Shows
Nervennahrung Neurologie PodcastNeuromuskuläre Erkrankungen - Fokus Duchenne Muskeldystrophie | Nervennahrung Podcast 049
Prof. Tobias Ruck begrüßt als Gast Frau Dr. Andrea Gangfuß, um mit ihr über den aktuellen Stand bei neuromuskulären Erkrankungen zu sprechen. Einen besonderen Fokus legen die Beiden dabei auf die Duchenne-Muskeldystrophie. Erfahren Sie, welche aktuellen Forschungsergebnisse und Therapieansätze Hoffnung für Patient:innen und Angehörige bieten. | Der Nervennahrung Podcast (049) aufgezeichnet März 2025
Folgende Themen werden im Verlauf des Gesprächs zwischen Herrn Prof. Ruck und Frau Dr. Gangfuß angesprochen:
(00:00) Start und Intro
(00:35) Vorstellung Dr. Andrea Gangfuß
(01:27) Was versteht man unter neuromuskulären Erkrankungen?
(03:20) Aktuelle Entwicklungen bei Erbkrankheiten
(06:53) Fokus: Was ist die Duchenne-Muskeldystrophie?
(09:46) Der Status Qu...2025-06-1826 min
Pass the MSRA: Free PodcastsNeuro: Duchenne Muscular Dystrophy: Free MSRA Podcast🧬 FREE MSRA PODCAST – Duchenne Muscular Dystrophy (DMD)🎧 In this neurology deep dive, we decode Duchenne muscular dystrophy – from genetics to diagnosis to multidisciplinary management. If you’re preparing for the MSRA, this episode breaks down the core facts, pathophysiology, and high-yield clinical features straight from exam-focused revision notes.🧠 Key Learning Points📌 Definition• Severe X-linked recessive genetic disorder causing progressive muscle degeneration.• Mutation in the dystrophin gene → lack of dystrophin protein → unstable muscle fibres → weakness.📌 Genetics & Pathophysiology• X-linked inheritance → affects boys; 50% risk for sons of carrier mothers.• Dystrophin = shock absorber for muscle fibres.• With...2025-06-0815 min
The Akari Foundation PodcastEp. 42 - Voces de Fortaleza: De Hermana a Madre de un Niño con DuchenneBienvenidos a un nuevo episodio de The Akari Foundation Podcast. En el podcast hemos conocido historias de familias con más de un hijo Duchenne en casa, pero en este episodio, nuestra invitada Claudia Fernández nos cuenta sobre su vida con su hijo con Duchenne llamado Ignacio, sumado al dato interesante de que ella tuvo un hermano mayor con el mismo diagnóstico, quien considera la preparó para lo que vendría en el inesperado futuro con la llegada de un hijo con DMD.Más información sobre el espíritu activista de Claudi...2025-04-1459 min
Base to Base BiotechBase to Base biotech podcast 3: Nanoparticles and Duchenne muscular dystrophyInterview timestamps: 02:20 Satellos 26:00 EVŌQ NanoAntibiotic-resistant infections are a top 10 global health threat demanding urgent innovation.A US-based nanotech company, EVŌQ Nano, has developed a novel nanoparticle that destroys bacteria from the inside – without triggering antimicrobial resistance (AMR).The nanoparticle is already in development for an inhaled therapeutic for Cystic Fibrosis patients, as well as for antimicrobial medical devices and treatment of the surface of textiles. It is also being earmarked for applications in energy and agriculture.The company’s multi-patented, high-volume laser nanofabrication process create...2025-04-0452 min
The Stem Cell PodcastEp. 291: “Functional Precision Medicine” Featuring Dr. Scott YoungerDr. Scott Younger is the Director of Disease Gene Engineering within the Genomic Medicine Center at Children's Mercy Hospital. His research focuses on producing patient-derived cellular models to develop functional precision medicine. He talks about using personalized antisense oligonucleotides to reverse disease phenotypes in organoid models of Duchenne muscular dystrophy. He also discusses his lab's personal connections to the rare disease community and the opportunities for collaborations with clinicians at Children's Mercy.2025-04-011h 25
The Handicapable PodcastThe Handicapable Podcast: S2 E7: Navigating LifeOn today's episode of The Handicapable Podcast, Adam and Dr. Tye. D. Martin, have a conversation all about navigating life as individuals living with physical disabilities. For those of you who have been around since episode 1, Dr. Martin was our first guest to be on our show. Tye received his PhD in Biomedical Engineering from New Mexico State University in 2019 with a focus on Alzheimer's and adaptive design for people with disabilities! Tye also has Duchenne Muscular Dystrophy and has been a voice for equality in the disability community. He is also an ambassador for the Muscular Dystrophy Association as...2025-02-2853 min
Locked On Senators - Daily Podcast On The Ottawa SenatorsInjuries Overshadow Ottawa Senators Loss To Montreal Canadiens + Interview with Jenner JensenThe Ottawa Senators did not get back from the break the way they hoped, as the losing streak is extended to four games.Brandon Piller and Ross Levitan try to cope with the losing skid and how injuries to star players are affecting the playoff race. We have an awesome interview with Jenner Jensen, wife of Sens player Nick Jensen! Jenner tells us about the trade in the off-season, how long she has known Nick and all about raising awareness for a good cause supporting care for Duchenne Muscular Dystrophy (DMD)!Follow the show on T...2025-02-2441 min
The Handicapable PodcastThe Handicapable Podcast: S2 E6: Finding PurposeOn today's episode of the Handicapable Podcast, we discuss finding your purpose in life with Adam Wechsler. Adam Wechsler has Duchenne muscular dystrophy and is part of the Parent Project Muscular Dystrophy Adult Advisory Committee with me. We want to help you find your purpose so that you can have a happy and fulfilling life!
Intro music by Pat Moeschen
The Handicapable Podcast Companion Site: www.hcpod.com
Hosted by Adam Malone
Executive produced by Adam Malone and Kyle Friar
Produced by Cody Chalfan2025-02-1432 min
Imagine Yourself PodcastFrom Stuck to Thriving: The Power of the Pivot (w/ Andrea Miller)Discover the transformative power of the pivot with Andrea Miller. After her son was diagnosed with Duchenne muscular dystrophy, Andrea faced a life-altering challenge that reshaped her mindset and approach to change. Guided by her faith in God and her inspiring mantra, “Today, Not Tomorrow” (TNT), Andrea found the strength to navigate life’s uncertainties with purpose and courage. In this episode, Andrea shares her remarkable journey, revealing the strategies, lessons, and moments of trial and error that helped her thrive. From asking the right questions to embracing imperfection, her insights are a mastercl...2025-01-1837 min
The Handicapable PodcastThe Handicapable Podcast: S2 E2: Hope and PurposeOn today's episode of The Handicapable Podcast, Adam interviews Dr. Ryan Russell, Ph.D. Ryan lives in Kansas City, Missouri and has Duchenne muscular dystrophy. Ryan has a PhD in Psychology, Master of Education and is a health and mindset coach with his wife Angela. Ryan and Angela offer their services through their site, lifeonpositivity.com, where they help people live their best lives. He and his wife also have a podcast launching soon on their site. Ryan has not let his disability stop him from pursuing his passion and does not take no for an answer. He wants to...2025-01-171h 05
The Akari Foundation PodcastEp. 35 - Rocío Jácome: Una Madre que ya Experimentó 3 Momentos Importantes del Proceso DuchenneBienvenidos a un nuevo episodio de The Akari Foundation Podcast. En las historias que hemos escuchado por parte de papás y mamás Duchenne, aprendimos que algunos han vivído puntos clave de tener un hijo con enfermedad rara, como llegar a fundar una organización, haber pasado por la pérdida terrenal de un hijo, o incluso traer al mundo a no uno sino dos hijos con Duchenne. Rocío Jácome es una madre ecuatoriana que ya le tocó experimentar esos 3 acontecimientos, y nos platica su historia y lecciones de vida para los que pierden la espera...2025-01-061h 07
RARE à l'écouteMaladie rare - Vivre avec une Myopathie de Duchenne5ème épisode / 5, de la série sur la dystrophie musculaire de Duchenne
Episode 5 : Vivre avec une Myopathie de Duchenne.
