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 I...

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...

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...

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 do...

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 find...

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...

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 t...

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. Wheth...

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 wit...

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: th...

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...

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 th...

What if your diagnosis didn't mean you had to give up the sports and activities you love?   Pediatric cardiologist Dr. Robert Hamilton challenges decades of fear with a new, empowering message for the SADS community:  "Complete restriction is just not healthy." Drawing from the latest patient data and his extensive clinical practice, Dr. Hamilton explains how exercise recommendations...

What if the greatest gift for your family wasn't something you could wrap? Yvonne Heath, author of "Live Your Life to Death", explains why preparing for the end of life is an essential act of love. She shares powerful stories from the bedside, revealing the profound peace that comes with planning and the heartbreaking conflict that arises without it. This conversation is a powerful call to normali...

Having your life's dream taken away in an instant is a reality Brett MacLean faced at 23. A professional hockey player who had just scored in the NHL, Brett's career ended with a sudden cardiac arrest on the ice. In this powerful conversation, he shares his story of survival, from waking up with no memory of his hockey career to grappling with the profound loss of his identity. This conver...

For Lia Olmsted, the discovery that her children had Brugada Syndrome came after the devastating loss of her 21-month-old daughter, Reese. In this heartfelt conversation, Lia shares the realities of parenting a child with a life-altering condition, the critical importance of CPR awareness, and how she channels her love for Reese into a foundation that supports and brings smiles to children in her...

Meet Hannah Keime from HeartCharged. Diagnosed with a genetic heart condition at just 14, Hannah gets real about the challenges of an invisible illness and explains why she started HeartCharged. She opens up about showing her scars and sharing the raw, unfiltered truth of her patient journey to build a supportive global community for young people. Her story is a powerful blend of vulnerability, re...

The Road to Recovery after a Cardiac Storm In this powerful first episode of the new patient-driven Let’s Talk SADS Live , Sally Gilbert shares her journey of living with exercise-induced ARVC and the emotional aftermath of surviving multiple ICD shocks during a cardiac event earlier this year. Sally opens up about the fear and uncertainty that followed, and how she’s learned to cope, rebuild her...

Join the Canadian SADS Foundation for the 35th episode of Let’s Talk SADS Live with Dr. Andrew Krahn, as we take a closer look at Long QT Syndrome and what it means for patients and families. This episode will explore the latest understanding of Long QT Syndrome, from diagnosis and risk assessment to management and family screening. Dr. Krahn will share insights from his clinical and research expe...

Join us for our first pre-recorded episode! In episode 34 of Let’s Talk SADS Live, we sit down with Dr. Andrew Landstrom to explore the promise and progress of gene therapy for inherited arrhythmia syndromes. This episode dives into how gene therapies are being developed to treat conditions such as Long QT Syndrome, CPVT, and Brugada Syndrome, and what this means for families affected by SADS. Fro...

Join the Canadian SADS Foundation for the 33rd episode of Let’s Talk SADS Live, where we’ll be joined by Dr. Danna Spears to explore Managing Pregnancy with a SADS Condition. This episode will focus on the unique challenges and important considerations for individuals with inherited arrhythmia syndromes as they plan for and go through pregnancy. From risk assessment to delivery planning, we’ll tak...

Join the Canadian SADS Foundation for the 32nd episode of Let’s Talk SADS Live, where we’ll be joined by Dr. Lauren Schneider to explore the Impact of SADS Conditions on Mental Health and Wellbeing. This episode will highlight how anxiety, trauma, and uncertainty can affect overall wellbeing, and why integrating mental health support into cardiac care is so critical. Dr. Lauren Mikula Schneider is...

Join the Canadian SADS Foundation Live for the 31st episode of Let’s Talk SADS Live, hosted by Dr. Shubhayan Sanatani. In this episode, we’ll be speaking with Dr. Dominic Abrams about Arrhythmogenic Right Ventricular Cardiomyopathy, exploring how genetics, exercise, and evolving diagnostic strategies play a role in identifying and managing this complex inherited heart condition. Dr. Dominic Abrams...

In this episode, we will be speaking with Dr. Victoria Claydon on the Autonomic Nervous System and fainting spells (or syncopal episodes) and whether, in rare cases, it can contribute to irregular heart beats associated with a phenomenon known as “autonomic conflict”.Dr. Victoria Claydon is a professor in the Department of Biomedical Physiology and Kinesiology at Simon Fraser University (SFU). She...

Join us for the 29th episode of Let's Talk SADS Live, hosted by Dr. Shubhayan Sanatani. In this episode, we will be speaking with Dr. Robert Avram on the uses of AI in healthcare, and how this will affect the future of SADS conditions. Dr. Avram has completed an AI fellowship at UCSF and an Interventional Cardiology fellowship in Ottawa. He is currently a clinician and researcher at the Montre...