SADS (Sudden Arrhythmia Death Syndromes) Foundation

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/.

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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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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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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08/08/2025

One hour until our next SADS Live!

We now have Deena McAndrew, RN, CPN from Pediatric Cardiology /Electrophysiology at the University of Iowa Stead Family Children’s Hospital, hosting our live today.

Deena McAndrew will be on SADS Live with 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 TODAY August 8th at 2:20 EST to listen!

Head to our Youtube Channel to watch!
https://www.youtube.com//streams

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08/06/2025

"This is the beginning of a story I’ve carried in my heart for a long time.

Our daughter Liv was diagnosed with on her very first day of life — a rare genetic heart condition that changed everything.

This blog is my honest, vulnerable attempt to share what it’s like to live with that diagnosis… and to show the strength, love, and light of one incredible little girl."

Thank you to Elise for sharing her story of Liv all the way from Belgium! We're proud to help families across the globe at the SADS Foundation ❤️🌍

Read the full story➡️ https://sads.org/blog-cat/%f0%9f%92%9b-our-daughter-liv-a-story-of-love-resilience-and-hope/

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08/05/2025

Get ready for another SADS Live!

This Friday our SADS Live is with Brynn Dechert-Crooks, NP from CS Mott Children’s 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!

Click the link below, or head to our bio to learn more.
https://www.youtube.com//streams

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08/05/2025

Have you heard about our ICD Support Group?

The SADS Foundation is here to support you on your heart journey. We created our ICD Support Group for anyone who is living with an ICD or S-ICD. This virtual support group is a safe, open space to talk about your experiences and it is facilitated by peers who know just what you’re going through.

DM us SUPPORT GROUP to get these resources in your inbox or visit https://sads.org/what-now/support-groups/ to learn more.

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07/29/2025

Alice's career has been filled with remarkable achievements. Alice is known as being the heart of SADS and for the compassionate way she has connected with and served families over the years. These personal connections with the SADS community may be considered her greatest accomplishment.

We are thankful that we get to partner with amazing companies, like Tenaya, that share the same drive and dedication to help those with inherited heart conditions.

We congratulate .lara.79, retiring CEO of the SADS (Sudden Arrhythmia Death Syndromes) Foundation on a career filled with remarkable achievements! Alice is a force of nature, and her dedication, compassion and drive have helped countless people living with SADS conditions.

We look forward to partnering with her successor, Walker Frahm and the SADS Foundation team in continuing to raise awareness of genetic arrhythmogenic heart conditions.

07/29/2025

We're excited to share our 2024 Annual Report — a celebration of what we’ve achieved together. From raising awareness to supporting families, our community made a huge impact in 2024.

Check out the stories, milestones, and what’s ahead in 2025:
📖 https://online.fliphtml5.com/detnm/bnxa/

If you're inspired by what you see, please consider a donation to keep the momentum going:
❤️ https://sads.org/donate

🏷️ 🏷️

07/28/2025

At just 26, Ryan Weidler's life was cut short suddenly by an undiagnosed heart rhythm condition. Now, his family and friends are keeping his legacy alive through the annual Ryan Weidler Golf Tournament ⛳❤️, raising awareness and funds to prevent other families from experiencing the same tragedy.

"Ryan would do anything for anyone, especially his family," says his mother, Carol. "We've carried on Ryan’s giving spirit, forging connections with people and charities supporting research, genetic testing, youth programs, and CPR and AED preparedness."

Today marks the 20th Annual Ryan Weidler Golf Tournament Fundraiser, which benefits SADS and other organizations that help prevent heart tragedies.

Read more about Ryan and this event at https://sads.org/blog-cat/a-life-cut-short-a-legacy-goes-on-ryan-weidler-golf-tournament-fundraiser/.

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