Invitée :
Mme Malaterre, responsable du groupe d'intérêt Duchenne-Becker à l’AFM-Téléthon.
https://www.afm-telethon.fr/fr
1️⃣ Quelles sont les circonstances de découverte de la myopathie de Duchenne ? [0’25 – 1’41]
✔️ Deux garçons atteints de myopathie de Duchenne.
✔️ Découverte de la maladie avec l’aîné.
Pour plus d’informations, retrouvez notre page article : https://rarealecoute.com/la-dystrophie-musculaire-de-duchenne/
2️⃣ Comment s’est déroulé le diagnostic ? [1’42 – 2’36]
✔️ Suspicion...2024-10-1409 min
RARE à l'écouteMaladie rare - Prendre en charge la Myopathie de Duchenne4ème épisode / 5, de la série sur la myopathie de Duchenne.
Episode 4 : Prendre en charge la Myopathie de Duchenne.
Invitée :
Dr Juliette Ropars, neuropédiatre, praticien hospitalier au sein du service de neurologie du CHU de Brest, coordinatrice de la RCP nationale et de la commission essais thérapeutiques pédiatriques de la filière Filnemus, responsable du site pédiatrique du CRMN (Centre de référence Maladies Rares Maladies Neuromusculaires) Atlantique Océanie Caraïbes de Brest, affilié à la filière Filnemus.
https://crmn.chu-brest.fr/
https://www.filnemus.fr/
...2024-10-0715 min
RARE à l'écouteMaladie rare - Diagnostiquer une Myopathie de Duchenne2ème épisode / 5, de la série sur la dystrophie musculaire de Duchenne
Episode 2 : Diagnostiquer une Myopathie de Duchenne.
Invitée :
Dr Caroline Espil-Taris, neuropédiatre, praticien hospitalier au sein du service de neurologie pédiatrique du CHU de Bordeaux, responsable du site pédiatrique au centre de référence Maladies Rares Maladies Neuromusculaires Atlantique-Occitanie-Caraïbes de Bordeaux affilié à la filière Filnemus, et membre de la commission essais thérapeutiques de la filière Filnemus.
https://www.chu-bordeaux.fr/Patient-proches/Maladies-rares/Maladies-neuromusculaires/
https://www.filnemus.fr/
1️⃣ Quel tableau clinique doit fa...2024-09-2306 min
Dad to Dad PodcastSFN Dad To Dad 341 - Nate Plasman of Lombard, IL Father of Three Including A Son With Duchenne Muscular DystrophyOur guest this week is Nate Plasman of Lombard, IL, a vice president at family owned Monroe Transportation and father of three, including a son with a rare genetic disease.Nate and his wife, Sara, have been married for 20 years and are the proud parents of three children: Grace (15), Jackson (12) and Andrew (10) who has Duchenne Muscular Dystrophy, a progressive and severe muscle-wasting condition that typically results in premature death.Duchenne impacts around 15,000 individuals in the United States, predominantly males, and over 300,000 globally. It is a condition that transcends cultural, economic, and social lines, affecting families worldwide.2024-09-2053 min
Rare 5, Rare Spotlights: Explorando enfermedades raras en 5 minutos7 de septiembre, día mundial de la distrofia muscular DuchenneBienvenidos y bienvenidas a un nuevo episodio de nuestro podcast. Hoy, 7 de septiembre, Día Mundial de la Distrofia Muscular Duchenne (DMD), es una oportunidad para crear conciencia sobre esta enfermedad genética rara que afecta a miles de niños y familias en todo el mundo y nos acompaña la Dra. Natalia Inés Morales Fonseca, para hablar del tema. La Distrofia Muscular Duchenne es una enfermedad genética rara que provoca la degeneración progresiva de los músculos. Afecta principalmente a niños, ya que está ligada al cromosoma X, y se debe a una...2024-09-0705 min
EURO HEALTH PodcastDimitrios Athanasiou: Rare diseases, not as rare as you thinkHow rare are rare diseases? We asked Dimitrios Athanasiou, a prominent rare diseases patient advocate, president of Rare Diseases Greece and founder of 95 Rare Alliance Greece, and member of the Patients and Consumers Working Party in the European Medicines Agency.In this episode, Mr. Athanasiou reveals that what we think we know about rare diseases is just the tip of the iceberg. Not only do rare diseases affect a far larger number of people than we might imagine, but there is also much more complexity behind their diagnosis and treatment. Accessibility to care, diagnosis and treatment are...2024-08-2237 min
The Akari Foundation PodcastEp. 25 - Conociendo a Nuestra Amiga Akari y Mamá Duchenne: La Dra. Fabiola LosoyoBienvenidos a un nuevo episodio de The Akari Foundation Podcast. La salud mental durante el proceso Duchenne es algo que muchas familias suelen pasar de largo o atender hasta después de priorizar cuestiones físicas, y en The Akari Foundation uno de los recursos valiosos que ofrecemos a nuestras familias y pacientes es la atención de la Dra. Fabiola Losoyo con vasta experiencia en Psicología y Tanatología para afrontar los temas difíciles que implican los efectos del Duchenne. La Dra. Fabiola Losoyo además entiende el proceso de una manera más personal...2024-08-191h 04
The Handicapable PodcastThe Handicapable Podcast: S1 E1: Dr. Tye D. Martin Ph.DOn this episode of The Handicapable Podcast, Adam interviews Dr. Tye D. Martin Ph.D. Dr. Martin received his Ph.D from New Mexico State University in 2019. He has an unconfirmed diagnosis of Duchenne Muscular Dystrophy and is an advocate for the disability community. Dr. Martin is an ambassador for the Muscular Dystrophy Association (MDA), and a board member for Laughing at My Nightmare Inc. They discuss many topics surrounding the disability community, including dating, travel, marginalization, and more! Join us for a deep dive into the world of the disability community on this episode of The Handicapable Podcast!2024-08-161h 51
Desse Jeito PodcastSALVE O MIGUEL - Patricia & Elton - Desse Jeito Podcast #024No episódio especial de hoje, conversamos com Patrícia e Elton, pais do pequeno Miguel, um garoto de 7 anos diagnosticado com Distrofia Muscular de Duchenne. Eles estão em uma batalha incansável para angariar os 17 milhões de reais necessários para adquirir a medicação inovadora ELEVIDYS.
