live with their condition, these affected individuals are uniquely positioned to advocate for their communities’ needs and inform the development of new therapies.
Cure CMD’s mission is to advance research toward treatments for the congenital muscular dystrophies and improve the lives of those living with CMD through engagement and support of the community. Living in the Light is proud to have had the opportunity to partner with them several times over the past decade.