SADS (Sudden Arrhythmia Death Syndromes) Foundation

SADS (Sudden Arrhythmia Death Syndromes) Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from SADS (Sudden Arrhythmia Death Syndromes) Foundation, 4527 South 2300 East #104, Salt Lake City, UT.

Established on December 12, 1991 by Dr. Michael Vincent, The SADS Foundation is a community of families, medical professionals, and supporters saving lives and advancing care for people with heart arrhythmia conditions that can lead to sudden death.

This summer, and every summer, our rare heart community has accomplished so many things. We are so proud and thankful fo...
08/28/2025

This summer, and every summer, our rare heart community has accomplished so many things. We are so proud and thankful for everything each and every one of you did to spread awareness.

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Grief can show up in many ways — fatigue, anxiety, numbness, difficulty concentrating, or changes in appetite and sleep....
08/27/2025

Grief can show up in many ways — fatigue, anxiety, numbness, difficulty concentrating, or changes in appetite and sleep.

Whatever you're feeling, know that it's a valid part of grieving and you're not alone.
The SUDC Foundation and The SADS Foundation are here to support you.

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Have you — or a loved one — been diagnosed with CPVT? We know how many families are eager for progress in treatment — an...
08/26/2025

Have you — or a loved one — been diagnosed with CPVT? We know how many families are eager for progress in treatment — and we’re excited to share important news about a new investigational gene therapy.

Join us for a live, interactive community webinar with Solid Biosciences as they introduce their upcoming clinical trial, ARTEMIS, evaluating the investigational gene therapy SGT-501.

(Can’t make it live? No problem — register anyway and we’ll send you the full recording as soon as it’s available.)

Register at https://sads.org/what-now/living-with-sads-webinars/.

This Saturday is National Grief Awareness Day, but we decided that it needs a whole week. At the SADS Foundation, we kno...
08/25/2025

This Saturday is National Grief Awareness Day, but we decided that it needs a whole week.

At the SADS Foundation, we know it’s important to speak their names. This is a space where you can share your loved one’s name(s) in the comments. They live on through your memories. Please feel free to share a beautiful memory here. ❤️‍🩹

Wherever you are at in the grieving process, we are here for you. Please don't hesitate to reach out to us via DM or Email.

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Learn more about currently enrolling research opportunities this August - including clinical trials and gene therapy tri...
08/22/2025

Learn more about currently enrolling research opportunities this August - including clinical trials and gene therapy trials! - at https://sads.org/research/get-involved/. Make sure to fill out our Research Survey, too - so you can be the first to hear about new studies and trials via email.

We're here for you at the SADS Foundation as you decide whether participation in a study, clinical drug trial or gene therapy trial is right for you. Feel free to DM us, email us at Info@SADS.org, or call/text our support line at 801-948-0654 with any questions.

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At just 8 years old, Francesca told her mom she felt “sugary” — her way of describing the racing heartbeat that would la...
08/21/2025

At just 8 years old, Francesca told her mom she felt “sugary” — her way of describing the racing heartbeat that would later be diagnosed as Supraventricular Tachycardia ( ). 💔

For years, her episodes came without warning: her heart racing up to 250 beats per minute, sometimes lasting hours. School alarms were raised, sleepovers meant extra worry, and countless ER visits left Francesca and her family searching for answers.

At 12, Francesca was officially diagnosed, and later underwent an ablation that changed everything.

Today, she’s living fully — joining track, field hockey, and squash for the first time — without fear of her heart holding her back. And now, at just 16, she’s using her story to raise awareness and support other kids facing the same fears. 💛

Learn more about her story at https://sads.org/blog-cat/francescas-heart-journey-from-patient-to-advocate/.

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My AED and me go together like Travis and Taylor.... Travis and Taylor are in our hearts - so we wanted to make some he...
08/20/2025

My AED and me go together like Travis and Taylor....

Travis and Taylor are in our hearts - so we wanted to make some heart-related TSwift content for you to enjoy and share! Do you have any caption ideas? Let us know in the comments!

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✨ Big news for the SADS community! In September 2025, we’re meeting with the CDC to introduce ICD-10 codes for CPVT, ACM...
08/19/2025

✨ Big news for the SADS community! In September 2025, we’re meeting with the CDC to introduce ICD-10 codes for CPVT, ACM, and Brugada Syndrome.

Why does this matter? Having an official diagnosis code means better care and support for families. Here’s how:

✅ Smoother insurance approvals for treatments (like an at-home AED)
✅ Helps doctors quickly find the right diagnosis and connect you with experts
✅ Accelerates research by showing how many people are truly affected

We worked on this years ago for LQTS families — and now it’s time for CPVT, ACM, and Brugada families to benefit too. 💜

🔗 Learn more: https://sads.org/get-involved/advocate/icd10codes/.

Entering our Orange Era....🧡Did you hear Taylor Swift recently shared about how cardiac screening saved her fathers life...
08/14/2025

Entering our Orange Era....🧡

Did you hear Taylor Swift recently shared about how cardiac screening saved her fathers life?
Here at SADS we have our own cardiac screening tool for our community to use.
Learn more at the link below.

https://sads.org/schools/school-risk-assessment/

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Finding a doctor who truly understands your rare genetic heart condition can be challenging — but you don’t have to do i...
08/13/2025

Finding a doctor who truly understands your rare genetic heart condition can be challenging — but you don’t have to do it alone. ❤️
Our Physician Referral Network connects you with doctors who:
✔️Listen to your concerns
✔️Follow the latest treatment guidelines
✔️Work with your other care providers

Whether you need a new doctor or a second opinion, we can help.

You can learn more or find a physician near you by clicking the link below.
https://sads.org/what-now/find-a-doctor/

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We need YOUR feedback!We heard and we listened. SADS needs your feedback about YOUR Health Insurance Experiences with a ...
08/08/2025

We need YOUR feedback!

We heard and we listened. SADS needs your feedback about YOUR Health Insurance Experiences with a Genetic Heart Condition. We understand that Health Insurance can be difficult and we would love to hear your experiences. You can fill out this survey at the link below.

https://forms.gle/s2eAujPq1zH6G7Te9

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08/08/2025

Get ready for another SADS Live!
This Friday our SADS Live is with We have a new host Deena McAndrew, RN, CPN from the University of Iowa Stead Children’s Hospital, and guest Angel Carter BSN, RN from Project Adam. They are going to talk about all things going back to school. Make sure to tune in this Friday, August 8th at 2:20 EST to listen!

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

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