Esta esperança de tratamento não só promete qualidade de vida, mas também a oportunidade de Miguel viver de forma saudável, desafiando os obstáculos impostos pela doença. Acompanhe conosco a inspiradora história de determinação e amor de Patrícia, Elton e Miguel, e descubr...2024-07-261h 03
The Akari Foundation PodcastEp. 22 - Platica Sobre la Vida Después de Un Hijo Duchenne y Dos Organizaciones Que Trascienden FronterasBienvenidos a un nuevo episodio de The Akari Foundation Podcast. En este capítulo presentamos a dos invitadas a la vez: Azucena Lopez, líder de la Fundación Binacional Duchenne San Diego, compartiéndonos la inspiradora historia de vida con Duchenne de su hijo Ramiro, antes de mudarse, como a ella le gusta referirse, de este mundo terrenal; y a Mónica Paredes, fundadora de Asociación Duchenne Tijuana, con la historia Duchenne de su hijo José Martín. Ambas colaboran mano a mano principalmente en la frontera de la costa este de Estados Unidos y México para a...2024-07-081h 09
Rare Care PodcastAn Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.2024-07-0108 min
The Akari Foundation PodcastEp. 21 - Graciela Mendez: Inspirada Tía Duchenne y Fundadora de EnlaceBienvenidos a un nuevo episodio de The Akari Foundation Podcast. De las personas que hacen montones por la comunidad Duchenne, uno de los nombres que más resuenan es el de Graciela Mendez, una tía Duchenne inspirada en la experiencia con su sobrino Lalo, y fundadora de Enlace, una organización que ayuda a niños, jóvenes y adultos con distrofias musculares Duchenne y Becker. En este episodio nos cuenta su historia motivadora y con mucha esperanza nos comparte sobre las vidas de muchachos Duchenne que han superado barreras de esta enfermedad.Para contactar a la Fu...2024-06-2449 min
Anatomy Of IllnessEpisode 17: Duchenne Muscular Dystrophy - Calves that Aren’t from the GymDuchenne Muscular Dystrophy: What is it, what are the symptoms, and how do we treat it? This episode will cover the history, genetics, and testing for Duchenne Muscular Dystrophy.
Check out our website: https://anatomyofillness.com/
Muscular Dystrophy Association: https://www.mda.org/
Duchenne UK: https://www.duchenneuk.org/
Duchenne Australia: https://www.duchenneaustralia.org/
References:
https://pubmed.ncbi.nlm.nih.gov/14506712/
https://www.ncbi.nlm.nih.gov/books/NBK482346/
https://link.springer.com/chapter/10.1007/978-3-319-17362-7_2...2024-06-1315 min
Vista PanorámicaVista Panorámica T5#5Conversamos con Pablo Pizarro, vocero del movimiento Vida Digna, por la crisis habitacional que existe en el país. Fondo Alquimia abre convocatoria 2024 para mujeres, niñas y disidencias que promuevan proyectos con enfoque en derechos humanos. Boletín LGBTIQA+, recordamos a José Matías, joven que se suicidó por violencia escolar por su orientación sexual. Movilización U.Chile por Palestina.Documental "Malqueridas", narra la historia de mujeres madres privadas de libertad.Crónica sobre la caminata y la concientización sobre Duchenne.2024-05-2254 min
Beyond Biotech - the podcast from LabiotechNew ways to treat Duchenne muscular dystrophyDuchenne muscular dystrophy (DMD) is a genetic disorder with progressive muscle degeneration and weakness due to changes in the protein dystrophin, which helps keep muscle cells intact. There are few treatments for DMD, although recent advances mean that males – who are primarily affected by DMD – can now sometimes survive into their 30s.More drugs are being developed in the fight against DMD, and this week we had a conversation with Frank Gleeson, CEO of Satellos Bioscience, about recent work on addressing DMD, including the company’s own work in the field.2024-05-0323 min
Rare Care PodcastAn Interview With Pediatric Neurologist Edward Smith, MD, on the FDA Approval of Vamorolone for Boys With Duchenne Muscular Dystrophy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews pediatric neurologist Edward Smith, MD, about the recent approval of vamorolone, a synthetic corticosteroid, in boys with Duchenne muscular dystrophy.2024-04-2515 min
NeurologyLive® Mind Moments®Special Episode: FDA Approval of Givinostat for Duchenne Muscular DystrophyWelcome to this special episode of the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. For major FDA decisions in the field of neurology, we release short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question.
In this episode, we're covering the recent approval of givinostat (Duvyzat; Italfarmaco) for the treatment of Duchenne muscular dystrophy (DMD). The therapy, a proprietary histone deacetylase (HDAC) in...2024-03-2912 minRare Care PodcastAn Interview With Matt Trudeau of ITF Therapeutics, on Givinostat as a Therapy for Duchenne Muscular DystrophyLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Matt Trudeau, head of ITF Therapeutics—a division of Italy's Italfarmaco—on treating Duchenne muscular dystrophy with givinostat, a histone deacetylase inhibitor.2024-03-2209 min
The Akari Foundation PodcastEP. 14 - Voces de Fortaleza: La Familia Noriega y el Desafío DuchenneBienvenidos a un nuevo episodio de The Akari Foundation Podcast. Desde que nació la idea de este podcast, donde frecuentemente hablamos sobre recursos y nos visitan organizaciones y profesionales médicos, contemplamos invitar también a familias Duchenne; pacientes, papás, mamás y familiares que se han acercado a Akari y juntos les ayudamos en la lucha contra el DMD. En esta entrega presentamos un episodio de Voces de Fortaleza, una serie especial donde los protagonistas comparten sus historias con las que otras familias Duchenne se identificarán. En este capitulo nos acompaña Rachel, mamá Duc...2024-03-181h 03
Take On Duchenne - North AmericaNutrition and DuchenneIn this podcast episode we are discussing the topic of Nutrition and Duchenne with our guest speaker, Dr. Kindann Fawcett, Behavioral Health Scientist, Dietitian and Caregiver to her son with Duchenne Muscular Dystrophy. Our conversation with Dr. Kindann Fawcett explores;· the importance of healthy nutrition· the common nutritional deficits seen in patients· the fundamental nutritional elements for those with DMD· weight management· advocacy for people with Duchenne Tune in to learn more about this topic.US-EMF-0430 I November 2023Trademarks, registered or otherwise, are the prop...2023-12-1540 min
ABCs of AnaesthesiaDuchenne's Muscular Dystrophy - Final Exam VivaThanks Dr Ralph for a great exam performance!For the FULL video check out https://anaesthesia.thinkific.com/courses/FinalExamThe Stem13yo male presents to emergency department in a small rural hospital (2 theatres, 1 ward, no HDU/ICU) with right iliac fossa abdominal pain. Past historyDuchenne’s muscular dystrophyWheelchair boundSevere scoliosis50kg recent weightVitalsHR 110 SRBP 100/70Sats 95% or 2L NP oxygenResp rate 40Temp 37.4 BloodsFBE 120WCC 13 x 109/LPlt 400 x 109/L2023-11-1428 minNeurologyLive® Mind Moments®Special Episode: FDA Greenlights Vamorolone for Duchenne Muscular DystrophyWelcome to this special episode of the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. For major FDA decisions in the field of neurology, we release short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question.
