Episode #004 - Stuck Waiting: Who Gets Left Behind in Muscular Dystrophy Drug Development?

Episode #004 - Stuck Waiting: Who Gets Left Behind in Muscular Dystrophy Drug Development?

Today, we’re asking a question that’s becoming harder to ignore: Who is the current drug development system actually built for—and who is it leaving behind? Science is advancing at an unprecedented pace, access to that science is not keeping up—and it’s not reaching everyone equally. Kat and Pat welcome bioethisist Rafael Escondon to break this all down and talk about where and how the voice of the patient fits in.

Episode #003 - Being Disabled is Expensive

This episode highlights the real financial burden of adults living with a rare chronic illness. Hosts Kat and Pat center lived experience, and connect personal stories to larger systemic issues. Episode 3 features Abby Lehner, a young woman living in Boston who helps us understand that being disabled is expensive in more ways than simply financial. To connect with our guests for questions and further discussion: Kathryn Bryant: kathryn@thespeakfoundation.com [kathryn@thespeakfoundation.com] Patrick Moeschen: pmoes@comcast.net [pmoes@comcast.net]

Episode #002 - Designed With Us: Adult MD Clinics Through Patient Eyes

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.com [kathryn@thespeakfoundation.com] Patrick Moeschen: pmoes@comcast.net [pmoes@comcast.net] Carol Abraham: carol@lgmd-info.org [carol@lgmd-info.org] Nevin Steiner: nevinsteiner@gmail.com [nevinsteiner@gmail.com] Dr. Nicholas Johnson: nicholas.johnson@vcuhealth.org [nicholas.johnson@vcuhealth.org]

Episode #001 - Uniting the Muscular Dystrophy Community

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.