SADS (Sudden Arrhythmia Death Syndromes) Foundation

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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.

11/12/2025

Family Health History Month reminder: many genetic arrhythmia conditions are inherited. If a parent carries one, each child has a 1 in 2 chance - just like a coin flip.

This week, start the convo:
• Write down your family’s heart history (fainting, seizures, sudden deaths)
• Ask your clinician about family screening
• Share results with relatives so they can be checked, too

We’re here to help your family navigate next steps. Learn more at https://sads.org/get-involved/awareness/family-health-history-month/.

11/11/2025

Research alert! Solid Biosciences recently began enrolling participants for a gene therapy trial for CPVT due to an RYR2 mutation.

Their study - called the ARTEMIS Study - is the first in-human clinical trial to see if an investigational gene therapy drug, called SGT-501, is safe, tolerable, and works in humans.

Quick Facts

📌 Trial Name: ARTEMIS Study
📌 Condition: CPVT caused by a pathogenic or likely pathogenic variant in RYR2
📌 Ages: Adults 18 years of age or older to begin with followed by those between the ages of 7 and 18 years old.
📌 Sites: United States and Canada (North America).

Learn more and get involved at https://sads.org/research/get-involved/solidcpvttrial/.

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11/11/2025

Our staff attended the American Heart Association Scientific Sessions this weekend - read on to learn the latest updates from top scientists! 🧬💗

CEO Walker, Director of Partnerships & Philanthropy Ken, and Programs Director Marcia met up with our Corporate Roundtable to hear the latest advancements in cutting-edge therapies; saw some of our favorite scientists (include Dr. Michael Ackerman and Rachel Lamphert, pictured); and attended Scientific Sessions to see what's on the horizon in research for genetic arrhythmia conditions.

Here's three major updates you'll want to hear about:

🧬 Genetic testing has gone through a huge cost reduction in the last decade. In 2001, it cost over $100M for a single genome to be sequenced, and this is now under $1K today.
💗 Health insurers and employers cannot discriminate against someone with a genetic diagnosis, and genetic testing is protected under HIPAA, just like all other medical information.
✨ Genetic testing informs risk, treatment decisions, and allows for the identification of at-risk family members - saving the lives of those with genetic heart conditions.

11/10/2025

Got questions about genetic heart rhythm conditions?
Join with with Andrew P. Landstrom (Duke Children's Health Center Cardiology Clinic) for a Q&A—bring your questions about Long QT, Brugada, CPVT, ARVC, and more.

Friday, Nov 14, 2025
2:20 PM ET
Watch on Facebook, YouTube, Instagram Live, or at the link below
https://www.youtube.com/watch?v=QvxH7_qSjTg

Drop your questions in the comments so we can get them answered!

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11/07/2025

What words best describe the SADS Foundation? What language do you use to describe your condition?

We’re inviting our community to share insights on the SADS Foundation and the terms you use when you talk about your heart condition. Your perspective helps ensure our language reflects the people we serve.

This ten minute survey will help the whole community - take it today at https://forms.gle/QxRn4Zsoj3BXwXPx6.

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11/06/2025

From strange pains in his chest as a kid to crossing Ironman finish lines, Alex’s Wolff-Parkinson-White (WPW) journey has come full circle.

At 12, a routine cardiology visit revealed WPW. A successful catheter ablation removed two accessory pathways - and with them, constant fear. Alex got his life back. He returned to sports, discovered triathlon, and this year qualified for the 2026 Ironman World Championships.

Now a second-year medical student, Alex hopes to be the kind of physician who makes patients feel safe and empowered - just like his doctor did for him. He recently connected with the SADS Foundation to share his story, and he's helping fundraise for families like yours through his races.

Read Alex’s full story at https://sads.org/blog-cat/racing-forward-alex-gaspers-journey-from-wpw-to-ironman-and-medicine/.

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11/05/2025

From family trees to first genes. Our Utah roots - your family’s roots - still guide lifesaving diagnosis. 🌲

Long QT Syndrome and other genetic arrhythmias were first uncovered by tracking multi-generation family pedigrees - mapping relatives, symptoms, and ECGs until the very first gene was found.

It’s even why our Foundation is based in Utah: world-class genealogy here helped make these discoveries possible.

This Family Health History Month, start the conversation about your heart history. If you live with a genetic arrhythmia like LQTS, your “answer” - the name of your condition and the gene behind it - exists because families shared their histories.

📝 Get a family history template and conversation starters: sads.org/get-involved/awareness/family-health-history-month

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11/02/2025

When 25-year-old Juliana from Switzerland was diagnosed with Brugada Syndrome - a rare heart condition that can cause sudden cardiac arrest - her world changed overnight.

After months of unexplained symptoms, hospital stays, and conflicting answers, she finally had a name for what was happening. But with few local resources and no Brugada support groups in her country, Juliana often felt alone - until she found the SADS Foundation.

“Doctors can treat the condition,” she says, “but they don’t always help you process the emotions that come with it."

Now, Juliana is turning her fear into purpose, volunteering with the SADS Foundation to raise awareness and connect others living with inherited arrhythmia conditions.

💬 “If sharing my story helps even one person find hope a little sooner, then it will all have been worth it.”

Read her story at https://sads.org/blog-cat/finding-strength-in-the-unknown-julianas-journey-with-brugada-syndrome/.

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11/01/2025

Family stories keep hearts beating strong.

This November, for National Family Health History Month, take time to talk with your loved ones about your family’s health - and heart - history.

Knowing your family’s story can help identify genetic conditions early, prevent tragedy, and save lives. Start the conversation this holiday season - it could make all the difference.

Learn more at https://sads.org/get-involved/awareness/family-health-history-month/.

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10/30/2025

Living with a rare or genetic heart condition can feel isolating — but you’re not alone.
91% of young adults with lifelong conditions say it’s important to know others “like them.”

That is why we offer multiple support groups for the SADS community to connect with people who truly understand your journey.

Our current support groups include, SADS Parent Connection, SADS Connection, Monthly Writing Workshop, and our ICD Support Group.

Click the link in our bio to find out more.

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10/29/2025

SCA is one of the leading causes of death in the U.S.—impacting 374,000+ families annually. If you’ve been affected, you’re not alone.
Learn CPR, know where the nearest AED is, and talk to your family about heart history.

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10/28/2025

When Matt collapsed during a dance rehearsal in New York City, it was his first symptom of ARVC - an inherited heart condition that can cause .

After surviving 15 minutes of CPR, multiple shocks, and weeks of recovery, Matt had to rebuild his life - and identity - as a dancer living with a serious heart condition. “After diagnosis, I had to give up my entire identity and career as a dancer,” he says. “But developing a mental capacity that can handle the chaos of this disease has been the most beneficial.”

With the support of his family, his care team, and the SADS Foundation, Matt has found a new balance - and is living fully again. “You don’t have to experience this journey alone,” he says.

From physician referrals to peer support, we’re here for every step of your journey with a genetic heart rhythm condition.

Read Matt’s full story at https://sads.org/blog-cat/arvc-awareness-matthews-story/.

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Address

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

Website

http://www.SADS.org/

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