In this episode, we're covering the recent approval of vamorolone (Agamree; Santhera Pharmaceuticals) oral suspension 40 mg/mL for the treatment of patients with Duchenne muscular dystrophy (DMD) ag...2023-11-0710 min
The podcast series Take on DuchenneEpisode #11: Breaking barriers and living life to the fullestPhilip Højgaard-Olsen, born and raised in Sidney, Australia, moved to Denmark in his late teens eager to live a more independent life despite having Duchenne muscular dystrophy. In Denmark, he was foremost inspired by the way they accessed their own living, apartments, and vehicles to move around. The Egmont Høiskolen played an important role opening his eyes to possibilities.
In this episode Philip shares his thoughts about challenges in life and how to approach problems with a different lens.
SE-DMD-03382023-09-0125 min
First Opinion Podcast81: One Duchenne patient's bittersweet hope for new treatmentDuchenne muscular dystrophy is a devastating disease and, until very recently, was one without much hope. When Hawken Miller was diagnosed at age 5, the physician told his parents to enjoy the time they had with him, as there wouldn't be much. Over 20 years later, Miller is a journalist and content strategist for CureDuchenne, an organization started by his mother when he was diagnosed, and new treatment is on the horizon. Last month, the FDA approved a new gene therapy from Sarepta Therapeutics that will provide hope for many patients and families. The new drug, however, has its limitations — it's only ap...2023-07-1227 minNeurologyLive® Mind Moments®Special Episode: SRP-9001 Approved As First Gene Therapy for Duchenne Muscular DystrophyWelcome to this special episode of the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. For major FDA decisions in the field of neurology, we release short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question.
In this episode, we're covering the recent approval of SRP-9001, or delandistrogene moxeparvovec (Elevidys; Sarepta) in Duchenne muscular dystrophy (DMD). Offering commentary is Natalie Goedeker, CPNP, a nu...2023-06-2212 min
Podcast RÄÄGIME14. Jüri Lehtmets: oluline on keskenduda sellele, mida sa teha saadSeekordseks saatekülaliseks on mees, kellel on diagnoositud lihaseid nõrgestav geneetiline haigus nimega Duchenne'i lihasdüstroofia.
Paljud seda haigust põdevad inimesed ei näe oma 18ndat sünnipäeva. Jüri, on aga hoopis teisest puust mees. Tema elujaatav hoiak ja mõtteviis, jonnakas optimism ja tohutu teotahe ning leidlikkus lahenduste otsimisel on äärmiselt muljet avaldav!
Oma raamatus "Kohanemise meistriklass" kirjutab Jüri sellest, kuidas ravimatust haigusest hoolimata oli ta alati võimalikult palju kaasatud kõikvõimalikesse ettevõtmistesse. Suurt rolli tema mõtteviisi ja hoiakute kujunemisel mängisid vanemad, kes sõna otseses mõttes võtsid "Ülima vastutuse...2023-05-171h 13The podcast series Take on DuchenneEpisode #10: To be pushed out of your comfort zone – from isolation to achieving personal growthListen to Sigge, 16, and his dad Martin Stengård, who talk about how Sigge has developed from being introvert and scared of being outside his comfort zone, to quite the opposite. Step by step he has increased his confidence through online gaming. Today, Sigge is one of the members of the unique para-esport team “ParaGhost”, and Martin is the manager. The team has 5 members – all living with DMD – a manager (Martin) and a coach. From being quite isolated, today Sigge has the courage to be very active and can easily present for hundreds of people! Gaming has been very beneficial to Sigge...2023-05-0530 min
The podcast series Take on DuchenneEpisode #9: DMD and an active lifestyle – to make the best out of your life with a change of mindsetIn this episode you will meet Tim Dalsgaard Pedersen, 28 years old from Denmark. He participated in the Danish Power Chair Hockey Team winning the World Championships in Switzerland 2022. Tim received the diagnosis of Duchenne muscular dystrophy at the age of five. Today, he is passionate about fitness and works as a personal coach. Tim believes that sports and a positive mindset are important for a good quality of life, to be aware and actively choose what is good for your mind and body.
SE-DMD-03222023-01-0428 min
Pharmacy Podcast NetworkTreatment of Duchenne Muscular Dystrophy: Updates in Disease-Modifying Drugs | PTCE Pharmacy ConnectEducational Objectives
Recall the pathophysiology and clinical manifestations of Duchenne muscular dystrophy (DMD), as well as the burden of DMD and its impact on patient quality of life
List the latest updates for the safety and efficacy data of new and approved disease-modifying therapies in the treatment of DMD
Faculty:
Amanda Hickman, PharmD, MPH, MSCS
Central Support Pharmacist – Neuro/Psych/Sleep
Trellis Rx
Atlanta, Georgia
Moderator:
Jessica L. Kerr, PharmD, CDCES
Associate Dean – Office Professional and Student Affairs
Prof...2022-12-2246 min
The Matt Scarfo PodcastDillon Doeden - Duchenne, Mount Everest, Connor's Fight, Immigration, and The Southern US Border | Matt Scarfo Podcast #6Dillon Doeden - Duchenne, Mount Everest, Connor's Fight, Immigration, and The Southern US Border.
Dillon Doeden is a Navy combat veteran, border patrol agent, friend, Father, and founder of Connor's Fight Against Duchenne Muscular Dystrophy. Dillon and I met just before flying to Nepal with Jim Raffone and The JAR of Hope to raise money for a Univ. of Florida clinical trial for DMD. During this conversation, we speak about Duchenne Muscular Dystrophy, Connor's Fight, border security, Mount Everest, and moving mountains for our families.
If you enjoy this episode, please subscribe on your preferred p...2022-11-211h 31
De RetailTrends Podcast#83 | Corine Duchenne, Managing Director Praxis | De RetailTrends PodcastCorine Duchenne (48) is bijna drie jaar managing director van Praxis. Deze doe-het-zelfketen heeft 191 vestigingen in ons land, waarvan 12 Praxis City-winkels. Na haar masterstudie Economie start Duchenne haar carrière bij fashionbrand Mexx. Eerst als controller bij de holding en vervolgens bij de Scandinavische werkmaatschappij. Als director planning & control van de holding zwaait Duchenne na tien jaar af. Ze vervolgt haar retailcarrière bij Maxeda DIY en de Nederlandse werkmaatschappij Praxis. Na diverse financiële directiefuncties wordt Duchenne HR-directeur van de holding. Met deze verbreding legt ze de basis voor haar huidige rol als ceo van Praxis.
