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Take on Duchenne Podcast: A Mother and Carrier of Duchenne Muscular Dystrophy Shares Her Journey

May 1, 2023

  1. Take on Duchenne Podcast: A Mother and Carrier of Duchenne Muscular Dystrophy Shares Her Journey

    Elizabeth’s journey with Duchenne Muscular Dystrophy (DMD) began when her son was diagnosed at the age of five. In this episode, Elizabeth reflects on the diagnosis of her son, her daughter’s and her own carrier diagnosis, family life, her coping mechanisms and management of the disease. Although her and her family’s lives have been impacted…

  2. Take on Duchenne Podcast: Cardiomyopathy Associated with Duchenne Muscular Dystrophy

    In this episode with Dr. Linda Cripe, we learn more about cardiomyopathy associated with Duchenne Muscular Dystrophy (DMD). We discuss care consideration and management strategies especially pertinent for manifesting DMD carriers and why screening and monitoring is so important. What more could be done to support carrier moms? Listen to the podcast to learn more.…

  3. Take on Duchenne Podcast: Women & Duchenne

    We are dedicating this episode to ‘Women & Duchenne’ in honor of World Duchenne Awareness Day which takes place every September 7. Tune in to hear from three incredible women: a clinical expert, a mother who is also a carrier and caregiver, and a scientist share their knowledge, perspectives and experiences. Each has a set…

  4. DMD: continuum of disease and importance of continuation of care, relating to Cardiopathology

    Dr. Chet Ridall Villa from Cincinnati Children’s Hospital Medical Center specializes in Cardiomyopathy, Heart Failure, and Transplantation and is particularly passionate for taking care of children and young adults with Duchenne muscular dystrophy (DMD), RASopathies, and those in need of ventricular assist device therapy and heart transplant. Together with Dr. Villa in this episode we…

  5. DMD: continuum of disease and importance of continuation of care

    This episode is dedicated to discussing Duchenne Muscular Dystrophy (DMD) continuum of disease and importance of continuation of care in Duchenne Muscular Dystrophy (DMD). Hear from our expert guest speaker, Dr. Mayer from Children’s Hospital of Philadelphia (CHOP) about the recommended DMD standard of care guidelines with regards to ongoing patient management and care. Return…

  6. Transition to Adult Care in DMD, the Social Perspective

    As more and more boys and young men with DMD are transitioning into adulthood, there is an increasing emphasis on quality of life and psychosocial management. In this episode, we are joined by Sarah Stoney, licensed social worker from Children’s Hospital of Philadelphia for a discussion about considerations and strategies for social aspects of care.…

  7. Transition to Adult Care in DMD with Dr. Lauren Elman

    Dr. Elman is an adult neurologist at the University of Pennsylvania, in this episode she shares her experience and important considerations for a successful transition to adult care in Duchenne muscular dystrophy (DMD). In the last decade, improvements in DMD care and therapeutic strategies have contributed to better patient outcomes and prolonged patient survival. Today,…

  8. Evolving Care in Duchenne Muscular Dystrophy (DMD)

    In this podcast episode, our guest speaker Dr. Diana Castro, associate professor of pediatrics, neurology and neurotherapeutics at the University of Texas Southwestern, shares her extensive clinical knowledge and discusses the clinical, diagnostic and medical landscape in Duchenne muscular dystrophy (DMD). In addition, she speaks about management approaches in the care of DMD. Return to…

  9. Adult Life and Duchenne Podcast – #DuchenneCan

    In this episode, we meet three fantastic, young men who live with Duchenne muscular dystrophy, and who, by following their interests, have developed exciting lives and careers. Björn Jönsson is self-employed with a strong commitment to the Swedish Foundation for Muscular Dystrophy Research, among other causes. He also works with gaming development under the motto…