SADS (Sudden Arrhythmia Death Syndromes) Foundation

SADS (Sudden Arrhythmia Death Syndromes) Foundation Our mission: to prevent life-threatening arrhythmias so families with genetic heart conditions can live fully and thrive beyond diagnosis. 💖🧬

06/17/2026

What is shared-decision making, and how can it help you balance your heart diagnosis with staying active?

Listen as Dr. Rachel Lampert, Yale, explains the concept of shared decision-making at our recent Sports & Exercise webinar. She also talks about specific guidelines for each condition.

Watch the full recording at https://www.youtube.com/live/g37GVkT6Ufs?si=eO2BvF-_DnUDwAsB.

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Help us of Logan and Matt, both lost to CPVT 🕯️Leigh is sharing the light of her two sons to help spread awareness of ...
06/17/2026

Help us of Logan and Matt, both lost to CPVT 🕯️

Leigh is sharing the light of her two sons to help spread awareness of CPVT, and bring funds to the SADS Foundation that can be used to help families like hers find the right answers, treatments, and support. ❤️‍🩹

Please join us in remembering Matt and Logan by leaving a 🕯️in the comments, and visit http://sads.org/light to share your person's story or make a donation in honor of Matt, Logan, and all the other bright lights we've lost to inherited arrhythmia conditions.

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06/16/2026

This is our why ❤️‍🩹 Learn more and donate at https://sads.donorsupport.co/page/ShareTheirLight.

Over the past month, you've seen our social media posts and heard directly from Tia, Walker, Nancy, and Jen about how their losses drive their work for our community.

While more and more people are now living and thriving with inherited arrhythmias, the truth is, untimely deaths are still part of our story. And until that number is zero, we will keep working to support our community.

Please donate to our Share Their Light campaign in memory of Brayton, Lavinia, Jack, Sharon, Frankie, and the countless others we've lost much too soon to these conditions.

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Your Heart. Our Mission.Every heartbeat matters. We exist for the families navigating life with a genetic heart conditio...
06/14/2026

Your Heart. Our Mission.

Every heartbeat matters. We exist for the families navigating life with a genetic heart condition, and for those who have lost someone far too soon.

Whether your you're newly diagnosed, supporting a loved one, or honoring someone you've lost, we are here for you.

06/13/2026

🎥 In this clip from a recent webinar, learn more about the ARTEMIS Study - the first-in-human gene therapy trial for CPVT, now actively enrolling patients with a pathogenic or likely pathogenic variant in the RYR2 gene.

The trial is studying whether SGT-501, an investigational gene therapy from Solid Biosciences given via a single IV infusion, is safe, tolerable, and effective in humans. SGT-501 is designed to insert a copy of a functional gene into your cells with the goal of potentially changing the underlying cause of CPVT, rather than just managing symptoms.

ARTEMIS is currently enrolling at sites across North America:
🏥 Minnesota · Massachusetts · Ohio · British Columbia (Canadian residents only)

The investigational gene therapy and all study-related assessments are provided at no cost, and participants are reimbursed for reasonable study-related expenses.

Have questions about the trial, want help connecting with a site, or want to learn more about gene therapy and research? Visit https://sads.org/research/get-involved/solidcpvttrial/ 💙

From across the Atlantic, Isla's family is helping . 🕯️Isla had Long QT Syndrome, and her family has been part of our c...
06/12/2026

From across the Atlantic, Isla's family is helping . 🕯️

Isla had Long QT Syndrome, and her family has been part of our community through every chapter: from diagnosis to loss. Now, they're sharing Isla's light to help us keep showing up for families like theirs.

"By taking part in the Share Their Light campaign this year, I hope to now support the SADS Foundation and help them continue to provide all the amazing things they give to our community," says her father, Dave.

Donate in Isla's name or share your person's light with us at sads.org/light. 💙

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A SADS diagnosis can feel like a lot to carry, but you don't have to figure it out alone. Swipe through to see how the S...
06/11/2026

A SADS diagnosis can feel like a lot to carry, but you don't have to figure it out alone. Swipe through to see how the SADS Foundation can support you and your family every step of the way.

Support Groups: A safe, open space to connect with others who truly understand what you're going through.
1-on-1 Family Support: Personalized guidance for your family's unique journey, wherever you are in the process.
Free Webinar Library: Expert-led sessions on SADS conditions, ICDs, anxiety, parenting, and more. Available anytime, at no cost.
Finding the Right Doctor: Resources to help you locate a specialist who can give you and your family the best possible care.
Insurance Help: Guidance on appeals, AED coverage, and answers to the insurance questions that can feel overwhelming to navigate.

Whatever you need, there's a place to start.

06/10/2026

Tia is sharing Brayton's light - and asking you to share your person's light, too.

Join our spring campaign and help protect families facing inherited arrhythmias.

💙 Donate: sads.org/light.

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If you can unlock a phone, knead bread, or push a stroller, you can do CPR. 💙It's not a skill reserved for professionals...
06/06/2026

If you can unlock a phone, knead bread, or push a stroller, you can do CPR. 💙

It's not a skill reserved for professionals – just push hard and fast on the center of the chest until help arrives!

After sudden cardiac arrest, the person nearest matters most. As CPR & AED Awareness Week wraps up, remember: by jumping into action, YOU can save a life. You don't have to be perfect; you just have to act!

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An AED can increase a person's chance of survival by 74% when used within the first few minutes of collapse. 💙Sudden car...
06/05/2026

An AED can increase a person's chance of survival by 74% when used within the first few minutes of collapse. 💙

Sudden cardiac arrest often strikes without warning. An AED is designed for ordinary people to use – it guides you through every step and only shocks if it's needed. This CPR & AED Awareness Week, find out where your nearest AED is. Being ready to act in a cardiac emergency is something every one of us can do!

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4527 South 2300 East #104
Salt Lake City, UT
84117

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