Kijk voo...2022-11-0838 min
The Zandbergen ReportBart Zandbergen Talks with Cure Duchenne Founder Debra MillerHost Bart Zandbergen was joined in the studio virtually by Cure Duchenne Founder and CEO Debra Miller. If you have ever had the pleasure of meeting Debra, her husband Paul, or their son Hawken, you know how inspiring their journey has been. Debra’s son Hawken was diagnosed with Duchenne, which is a rare form of Muscular Dystrophy, at the age of 5. Today, he is 25, a USC graduate and a successful journalist. Debra founded Cure Duchenne about a year into Hawken’s diagnosis. Through the organization’s fundraising efforts, which have funded important research, the life expectancy for those with D...2022-10-2127 min
Patient PodcastPatients Podcast: Duchenne Muscular DystrophyOn today’s episode of Patient Podcasts, we are joined with co-founder and CEO of Duchenne UK, Emily Reuben. After her eldest son was diagnosed with Duchenne muscular dystrophy (DMD), she established the Duchenne Children’s Trust. The charity joined forces with Joining Jack and is now Duchenne UK. Since 2012 they have spent more than £17 million on accelerating the search for treatments and a cure for DMD, and have set up groundbreaking and award-winning collaborations, turning Duchenne UK into the UK’s largest funder of DMD research. Emily is a recognized advocate on behalf of DMD patients around the world in meet...2022-09-2017 min
The podcast series Take on DuchenneEpisode #8: Hope and love – Hulda from Iceland spreads awareness through social mediaIn this episode you will meet a fantastic woman from Iceland, Hulda Björk Svansdóttir. She is not only a mother of a son, living with Duchenne muscular dystrophy, but also an influencer advocating for DMD through “Friday Fun – Dancing for Duchenne”. She and her son Ægir are dancing with different people, organizations, and families from all over the world and posting it on social media every Friday to raise awareness about the disease. They even danced with the prime minister of Iceland! Listen to Hulda’s story about when she first understood her son is suffering from the disease and...2022-09-0722 minRare Care PodcastAn Interview With Jennifer Wallace Valdes, PT, Founder of the Duchenne Therapy NetworkLarry Luxner, senior correspondent for Rare Disease Advisor, interviews Jennifer Wallace Valdes, PT, founder of the Duchenne Therapy Network and physical therapist with CureDuchenne, on the importance of physical therapy and exercise in boys and young men with Duchenne muscular dystrophy.2022-08-3107 min
The Death and Betrayal Podcast - A Horus Heresy and Hobby PodcastS3 E13 - Don’t Fight a Black Bear - Horus HeresyIn this jam-packed episode, Alex and Craig go over some updates on LVO and The Push for Beta Garmon. We also chat about the lore for an upcoming event that has spun out of the global campaign - The Ghost Planet Polterax - before Kris stop by from the Varangian Heresy to talk about Wildlife and the Wild Life you could lead at Scandus while supporting the fight for Duchenne's and possibly winning some rad prizes! To donate, click the link in the shownotes or head over to our instagram and click the linktree!
The G...2022-08-301h 45The Death and Betrayal Podcast - A Horus Heresy and Hobby PodcastS3 E12 - Fulgrim’s Favourite PearIn this episode, Big John drops in and we gab about so much we can't even make show notes Just a non-stop ride. Don't forget to help out our friends at the Varangian Heresy beat Duchenne's in the link here: www.linktr.ee/thedabpodcast
Industrial Accidents we know - 1:39:25
Push for Beta Garmon Facebook Page:
https://www.facebook.com/groups/5362095480517766
Tale of Heresy Gamers:
http://lillegendstudio.com/blog/a-tale-of-heresy-gamers-part-1-gathering-the-warlords/
Lil Legend Studio:
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Matt...2022-08-261h 51The podcast series Take on DuchenneEpisode #7: DMD and transition from paediatric to adult careIn this episode, Dr. Saskia Houwen, paediatric rehabilitation physician from the Netherlands, talks about the challenges boys with Duchenne muscular dystrophy (DMD) may face as they become young adults. The transition from paediatric to adult care is one of them, when the boys typically assume responsibility for the coordination of their own care. Dr. Houwen talks about the need for flexibility in the transition phase and the importance to start this process early to help the boys build their independence. Her wish is for boys with DMD to dream big; but they must make known and seek support to address...2022-07-0423 min
Con Carol The PodcastUn día a la vez Ft. Claudia EspinalTener un hijo con una condición especial es sin dudas un camino lleno de retos y altibajos que no podemos controlar, lo que sí podemos hacer es aprender a manejar nuestra actitud frente a esto.
Hoy nos acompaña Claudia Espinal, quien nos compartirá su experiencia al recibir el diagnóstico de Duchenne para su hermoso Rodrigo. 2022-06-0136 min
Biotech 2050 Podcast87. Patient-centric Duchenne gene therapy, Joel Schneider, COO, Solid BiosciencesDr. Schneider is the Chief Operating Officer for Solid Biosciences, responsible for overseeing corporate and technical operations, quality, patient advocacy, communications, corporate strategy, and human resources.
As Solid’s first employee in 2014, Dr. Schneider was instrumental in discovering and executing proof-of-concept studies for SGT-001, as well as building the company’s unique disease-focused business model. In his role as Chief Operating Officer, Dr. Schneider oversees corporate and technical operations, quality, patient advocacy, communications, corporate strategy, and human resources. Dr. Schneider previously completed a postdoctoral fellowship at Harvard University in the Department of Stem Cell and Regenerative Biology, characterizing and developing smal...2022-01-2634 min
The Influencers PodcastDevelop an Adapter’s Mindset and Overcome Anything (58)This unbelievable story of perseverance will give you the tools to overcome anything. Elijah Stacy is 19 years old and suffers from Duchenne muscular dystrophy, a fatal muscle-wasting disease, but he has defied the odds and made progress never before seen in the medical field. Given less than ten years to live, Elijah reveals how he is living a life of extreme purpose and teaches us how to develop the mindset to overcome whatever obstacles we might be facing as well. For Show Notes & Episode Details: http://theinfluencerspodcast.org Get more inspirational content all wee...2021-11-1630 min
LIVE CHAT PodcastJoshua Kortleve and AdamantJosh is an intellectual with Duchenne Muscular dystrophy. Adam is a Aussie spoken word artist.2021-10-262h 14
Destroy Duchenne PodcastJohn Morrison talks about warrior mindsets he uses to deal with the challenges of Duchenne (Destroy Duchenne Podcast)John Morrison talks about warrior mindsets he uses to deal with the challenges of Duchenne Muscular Dystrophy with Elijah Stacy on The Destroy Duchenne Podcast. John Morrison is 18 years old and grew up in a military family that places on a strong emphasis on resilience.
ABOUT DESTROY DUCHENNE PODCAST: A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20...2021-09-1625 minRare Care PodcastDr. Eric Olson Discusses the Use of Gene Therapy in the Treatment of Duchenne Muscular Dystrophy Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Eric Olson, PhD, chief scientific advisor at Vertex Pharmaceuticals and founding chair of the molecular biology department at the University of Texas-Southwestern Medical Center. Dr. Olson is an expert on Duchenne muscular dystrophy and CRISPR gene editing technology.2021-09-0809 min
The podcast series Take on DuchenneEpisode #6: Duchenne Muscular Dystrophy – Pursuing Your Interest and Achieving Your GoalsIn this episode we meet three young, fantastic men who all 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 that entertainment should be for everyone. We go to Reykjavik in Iceland, where Guðjón Reykdal Óskarsson, a researcher in his own disease - Duchenne muscular dystrophy, talks about how he came to the conclusion that rare disease research is exactly what...2021-09-0232 min
Destroy Duchenne PodcastNathan talks about what it's like being a father to a child with Duchenne (Destroy Duchenne Podcast)ABOUT DESTROY DUCHENNE PODCAST: A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s. Hosted by 19 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy, who also suffers from Duchenne muscular dystrophy. The goal of the Destroy Duchenne podcast is very simple, yet ambitious: interview every person that has a relationship...2021-07-241h 15Destroy Duchenne PodcastTWINS talk about their unique experience living with Duchenne (Destroy Duchenne Podcast)Twins, Troy and Andrew, talk about their unique experience living with Duchenne muscular dystrophy. Learn about their positive mindset and attitude living with Duchenne!
