Ep 48. One Shot at a New Life with Gene Therapy Patient Brian O'Mahoney

Ep. 51 When Patients Help Design Research, Healthcare Improves

When Patients Help Design Research, Outcomes Improve. No lab coat required. Just lived experience and a seat at the table. Anne Simard shares how patient partners have rewritten study protocols, redesigned unusable wearables, and told engineers their "sexy" new tech was a disaster. She also tackles the awkward question: should patients get paid for their expertise? Because when patients help design research, outcomes improve for everyone. Watch the full episode and follow us on our socials! Facebook - https://tinyurl.com/CanadianSADSFacebook [https://tinyurl.com/CanadianSADSFacebook] YouTube - https://tinyurl.com/CanadianSADSYouTube [https://tinyurl.com/CanadianSADSYouTube] Instagram - https://tinyurl.com/CanadianSADSInstagram [https://tinyurl.com/CanadianSADSInstagram] Spotify - https://tinyurl.com/CanadianSADSSpotify [https://tinyurl.com/CanadianSADSSpotify] Apple - https://tinyurl.com/CanadianSADSApple [https://tinyurl.com/CanadianSADSApple] Amazon - https://tinyurl.com/CanadianSADSAmazon [https://tinyurl.com/CanadianSADSAmazon] #LetsTalkSADSLive #SADS #PatientPartners #PatientEngagement #ClinicalResearch #LivedExperience #PatientVoice #NothingAboutUsWithoutUs #FutureOfHealthcare

Ep. 50 A Conversation Between Two Sisters About ARVC

We have a very special episode this week of Let's Talk SADS Live. Our host Heather is talking with someone she's known her whole life: her older sister, Meredith. They share a lot. Memories, jokes, the occasional family fight. And now an inherited heart condition called ARVC. Meredith watched Heather get her diagnosis first. Years went by, then she got the same news herself. So they sat down to talk about what that's actually like. The hard conversations with family, the things people get wrong, and what it means to go through something like this with your sister in your corner. Just two sisters, one conversation, no script. Watch the full episode and follow us on our socials! Facebook - https://tinyurl.com/CanadianSADSFacebook YouTube - https://tinyurl.com/CanadianSADSYouTube Instagram - https://tinyurl.com/CanadianSADSInstagram Spotify - https://tinyurl.com/CanadianSADSSpotify Apple - https://tinyurl.com/CanadianSADSApple Amazon - https://tinyurl.com/CanadianSADSAmazon #LetsTalkSADSLive #SADS #ARVC #GeneticHeartCondition #FamilyHistory #Sisters #GeneticTesting #WomensHeartHealth #Cardiology #FamilyMatters #DutyToInform #HeartCondition #RareDisease #InheritedCondition #HeartHealth #Sisterhood #Resilience #PatientAdvocacy #KnowYourFamilyHistory #SuddenCardiacArrest #ICD #Defibrillator #AthleteHeart #RealConversations

Ep. 49 How a Teenager Turned Her CHD Into Her Superpower

You wouldn't expect a 16 year old with Congenital Heart Defect (CHD) to say a roller coaster is one of her favorite stories, but here we are! Amelia was born with Double Outlet Right Ventricle and has had three open heart surgeries, but ask her if she'd trade her CHD for a "normal" life, and her answer might surprise you. In this uplifting conversation, Amelia opens up about finding her people at Campfire Circle, advocating for other cardiology patients through the Chameleon app, and why she actually sees her heart condition as something that made her life better, not worse. Amelia's story is proof that resilience looks a lot like joy. Watch the full episode and follow us on our socials! Facebook - https://tinyurl.com/CanadianSADSFacebook YouTube - https://tinyurl.com/CanadianSADSYouTube Instagram - https://tinyurl.com/CanadianSADSInstagram Spotify - https://tinyurl.com/CanadianSADSSpotify Apple - https://tinyurl.com/CanadianSADSApple Amazon - https://tinyurl.com/CanadianSADSAmazon #LetsTalkSADSLive #SADS #CHD #CongenitalHeartDefect #DoubleOutletRightVentricle #Fontan #HeartWarrior #CampfireCircle #PatientPartner #YouthAdvocacy #RareDisease #HeartCondition #TeenWithCHD #Cardiology #TransitionToAdultCare #SelfAdvocacy #LivingWithCHD #HeartPalpitations #RollerCoaster #AmazingPeople

