Podcast DNA Today : Acidémie propionique et méthylmalonique avec HemoShear Therapeutics
Reproduit avec l'autorisation de DNA Today
Bryan Kelly who lives with propionic acidemia. and Dr. Pat Horn, Chief Medical Officer at HemoShear.
Learn About Propionic and Methylmalonic Acidemia
Propionic and Methylmalonic Acidemia (PA and MMA), including an investigational therapy, are explored in this episode. Host Kira Dineen is joined by patient advocate, Bryan Kelly, and HemoShear Therapeutics CMO, Dr. Pat Horn.
Bryan Kelly a 36 ans et vit avec l'acidémie propionique. Il est une grande source d'inspiration pour les patients et les soignants, car il trouve des moyens de vivre une vie épanouie, malgré le fardeau de sa maladie. Bryan utilise des techniques de yoga et de méditation pour soulager la douleur et est actif sur les médias sociaux, s'adressant régulièrement à la communauté de l'AP.
Dr. Pat Horn is the Chief Medical Officer of HemoShear Therapeutics. His company is developing a potential new treatment for the two rare metabolic diseases we are talking about in this episode- propionic acidemia and methylmalonic acidemia. He practiced for 20 years as a pediatrician and has spent the last two decades working with biotechnology companies developing new treatments for rare diseases.
Dans cet épisode, nous discutons :
Comment l'acide propionique et l'acide méthylmalonique affectent-ils le corps ?
Dépistage et diagnostic des PA et MMA
Pronostic, durée de vie et qualité de vie des personnes atteintes d'AP ou de MMA
L'objectif de la thérapie d'investigation d'HemoShear (HST5040) qui est actuellement en cours de développement
Pourquoi des études comme HERO sont importantes pour la communauté PA et MA
Vivre avec l'AP
La pleine conscience et la gestion d'un diagnostic
Pourquoi la FDA a tendance à accélérer les thérapies qui ciblent les maladies orphelines/rare.
If you’re interested in learning more about HemoShear’s HST5040 therapy for PA and MMA, check out this Fact Sheet, and learn more about the HERO study at clinicaltrials.gov (NCT04732429) or mma-pahero.com. Hemoshear is also conducting the JUMP (Journey to Understand MMA and PA) Study A Natural History Study which you can learn more about here.
Stay up to date with the latest developments in their trials by following HemoShear on Twitter and LinkedIn. To learn more about Bryan’s journey with PA and mindful meditation, visit his website, and be sure to follow Be Present Lifestyle on Twitter, Facebook, and Instagram.
Stay tuned for the next new episode of DNA Today on June 17, 2022, where we’ll hear from Erica Peacock and Orion Buske about building inclusive pedigrees! Our following episode on June 24th will be a continuation of this conversation with diversity and inclusion advocate and hereditary cancer genetic counselor at Genome Medical, Joanna Mercado, and transgender patient advocate, Holden Bender-Bernstein. Can’t wait? Tune in live to the recording on Thursday, June 24th. Register for free here.
New episodes are released on Fridays. In the meantime, you can binge over 185 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.
DNA Today est animé et produit par Kira Dineen. Notre responsable des médias sociaux est Corinne Merlino. Notre responsable vidéo est Amanda Andreoli.
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