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 19 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne...2021-06-1138 min
SickKids VSVS Duchenne: Editing DNA to Cure DiseaseFirst, Gavriel’s muscles got weaker. Then, he lost the ability to walk. From there, things will only get worse. The cause is Duchenne Muscular Dystrophy, a genetic disorder with no cure. But that might soon change. Using CRISPR, a state-of-the-art gene-editing tool, SickKids scientists were able to correct the disease-causing mutation in mice. The result? Improved muscle strength and function—and no signs of paralysis. Now, they’re refining their approach, so they can take this treatment out of the lab and into the world.For more information on this episode, visit sickkidsfoundation.com/podcast/duchenne. And to fund r...2021-04-2919 minDestroy Duchenne PodcastWhat it's like living with Duchenne muscular dystrophy with Jared PohleElijah Stacy and Jared Pohle talk about what it’s like living with Duchenne muscular dystrophy and their plans for their futures. Get to know Jared and his experience with Duchenne on this latest episode of the Destroy Duchenne Podcast.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by...2021-04-2831 minDestroy Duchenne PodcastElijah Stacy interviews Deniz Eskisan from the United Kingdom: discussion on having Duchenne.Elijah and Deniz discuss the hardships of living with Duchenne, their attitudes towards overcoming the adversity of Duchenne, and why we need to Complete The Cure™ for Duchenne.
ABOUT DESTROY DUCHENNE PODCAST: A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s. Hosted by 19 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, El...2021-03-261h 16Destroy Duchenne Podcast26 year old, Colin Werth, talks about living with Duchenne and how he's overcoming it.26 year old, Colin Werth, talks about living with Duchenne and how he's overcoming it.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 19 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy, who also suffers from Duchenne muscular dystrophy.
2021-03-1536 minThe podcast series Take on DuchenneEpisode #5: “Gaming is not a screen, it is a gate to the world”In this episode, Robert Steen from Norway is sharing some of the learnings he made with his son Mats, who lived with Duchenne muscular dystrophy. Mats mostly sat in his basement apartment behind rolled down curtains and played computer games until late at night. To the great sorrow of his parents, he isolated himself and did not want to go out to meet people. After Mats passed away at the age of 25, the parents found out that he had had a very rich social life in the gaming world. This was a wake-up call for them.
In this podcast, we...2021-01-2623 minDestroy Duchenne PodcastPaul An talks about living with purpose despite having Duchenne and other amazing life advice.26 year old from Southern California, Paul An, talks about all things relating to Duchenne, including advice on how to deal with the disease and what matters most in life. Paul An tells his story and shares a powerful message about living a positive life despite encountering great hardship.
ABOUT DESTROY DUCHENNE PODCAST: A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives...2020-11-2000 min
Changing the StoryDo Things That Suck: Changing the Story with Elijah Stacy, Destroy Duchenne Founder
What do you do when life hands you lemons? That’s what happened to our guest when he was diagnosed with Duchenne’s Disease as a child. Hear the story of Elijah Stacy, who shares his wisdom on how to overcome adversity and become a champion against life’s challenges.Our GuestElijah Stacy suffers from a genetic muscle wasting disease known as Duchenne Muscular Dystrophy, which took away his ability to walk at age 11. However, Elijah’s spirit remains unbridled as he is optimistic about the future and has a deep passion for business. This pas...2020-11-0222 min
Keeping Current CMECase Discussions in the Early Recognition of Duchenne Muscular Dystrophy (DMD)Clinical experts discuss the importance of early detection and diagnosis of patients with Duchenne muscular dystrophy (DMD). Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/939476?src=mkm_podcast_addon_9394762020-10-2732 minDestroy Duchenne PodcastZach Tebb talks about the hardships of Duchenne, what matters in life, and his future life plans.20 year old from California, Zach Tebb, talks about the hardships of Duchenne, what matters in life, and his future life plans. Zach gets raw about the reality of Duchenne and why we need to cure it.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 19 year old founder...2020-10-2600 min
Exeter LifeLocal Voices: World Duchenne Day with Lucas CurrierMonday, September 7th was World Duchenne Day, which seeks to raise global awareness for all those affected by Duchenne Muscular Dystrophy, an estimated 300,000 boys worldwide. Duchenne Muscular Dystrophy (DMD) is a genetic disease that destroys muscles. First, the legs go, then the upper body sags, and eventually the heart and lungs stop working. There is no cure. In 2016, the first medication to treat DMD was approved and while the medication was is not specific to all of the variations of DMD, families hope additional versions might be on the horizon. In this episode, Lara talks with 18-year-old Lucas Currier, o...2020-09-1008 minDestroy Duchenne Podcast15 year old Bradon Coy talks living with Duchenne, his business he founded and his positive philosophy on life.15 year old from Washington, Bradon Coy, talks about living with Duchenne, his business/entrepreneurship, his plans for his future, and his positive philosophy on life.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy...2020-08-281h 17Destroy Duchenne PodcastMax Jaques talks living with Duchenne, empathy for others, and his amazing philosophy for dealing with adversity.19 year old from Oregon, Max Jaques, talks about living with Duchenne, having empathy for others, living life with a positive attitude, and why we need to Destroy Duchenne!
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy...2020-08-2132 minDestroy Duchenne PodcastBrett Boettcher talks Power Soccer, hardships living with Duchenne, and more. (Destroy Duchenne Podcast)19 year old from Wisconsin, Brett Boettcher, explains his competitive spirit playing Power Soccer, the adversity he faces everyday battling Duchenne and his positive outlook on life.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah...2020-08-1446 minDestroy Duchenne PodcastJordan Reidenberg gets raw about what it's like having Duchenne (Destroy Duchenne Podcast)18 year old from Pennsylvania, Jordan Reidenberg, opens up and exposes the horrors of having Duchenne. However, Jordan shares his amazing outlook and positive attitude towards life.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah...2020-07-181h 00Destroy Duchenne PodcastArtist with Duchenne, Ryan Gomez, talks about how he’s using his art to Destroy Duchenne (Destroy Duchenne Podcast)Ryan Gomez talks about his story of living with Duchenne and how he’s using his art to change the world by Destroying Duchenne.
ABOUT DESTROY DUCHENNE PODCAST:
A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy, who al...2020-07-1634 min
Destroy Duchenne Podcast12 year old little brother, Kai Stacy, talks about having Duchenne (Destroy Duchenne Podcast)Elijah Stacy interviews his little 12 year old brother, Kai Stacy, about having Duchenne and how it has impacted both of their lives.
