Every Voice Speaks

This episode centers on married adults with LGMD and the spouses who provide care. The discussion makes room for both love and difficulty: the pride and closeness that can come from mutual support, as well as fatigue, grief, resentment, financial strain, inaccessible services, and the challenge of maintaining an equal partnership when physical needs increase.

A powerful look at adult life with limb-girdle and Becker muscular dystrophy—featuring real stories, practical insights, and honest conversations about independence, identity, and resilience. Tune in for authentic voices and a reminder that life with MD is about strength and possibility.

Join hosts Pat and Kat as they provide commentary on their discussion with Sarepta Therapeutics.

Join hosts Kat and Pat as they sit down with Dr. Louise Rodino-Klapac (Head of R&D) and Dr. James Richardson (CMO) from Sarepta. This episode shines a light on the clinical hold that the FDA has put on the company’s research into LGMD 2e. We discuss the past and the path forward as industry works to balance communication of difficult news along with trying to help families understand why the clinical trial landscape is not a straight and easy path.

Parent Project Muscular Dystrophy got its start in 1994, when Pat Furlong and a group of parents and grandparents decided they couldn’t wait any longer for progress in Duchenne research. After her sons, Christopher and Patrick, were diagnosed in 1984, Pat refused to accept that there was “no hope and little help.” In this episode, we talk about how far the field has come, the real challenges behind life-changing work, and where the community is headed next.

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.

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: [email protected]

Patrick Moeschen: [email protected]

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: [email protected]

Patrick Moeschen: [email protected]

Carol Abraham: [email protected]

Nevin Steiner: [email protected]

Dr. Nicholas Johnson: [email protected]

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.