FIA - Foundation for Inherited Arrhythmias

FIA - Foundation for Inherited Arrhythmias The SADS Foundation is now FIA (Foundation for Inherited Arrhythmias) 💕🧬 Our vision: Life – unlimited by inherited arrhythmias.

September is Inherited Arrhythmia Awareness Month, and we're starting it off strong by bringing you the people who know ...
08/25/2026

September is Inherited Arrhythmia Awareness Month, and we're starting it off strong by bringing you the people who know these conditions best. ❤️🧬

Register for free at https://www.fiacardiac.org/resources/webinars.

All month, leading specialists are joining us to walk through one condition at a time: the basics, the latest science, and your questions answered live. Whether you're newly diagnosed, years into your journey, or supporting someone you love, it's a chance to hear directly from an expert and ask what's on your mind.

Every session is free, fully virtual, and recorded – register and we'll email you the recording afterward!

The lineup:

❤️ Sept 3 – Arrhythmogenic cardiomyopathy (ACM, also known as ARVC) with Dr. Harikrishna Tandri, Vanderbilt University Medical Center
💙 Sept 15 – Wolff-Parkinson-White syndrome (WPW) with Dr. Aarti Dalal, Vanderbilt University Medical Center
💚 Sept 17 – CPVT (catecholaminergic polymorphic ventricular tachycardia) with Dr. Shubhayan Sanatani, BC Children's Hospital
💜 Sept 22 – Brugada syndrome with Dr. Andrew Landstrom, Children's Hospital of Philadelphia
💛 Sept 24 – Long QT syndrome (LQTS) with Dr. Peter Aziz, Cleveland Clinic

All sessions are 6:30 PM ET (CPVT begins at 7:30 PM ET), online via Zoom.

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You shouldn't have to worry about your child's safety at school. But we know that sending a child with a genetic heart c...
08/24/2026

You shouldn't have to worry about your child's safety at school. But we know that sending a child with a genetic heart condition back to the classroom can be hard – whether it's your first time or you've been navigating back-to-school for years.

You don't have to figure it out alone, or start from scratch. FIA's free Safe School Kit gives you everything to prepare your child's school or camp, including:

– Emergency care plans to complete with your medical team
– Ready-to-send letters for teachers and coaches
– A back-to-school checklist
– Your rights under Section 504

So teachers, coaches, and nurses can care for your child with confidence – and your child can focus on just being a kid. 💙

Download it free at https://www.fiacardiac.org/schools/families.

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08/22/2026

Getting a diagnosis can stir up fear, uncertainty, and a lot of "what ifs."

In this short clip, clinical health psychologist Dr. Samuel Sears shares four steps for emotionally working through a diagnosis and beginning to rebuild your confidence. Dr. Sears has spent more than 30 years helping people with inherited arrhythmia conditions and ICDs manage anxiety and improve their quality of life.

Watch the full webinar, Managing Fear and Rebuilding Confidence, for more at https://www.fiacardiac.org/updates/mental-health-with-inherited-arrhythmias-managing-fear-uncertainty-and-doubt.

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Swipe to check out recent papers published on LQTS detection, Brugada, HCM and ACM risk stratification, and S-ICD outcom...
08/21/2026

Swipe to check out recent papers published on LQTS detection, Brugada, HCM and ACM risk stratification, and S-ICD outcomes based on gender.

To access these full articles - and to get monthly emails with the latest advances for inherited arrhythmias - make sure to sign up for our monthly Research eNews at https://www.fiacardiac.org/sign-up.

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What is a genetic variant? 🧬Genetic testing looks at your DNA – the set of instructions that makes you who you are – and...
08/20/2026

What is a genetic variant? 🧬

Genetic testing looks at your DNA – the set of instructions that makes you who you are – and checks for small changes, called genetic variants, that can cause an inherited heart condition.

Swipe through to see how a tiny "misspelling" in your DNA works, why it can affect your heart, and what finding it means for you and your family.

Then explore more on our new website: understanding your results, insurance coverage, testing your family, and when to consider retesting – all at the link in our bio, or fiacardiac.org/navigating-care/genetic-testing.

Need help accessing genetic testing or making sense of your results? Reach out anytime at [email protected]. You're not alone. ❤️

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08/20/2026

Check out this episode of UpBeat by HRS with our CEO Walker Frahm!

Jackson was just a teenager getting a routine sports physical so he could try out for water polo. He has no symptoms and...
08/18/2026

Jackson was just a teenager getting a routine sports physical so he could try out for water polo. He has no symptoms and felt totally healthy. Then Jackson's EKG came back abnormal. Twice.

The diagnosis: Wolff-Parkinson-White syndrome (WPW), an extra electrical pathway in the heart that can trigger dangerously fast rhythms. It had been framed as a "one percent of one percent" chance, so hearing it confirmed left him stunned.

"I remember my mind racing with a million questions, but really being unable to articulate them, out of pure nerves," he says.

The path forward was a surgery, called an ablation, to eliminate the extra pathway. When he woke up, he got the news he'd been hoping for, first from his mom, then his nurse: a complete success. Four weeks later, he was back in the pool.

Today, Jackson is better than ever. He's still playing water polo, back in the gym, and is grateful for the routine screening that caught what he never knew was there.

Read Jackson's full story at https://www.fiacardiac.org/updates/the-one-percent-of-one-percent-jacksons-wpw-story.

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You may know Erin as the “wizard” behind our webinars and Q&As, or heard her kind voice on the phone when you call our o...
08/18/2026

You may know Erin as the “wizard” behind our webinars and Q&As, or heard her kind voice on the phone when you call our office. Maybe you’ve also met her at one of our conferences. She's been a part of the FIA team for almost ten years, and is our Director of Program Operations here at FIA.

When we asked her about the new FIA name, Erin said "FIA to me means a new beginning, not just in name, but in how we show up for our community. It's a new path that feels tied to who we are and where we're headed".

Whether you're newly diagnosed, have lived with an inherited arrhythmia for years, or came to us after losing someone you love, we want you to know that you belong here. We are still here for you, and we always will be. ❤️

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Meet Martijn – a researcher on Dr. Michael Ackerman's team at Mayo Clinic, a longtime volunteer on our FIA Research Comm...
08/16/2026

Meet Martijn – a researcher on Dr. Michael Ackerman's team at Mayo Clinic, a longtime volunteer on our FIA Research Committee, and a member of our long QT syndrome (LQTS) community himself.

He stands on both sides of inherited arrhythmias: both the science and the personal, lived experience. And when we asked what FIA means to him, he chose three words: community, support, interaction.

That's the heart of what we're building: a place where researchers, clinicians, and families aren't separate groups but one connected community, working toward the same future. ❤️

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Many of you know the wonderful Dr. Susan Etheridge, who's been part of our foundation since nearly the beginning, standi...
08/15/2026

Many of you know the wonderful Dr. Susan Etheridge, who's been part of our foundation since nearly the beginning, standing alongside our founder, Dr. Michael Vincent, through decades of progress in the field of genetic heart rhythm conditions.

Our work is grounded in the expertise of leading clinicians and researchers, like Dr. Etheridge, from medical centers around the world – experts who volunteer their time to weigh in on complex cases, guide families to the right care, and make sure everything we share reflects the most current science. That scientific rigor is what makes FIA a trusted resource for families and clinicians alike, and what helps raise the standard of care across the field.

For Dr. Etheridge, our new name is an extension of that same work: language that matches how clinicians already think and talk, making referrals easier and connections stronger for everyone we serve. ❤️

Learn more at https://www.fiacardiac.org/updates/sads-is-now-fia.

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