Every Voice Speaks – Détails, épisodes et analyse

Détails du podcast

Informations techniques et générales issues du flux RSS du podcast.

Every Voice Speaks

The SPEAK Foundation

Business & Entrepreneuriat

Forme & Santé

Fréquence : 1 épisode/27j. Total Éps: 7

Every Voice Speaks unites and empowers the muscular dystrophy community by elevating patient voices and fostering collaboration across conditions like LGMD, FSHD, myotonic, Becker and Duchenne. Through personal stories, expert interviews, and accessible discussions, the show helps listeners understand drug development and learn how their input can influence trials, policies, and care. By centering lived experience, it strengthens advocacy, advances research, and supports better futures for kids and adults living with muscular dystrophy.

Lire plusRéduire

Site

RSS

Apple

Données mises à jour le 14/07/2026

Classements récents

Dernières positions dans les classements Apple Podcasts et Spotify.

Apple Podcasts

Spotify

Aucun classement récent disponible

Liens partagés entre épisodes et podcasts

Liens présents dans les descriptions d'épisodes et autres podcasts les utilisant également.

Aucun lien partagé par ce podcast

Qualité et score du flux RSS

Évaluation technique de la qualité et de la structure du flux RSS.

Qualité du flux RSS

À améliorer

Score global : 63%

Historique des publications

Répartition mensuelle des publications d'épisodes au fil des années.

Year

Derniers épisodes publiés

Liste des épisodes récents, avec titres, durées et descriptions.

Commentary on Episode 6 - "Industry Deep Dive with Sarepta Therapeutics"

Saison 1 · Épisode 7

samedi 11 juillet 2026 • Durée 17:44

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

Industry Deep Dive With Sarepta Therapeutics

Saison 1 · Épisode 6

vendredi 10 juillet 2026 • Durée 44:10

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.

Lire plusRéduire

Episode #005 - The Muscular Dystrophy Landscape: 40 Years of Progress

Saison 1 · Épisode 5

jeudi 4 juin 2026 • Durée 01:00:21

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.

Lire plusRéduire

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

Saison 1 · Épisode 4

vendredi 15 mai 2026 • Durée 44:38

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.

Lire plusRéduire

Episode #003 - Being Disabled is Expensive

Saison 1 · Épisode 3

lundi 6 avril 2026 • Durée 57:01

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

Patrick Moeschen: pmoes@comcast.net

Lire plusRéduire

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

Saison 1 · Épisode 2

lundi 2 mars 2026 • Durée 43:21

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

Patrick Moeschen: pmoes@comcast.net

Carol Abraham: carol@lgmd-info.org

Nevin Steiner: nevinsteiner@gmail.com

Dr. Nicholas Johnson: nicholas.johnson@vcuhealth.org

Lire plusRéduire

Episode #001 - Uniting the Muscular Dystrophy Community

Saison 1 · Épisode 1

mercredi 28 janvier 2026 • Durée 34:48

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.

Lire plusRéduire

Podcasts Similaires Basées sur le Contenu

Découvrez des podcasts liées à Every Voice Speaks. Explorez des podcasts avec des thèmes, sujets, et formats similaires. Ces similarités sont calculées grâce à des données tangibles, pas d'extrapolations !

Il n'y a pas de contenu associé à ce podcast.

À propos Méthodologie Contact Me soutenir Politique de confidentialité Mentions légales

Every Voice Speaks – Détails, épisodes et analyse

Détails du podcast

Classements récents

Apple Podcasts

Spotify

Liens partagés entre épisodes et podcasts

Qualité et score du flux RSS

Historique des publications

Derniers épisodes publiés

Podcasts et contenus similaires

Podcasts Similaires Basées sur le Contenu

Podcasts Similaires Basées sur le Contenu

Apple Podcasts

Spotify