ABOUT DESTROY DUCHENNE PODCAST: A podcast telling the stories of those affected by a fatal muscle wasting disease, Duchenne muscular dystrophy (DMD), that robs children of their ability to walk by the age of 11, the ability to raise their arms by their teenage years, and eventually their lives in their early 20s.
Hosted by 18 year old founder and CEO of the 501 (c)3 nonprofit organization Destroy Duchenne, Elijah Stacy, who also suffers from Duchenne...2020-07-1518 min
Vital Health PodcastDimitrios Athanasiou, a Duchenne Patient Advocate in the COVID-19 EraWorking at the sharp edge of finance by restructuring companies, Dimitrios Athanasiou was a very successful business consultant and executive with more than 25 years’ experience on international projects. Then, his life changed when his son was diagnosed with Duchenne Muscular Dystrophy. He has since put his business career aside, becoming a fulltime international patient advocate in Duchenne and in rare diseases. In this podcast we discuss the impact of COVID-19 on both the access to regular care for patients dealing with a rare disease, and the state of the development of needed new orphan and medicinal products given th...2020-05-1230 minThe podcast series Take on DuchenneEpisode #4: DMD and an international perspective, part 2In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier. You´ll also meet Professor Már Tulinius from Sweden.
This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on...2019-11-2723 minThe podcast series Take on DuchenneEpisode #3: DMD and an international perspective, part 1In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier.
This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the...2019-11-2727 minThe podcast series Take on DuchenneEpisode #2: DMD and genetic testingIn this episode, Malin Kvarnung, MD and PhD, from Sweden, talks about genetic diagnosis and genetic testing. You´ll also meet Professor Már Tulinius from Sweden.
This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.2019-11-2722 minThe podcast series Take on DuchenneEpisode #1: DMD and the importance of early diagnosisIn this episode, Professor Thomas Sejersen from Sweden talks about the symptoms and early diagnosis.
This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.
In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.2019-11-2721 min
Caring ConversationsMeet NCC19 Presenters: Mark Servais and Margaret FitzpatrickAs the youngest of her parents’ 16 children, and the only one who went into the healthcare profession, Margaret Fitzpatrick was the natural choice to be a caregiver to both of her parents as they aged into their 90’s.
Additionally, Margaret is the healthcare POA for several of her siblings who are dealing with health challenges (end-stage Multiple Sclerosis, complications from alcoholism and heart disease).
Margaret has been a critical care nurse for over a decade and a nurse anesthetist with her Master’s degree in anesthesia for ten years. She is a leader in the movement to help patients and famili...2019-10-2829 min
Decoding Duchenne11. Duchenne UK Family FundsWe know that the people who are most passionate about raising money to find treatments and a cure for Duchenne Muscular Dystrophy are those who live with it every day.
That's why we at Duchenne UK want to help and support you - the friends and families of those living with DMD - with raising the money to accelerate treatments and to find a cure.
When you set up a family fund, we ring-fence the money you raise for your fund and then let you decide which research projects you want to support. Every pound you raise will be invested...2019-09-1209 min
Decoding Duchenne10. Repurposing Drugs for DMDRepurposing is an exciting approach to drug development; it involves looking at existing medicines, and testing them to see if they could be effective in treating Duchenne Muscular Dystrophy.
Our host Clare Runacres speaks to Emily Crossley, Duchenne UK Co-founder, and Professor Dirk Fischer, from UKBB, the University Children’s Hospital in Basel, Switzerland about the work we are doing on repurposing medicines.
If you have any questions or would like to get in touch please email support@duchenneuk.org or visit www.duchenneuk.org2019-09-0212 min
Decoding Duchenne8. The DMD Hub - Alex Johnson, Emily Crossley, Prof Volker Straub and Emma HelsopOur host Clare Runacres speaks about the DMD Hub with Prof Volker Straub - Professor of Medicine and Professor of Neuromuscular Genetics at Newcastle University, Emma Heslop - DMD Hub manager and Duchenne UK's co-founders Alex Johnson and Emily Crossley.
Visit dmdhug.org
If you have any questions please email support@duchenneuk.org2019-07-0812 min
Decoding Duchenne7. What Is Duchenne - Dr David BullOur host Clare Runacres speaks with Duchenne UK's Director of Research, Dr David Bull, about Duchenne muscular dystrophy.
If you have any questions please email support@duchenneuk.org.2019-06-2426 min
Decoding Duchenne6. SPECIAL EPISODE - Testosterone as a treatment for DMD with Prof Volker StraubIn this podcast we speak with Prof Volker Straub about Testosterone, which is sometimes given to patients with Duchenne Muscular Dystrophy (DMD) who take steroids.
Steroids are part of the recognised standard of care in treating Duchenne Muscular Dystrophy (DMD). But long-term use of steroids causes a number of side effects including delayed puberty. Testosterone is sometimes given to make boys begin going through puberty.
There is a clinical trial running at the John Walton Muscular Dystrophy Research Centre (JWMDRC), led by Prof Volker Straub and Dr Claire Wood, treating 15 adolescents with DMD with testosterone to induce puberty. As well...2019-04-0112 min
Decoding Duchenne5. Decoding Duchenne - Clinical trials with Dr David BullIn this episode Dr David Bull gives a breakdown about how clinical trials work. This was recorded at our Patient Information Day in September 2018. We host free patient information days twice a year. Please join us at our next information day on Saturday 16th March 2019 at Guy’s Hospital in London.2019-01-0717 min
Decoding Duchenne4. Decoding Duchenne - Advice From ParentsIn this weeks episode of Duchenne UK's DECODING DUCHENNE podcast series, our host Clare Runacres interviews Lisa Kuhwald and Alex Johnson, whose son's both have Duchenne, about the time of diagnosis. Alex Johnson is one of the co-founders of Duchenne UK. Earlier this year, Lisa joined Duchenne UK in a voluntary role as Patient Advocacy Officer.2018-12-2125 min
Decoding Duchenne3. Decoding Duchenne - Project HerculesIn this weeks episode of Duchenne UK's DECODING DUCHENNE podcast series, our host Clare Runacres speaks to Emily Crossley, Fleur Chandler and Josie Godfrey about Project HERCULES.
Project HERCULES is a collaborative global project set up by Duchenne UK to increase the chances of patients with Duchenne Muscular Dystrophy (DMD) of accessing innovative treatments. It brings together pharmaceutical companies to develop and build a better evidence base to help support their case for the pricing and reimbursement of new treatments for DMD2018-12-1524 min
Decoding Duchenne2. Decoding Duchenne - An interview with Andy FarrellThis is a special episode featuring Andy Farrell OBE, recorded at Duchenne UK's rugby dinner in September. Andy talks with our host Clare Runacres about his involvement with the charity.2018-12-0808 min
Decoding Duchenne1. Decoding Duchenne - An Introduction To Duchenne UKIn the first of our podcast series, our host Clare Runacres talks to Emily Crossley and Alex Johnson about why they co-founded the charity - Duchenne UK. They discuss their sons DMD diagnosis and the work the charity is doing to find treatments for Duchenne muscular dystrophy.
Duchenne UK is a highly focused, ambitious and lean charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne Muscular Dystrophy.
Duchenne Muscular Dystrophy (DMD) is a devastating muscle wasting disease and is the most common genetic killer of children worldwide. There is no treatment or cure.
