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!

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#LetsTalkSADSLive #SADS #CHD #CongenitalHeartDefect #DoubleOutletRightVentricle #Fontan #HeartWarrior #CampfireCircle #PatientPartner #YouthAdvocacy #RareDisease #HeartCondition #TeenWithCHD #Cardiology #TransitionToAdultCare #SelfAdvocacy #LivingWithCHD #HeartPalpitations #RollerCoaster #AmazingPeople

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.

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#LetsTalkSADSLive #SADS #GeneTherapy #Hemophilia #HemophiliaB #PatientAdvocacy #RareDisease #GeneticCondition #MedicalInnovation #PatientStory #ChronicIllness #LivingWithHemophilia #BleedingDisorders #GeneTherapyTrial #IrreversibleDecision #SharedDecisionMaking #PatientEmpowerment #MedicalBreakthrough #ClinicalTrial #HealthcareInnovation #PatientAdvocate #RareDiseaseCommunity #Resilience #MedicalDecisions

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!

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#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

Your story matters. And telling it might just help you heal.After surviving sudden cardiac arrest and a heart failure diagnosis herself, Dr. Sharon Bray discovered that writing wasn't just a creative outlet. It was a lifeline.In this week's Let's Talk SADS Live, Dr. Bray shares how expressive writing can help process trauma, build community, and remind us that we are not alone. Whether you write for five minutes or fifty years, putting words to your experience can change everything.Hear her full story. Links below.YouTube - ⁠https://tinyurl.com/CanadianSADSYouTube⁠Spotify - ⁠https://tinyurl.com/CanadianSADSSpotify⁠Apple - ⁠https://tinyurl.com/CanadianSADSApple⁠Amazon - ⁠https://tinyurl.com/CanadianSADSAmazon⁠#ExpressiveWriting #TherapeuticWriting #HealingThroughWriting #WriteYourStory #StorytellingHeals #CreativeWriting #MentalHealthMatters #TraumaHealing #EmotionalWellness #CopingWithIllness #GriefAndLoss #HealingJourney #YouAreNotAlone #PatientSupport #HeartHealth #HeartFailure #SuddenCardiacArrest #SADS #SADSAwareness #CardiacArrest #LivingWithHeartFailure #HeartDiseaseAwareness #PatientAdvocacy

What if a single treatment could change the future of your heart?

This #HeartMonth, we are bringing you a conversation filled with hope, science, and the power of persistence.

We sit down with Dr. Sheikh, a Canadian-born scientist, who walks us through her groundbreaking gene therapy research targeting ARVC PKP2 mutations, what "potential reversibility" could mean for patients living with heart failure, and why she is now working toward mutation agnostic treatments that could help even more families.

If you have ever wondered how close we really are to treatments that address the root cause of genetic heart disease, this episode is for you.

Listen now to learn how science, determination, and a personal connection are driving real progress:

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#SADS #HeartMonth #ARVC #GeneTherapy #GeneticHeartCondition #PKP2 #CardiacResearch #SuddenCardiacArrest #SCAPrevention #HeartHealth #MedicalBreakthrough #PatientHope #CanadianResearch #WomenInScience

This #HeartMonth, we are honoured to share a deeply moving conversation with a very special friend of The Canadian SADS Foundation, Walker Frahm, CEO of The US SADS (Sudden Arrhythmia Death Syndromes) Foundation .

Walker opens up with raw honesty about the sudden loss of his daughter, Lavinia, and how this tragedy reshaped his life’s path. He speaks to the unique experience of a father’s grief: the instinct to hold everything together, the delayed wave of emotion, and the choice to lean in and lead.

This episode is a powerful exploration of finding purpose in pain, the critical need for specific community after loss, and how a father’s love fuels the relentless work to protect other families.

Walker’s story is a testament to turning heartbreak into hope and action.

To hear his full story of love, loss, and leadership, listen now on all platforms:

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⁠#SADS #HeartMonth #GeneticHeartCondition #SuddenCardiacArrest #SCAPrevention #Grief #Fatherhood #PatientAdvocacy #HeartHealth #MentalHealth #TurningPainIntoPurpose

From unexpected heart failure at 23 to founding a national patient community.

Today we are speaking with Marc Bains, co-founder of HeartLife Foundation. He shares his powerful journey from diagnosis to transplant and into advocacy. This episode explores how community, research, and patient partnership can transform life after a devastating cardiac diagnosis and why building support is critical for anyone living with heart disease.

To hear the full story of resilience and how Heart Life was born, listen now on all platforms:

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#SADS #HeartFailure #Cardiomyopathy #HeartTransplant #GeneticHeartCondition #Cardiology #InheritedArrhythmia #PatientAdvocacy #HeartHealth #HeartLife #SurvivorStory #LivingWithHeartDisease #PatientPartner #HeartResearch #CanadianHealth

What if we rebranded exercise with a SADS condition as play?

Join us as health coach Janet Omstead shares her joyful approach to building a sustainable movement and exercise routine. This episode dives into practical strategies to overcome fear, find motivation, and rediscover the pleasure of moving within your limits.

To build a complete and safe foundation, we recommend listening to part 1 of this 2 part exercise series featuring pediatric cardiologist Dr. Robert Hamilton.

Listen to this episode now:
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#SADS #BrugadaSyndrome #CPVT #LongQT #ARVC #HypertrophicCardiomyopathy #Cardiology #InheritedArrhythmia #ExerciseWithHeart #HeartHealth #HealthCoach #BehaviorChange #Play #JoyfulMovement #LivingWithSADS