Ep 48. One Shot at a New Life with Gene Therapy Patient Brian O'Mahoney

Gene therapy. One injection. No going back. Brian O'Mahoney, the first person in Ireland to receive any gene therapy, has lived with severe hemophilia B his entire life. In this deeply personal conversation, Brian shares what it really means to make an irreversible medical decision, and how basing his choice on data from just three patients became the leap of faith that changed everything. Now, 44 years into leading patient advocacy across Ireland, Europe, and globally, Brian is helping others navigate the same impossible question: When do you take the one shot you'll ever get? This episode offers a rare look inside the mind of someone who chose to rewrite their own biology, and the resilience required to help an entire community do the same. Watch the full episode and follow us on our socials! Facebook - https://tinyurl.com/CanadianSADSFacebook YouTube - https://tinyurl.com/CanadianSADSYouTube Instagram - https://tinyurl.com/CanadianSADSInstagram Spotify - https://tinyurl.com/CanadianSADSSpotify Apple - https://tinyurl.com/CanadianSADSApple Amazon - https://tinyurl.com/CanadianSADSAmazon #LetsTalkSADSLive #SADS #GeneTherapy #Hemophilia #HemophiliaB #PatientAdvocacy #RareDisease #GeneticCondition #MedicalInnovation #PatientStory #ChronicIllness #LivingWithHemophilia #BleedingDisorders #GeneTherapyTrial #IrreversibleDecision #SharedDecisionMaking #PatientEmpowerment #MedicalBreakthrough #ClinicalTrial #HealthcareInnovation #PatientAdvocate #RareDiseaseCommunity #Resilience #MedicalDecisions

Ep. 47 A New Era of Remote Heart Monitoring and What It Means for Patients with Dr. Heather Ross

Wearable technology that can predict heart failure hospitalizations days in advance is just one of the groundbreaking innovations Dr. Heather Ross, a world-renowned cardiologist and heart failure specialist, is bringing to patients. In this powerful conversation, Dr. Ross shares how a near-death experience on a remote Antarctic mountain transformed her approach to care, the revolutionary digital tools that are changing how we monitor heart health, and her mission to bring equitable heart care to rural and Indigenous communities across Canada, all from a Pelican case.This episode offers a rare glimpse into the mind of a physician who has dedicated her life to meeting patients where they are, both physically and emotionally, and the digital tools making that possible. Watch the full episode and follow us on our socials! Facebook - https://tinyurl.com/CanadianSADSFacebook YouTube - https://tinyurl.com/CanadianSADSYouTube Instagram - https://tinyurl.com/CanadianSADSInstagram Spotify - https://tinyurl.com/CanadianSADSSpotify Apple - https://tinyurl.com/CanadianSADSApple Amazon - https://tinyurl.com/CanadianSADSAmazon #LetsTalkSADSLive #SADSCanada #HeartFailure #WearableTech #RemoteMonitoring #DigitalHealth #HealthEquity #Cardiology #HeartHealth #PatientCare #HeartDisease #HeartHealthMatters #Cardiologist #HeartFailureAwareness #MedTech #HealthTech #AIinHealthcare #Wearables #PreventiveCare #RuralHealth #IndigenousHealth #DigitalTransformation #TrueHF #AppleWatch #HeartMonitoring #CardiacCare #HealthcareInnovation #PatientEmpowerment #HeartBrainConnection #NearDeathExperience #TestYourLimits