Let's Talk SADS Live

When Carmine was told he had hypertrophic cardiomyopathy, he thought he'd never see his kids grow up. Sixteen years later, he's living his best life.

He spent years living in fear, isolating himself, and convinced his heart condition would eventually take everything from him. But after 16 years of struggling, a new medical treatment changed everything. Now he's climbing staircases in Italy, traveling the world with his wife, and feeling better than he has in decades.

In this inspiring conversation, Carmine opens up about the emotional toll of living with HCM, the importance of speaking up and asking for help, and why he believes there's hope for everyone living with this condition.

His story is proof that a diagnosis doesn't have to be the end of your story. Sometimes, it's just the beginning.

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 #HCM #HypertrophicCardiomyopathy #HeartHealth #Cardiomyopathy #HeartWarrior #CardiacCare #Hope #MedicalTreatment #HeartCondition #LivingWithHCM #Cardiology #PatientStory #HeartDisease #Gratitude #SecondChance #AmazingPeople

Somewhere right now, a young woman is being told her heart palpitations are just anxiety. She is being sent home without an ECG. She is being told she is too young and too low risk for anything to be wrong.

She might believe them. She also might go years without knowing she has an inherited heart condition.

Dr. Danna Spears, an electrophysiologist at the Peter Munk Cardiac Centre, sees these women every day. In this episode, she talks about the fear of never growing old, the worry about having children, the struggle of living with a visible defibrillator and the confusion around menopause and hormone therapy.

But mostly she talks about hope. Because the answers are better than most women have been told. And because no one has to do this alone.

This episode is for every woman who has ever been told to stop worrying. Your heart matters. And so do you.

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 #WomensHeartHealth #InheritedHeartConditions #Cardiomyopathy #Channelopathy #ARVC #LongQT #ICD #Defibrillator #HeartDiseaseInWomen #NotJustAnxiety #WomensHealth #PatientVoice #HeartCommunity #YouAreNotAlone #PregnancyAndHeartDisease #MenopauseAndHeartHealth

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
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 #PatientPartners #PatientEngagement #ClinicalResearch #LivedExperience #PatientVoice #NothingAboutUsWithoutUs #FutureOfHealthcare

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

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

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

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

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:

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

#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:

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

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