Children...2018-11-2616 min
Patient Stories with Grey GeneticsFighting for Sons with DuchenneAs a new mother and young college student, Jennifer McNary noticed that her first son, Austin, wasn’t meeting his developmental milestones, but it wasn’t until he was 3 years old that Austin was diagnosed with Duchenne Muscular Dystrophy. The same diagnosis would follow for his younger brother, Max. Today, Jenn is the mother of four children as well as an advocate, public speaker and consultant in the rare disease space.
Story Reference Points:
What is Duchenne Muscular Dystrophy? @ 1:05
Austin’s diagnosis with Duchenne @ 3:10
Raising sons with Duchenne @ 7:32
Spotlight on Duchenne advocacy organizations @ 13:57
Jenn’s...2018-08-2838 min
Patient Stories with Grey GeneticsFighting for Sons with DuchenneAs a new mother and young college student, Jennifer McNary noticed that her first son, Austin, wasn’t meeting his developmental milestones, but it wasn’t until he was 3 years old that Austin was diagnosed with Duchenne Muscular Dystrophy. The same diagnosis would follow for his younger brother, Max. Today, Jenn is the mother of four children as well as an advocate, public speaker and consultant in the rare disease space.
Story Reference Points:
What is Duchenne Muscular Dystrophy? @ 1:05
Austin’s diagnosis with Duchenne @ 3:10
Raising sons with Duchenne @ 7:32
Spotlight on Duchenne advocacy organizations @ 13:57
Jenn’s...2018-08-2838 minThe Stem Cell PodcastEp. 110 “Blood Stem Cell Lineage” Featuring Dr. Fernando CamargoGuest
Dr. Fernando Camargo is a Principal Investigator at Boston Children's Hospital and Professor in the Department of Stem Cell and Regenerative Biology at Harvard University. Dr. Camargo’s laboratory’s ultimate goal is to understand the signals that regulate adult stem cell maturation and tissue regeneration and has a strong interest in studying the cellular and molecular biology of hematopoietic stem cells.
Featured Resource: Human Hematopoietic Stem and Progenitor Cell Phenotyping Wallchart
Resources and Links
A New Blood Test to Predict Alzheimer’s Disease - Accumulations of a sticky protein called amyloid-β can appear in the brain decades before a perso...2018-02-131h 16The Stem Cell PodcastEp. 108: “Skeletal Muscle” Featuring Dr. April PyleGuest
Dr. April Pyle is an Associate Professor in the Department of Microbiology, Immunology and Molecular Genetics at the University of California, Los Angeles (UCLA). She is also a member of the Eli and Edythe Broad Stem Cell Center, the Center for Duchenne Muscular Dystrophy and the Jonsson Comprehensive Cancer Center at UCLA. Dr. Pyle's lab uses multi-disciplinary approaches to study human pluripotent stem cell biology and differentiation of these cells for use in regenerative medicine.
Featured Resource: MyoCult™ Media to Expand, Maintain and Differentiate Skeletal Muscle Progenitor Cells (Myoblasts)
Resources and Links
Learning How to Tolerate the Cold from Sq...2018-01-121h 07
Varangian Heresy PodcastPost Scorpious Wrap Up or "How I learnt to infiltrate a Glaive"On tonight's episode we talk all about The Scorpious Insurrection with Fredrik and Bjorn who took part
We also talk about all the stuff that has happened in the past 2 weeks, the new stuff that is out and about and talk about the upcoming awesomeness that is SCANDUS!!!
Intro
Social media/shout-outs
Facebook: The Varangian Heresy Podcast (The Varangian Heresy Podcast Group)
Twitter: Varangian Heresy
Email: thevarangianheresy@gmail.com
website: Migrating
Instagram: VarangianHeresy
Greetings, banter
Duchenne Update 90%
Scandus Ticket info
Knight Raffle update - shout out to Thomas Poardoe and Alan Gaulton for all the help they have given
Golloch...2017-08-213h 15
Stuff Your Doctor Should Know038 - JAR of Hope the story of a young heroJoin Catalina Martone and James Raffone as he shares with us his painful and passionate journey of his sons struggle of the incurable disease Duchenne Muscular Dystrophy. And learn of the surprising similarities of the health struggles we all share with his son.Support this show http://supporter.acast.com/stuff-your-doctor-should-know. Hosted on Acast. See acast.com/privacy for more information. Get full access to Stuff Your Doctor Should Know at healthygutgirl.substack.com/subscribe2017-03-2534 minThe Stem Cell PodcastEp. 82: “Year in Review” Featuring Dr. Daylon JamesGuest:
For the interview portion of the show, we talk to our very own Dr. Daylon James. In addition to hosting the Stem Cell Podcast, Daylon is an Assistant Professor at Weill Cornell Medical College in New York City where he uses stem cells as a tool to investigate cardiovascular and reproductive disorders.
Resources and Links
World Health Organisation Declares a Public Emergency of International Concern Over Zika – World Health Organization declared the Zika virus and its suspected link to birth defects an international public health emergency, a rare move that signals the seriousness of the outbreak and gives countries ne...2017-01-031h 18
Varangian Heresy PodcastEpisode 7 - Terrain!!! Episode 1: Scrounging and designWith Freddie away at his summer housewe have a guest host in - Mr Lex Head!
We talk about UK Heresy, the Crusade and Heresy facebook group and our main segment is all about scrounging terrain parts.
INTRO - BODIES - Drowning Pool
OPEN -
Greetings, banter, guest host introduction - Lex Head
Time for Host hobby progress/project/updates
News from the Forge, Workshop and Library
- New legion Dice
- Legion transfer sheets
- White dwarf back to monthly - does anyone in 30k care?
Host Concept List – There is a reason you have no friends (again), Chris
Mu...2016-06-223h 26
Varangian Heresy PodcastEpisode 6 - Plastic Fantastic!We talk about plastic in the 31st Millennium with our guest and old friend of Freddie's, Fredrik Olausson
INTRO - BODIES - Drowning Pool
OPEN -
Greetings, banter, guest introduction - Fredrik Olausson
We've passed 119 likes on Facebook, thank you to all our listeners
Time for Host hobby progress/project/updates
News from the Forge, Workshop and Library
-Terminator Praetor with Poking Stick (weekend limited)
-Diabolist Librarian who do resemble the Ogre Firebelly
Host Concept List – There is a reason you have no friends, Chris
Musical Break - BARBIE GIRL - Aqua (Fredrik's Choice)
Plastic Fantastic talk with guest.
We ta...2016-06-134h 07The Stem Cell PodcastEp. 58: “Heart Disease Modeling” Featuring Dr. Lior GepsteinGuest:
Clinician and researcher Dr. Lior Gepstein discusses his work on using stem cells to model heart disease. We talk to Dr. Gepstein about his past and current work, including his latest paper published in Stem Cell Reports. His research covers human-induced pluripotent stem cell-cardiomyocytes and calcium levels.
Resources and Links
Antibiotic Resistance: World on Cusp of 'Post-Antibiotic Era – The world is on the cusp of a "post-antibiotic era", scientists have warned after finding bacteria resistant to drugs used when all other treatments have failed.
MG, the Newest STD on the Block, Found in over 1% of the Population – This article repor...2015-11-241h 07