Every Voice Speaks

Adult multidisciplinary clinics for muscular dystrophy are essential because the disease affects many body systems and causes complex cardiac, respiratory, orthopedic, and psychosocial issues that require coordinated care. These clinics bring together specialists such as neurologists, cardiologists, pulmonologists, rehabilitation experts, and social workers to improve quality of life.Patient-centered design means organizing the clinic’s space, processes, and communication around patient priorities rather than system convenience. It emphasizes partnership, autonomy, and reducing physical, emotional, and logistical challenges so that care supports each person’s life goals. To connect with our guests for questions and further discussion:Kathryn Bryant: kathryn@thespeakfoundation.comPatrick Moeschen: pmoes@comcast.netCarol Abraham: carol@lgmd-info.orgNevin Steiner: nevinsteiner@gmail.comDr. Nicholas Johnson: nicholas.johnson@vcuhealth.org

The conversation centers around the experiences of individuals living with Muscular Dystrophy, focusing on personal diagnosis stories, the challenges faced during childhood, and the importance of advocacy within the community. The hosts discuss their journeys, the evolution of understanding Muscular Dystrophy, and the founding of the Speak Foundation, which aims to amplify patient voices and support those affected by the condition.