SADS (Sudden Arrhythmia Death Syndromes) Foundation

04/09/2026

FAQ of the Month: Can LQTS skip generations?

While it may look like Long QT Syndrome (LQTS) skips generations in some families, it actually doesn’t. Not every person with LQTS has symptoms (fainting, sudden cardiac arrest, seizure-like episodes) or even a prolonged QT interval. In fact, nearly half of those with LQTS never have symptoms!

Because of this, it may look like LQTS skips generations; however, the gene itself does not skip generations.

The gene is passed through the family, so if you don’t inherit or have the genetic variant, you can’t pass it down to the next generation – the gene itself can’t skip generations.

If you have any questions, don't hesitate to reach out via comment or DM!

04/07/2026

What role does your heart story play in advancing inherited arrhythmia research? More than you might think!

Join us Tuesday, April 14 for a webinar with Dr. Andrew Landstrom (Children's Hospital of Philadelphia) as he breaks down how natural history studies work, why they matter, and how patient participation directly shapes new therapies and breakthroughs.

🗓 April 14 | 7:30 PM ET📍 Online | Register at https://sads.org/what-now/living-with-sads-webinars/.

04/07/2026

We're LIVE on YouTube with a webinar about natural history studies! Join us at https://www.youtube.com/watch?v=bFDBUFtSXVE to ask your questions.

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

04/06/2026

We’re sharing your experience with the FDA, researchers, biopharma companies, healthcare providers, product developers, and federal regulatory partners so they can better understand what it’s like to live with cardiomyopathies - and why new therapies, including gene therapies, are urgently needed.

This year’s EL-PFDD meeting will focus on genetic cardiomyopathies and gene therapy development on April 23, 2026.

If you have a genetic heart muscle condition, we need your input!

Take our survey: https://buff.ly/yFYA8Vw
Register for the event on April 23: https://buff.ly/DT4ctmX

04/03/2026

Got questions about your heart? Dr. Michael Ackerman has answers. Drop in Tuesday and ask away.

📋 What: A live Q&A with Dr. Michael Ackerman, Mayo Clinic - your questions about inherited arrhythmia conditions, answered in real time
📅 When: Tuesday, April 7 at 12:20 pm ET
📍 Where: Live on Facebook, Instagram and YouTube - follow along and drop your questions in the comments

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04/02/2026

Patients and families don't just benefit from rare disease research – they drive it. 🔬

Did you know that natural history studies are critical to the discovery of new therapies in rare diseases? Join our webinar to learn how a mom of a child with a rare disease partnered with her rare disease community to move mountains to bring a new therapy to clinical trial – and how you can become a partner in building the science that leads to new treatments.

Register for our upcoming webinars on natural history studies at https://sads.org/what-now/living-with-sads-webinars/.

04/01/2026

Your voice belongs in the room. We brought it to . 💙

SADS CEO, Walker Frahm, and our Director of Family Support and Research, Genevie Echols, attended the American College of Cardiology Scientific Sessions in New Orleans to represent the voice of patients living with arrhythmogenic cardiomyopathy. They spoke on a panel with ACM expert Dr. Dan Judge and shared insights surrounding unmet needs, obstacles patients face, and access to genetic testing.

03/31/2026

An ICD shock can be frightening - and the emotional aftermath is real. Researchers at the University of Washington want to help. The ICD Shock SMART study is now enrolling people 21+ who've experienced an ICD shock within the past week - no travel required.

Learn more at https://sads.org/research/get-involved/icd-study/.

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03/31/2026

Gene therapy for BAG3 cardiomyopathy is moving forward — and you can hear directly from the researchers behind it. Join us April 15 at 6pm ET for a free webinar with Genetic Cardiomyopathy Awareness and Rocket Pharmaceuticals Inc, featuring Dr. Mayur Kasetty on RP-A701, an investigational therapy designed to address the underlying genetic cause of BAG3-related dilated cardiomyopathy.

Register at https://us06web.zoom.us/webinar/register/WN_qhL0UggJTAmOMymTEWI7Ow #/.

03/28/2026

Mark your calendar for Heart Rhythm Community Connect, taking place at McCormick Place in Chicago, Sunday, April 26, from 10 AM – 3 PM.

Brought to you by the experts of the Heart Rhythm Society and endorsed by the SADS Foundation, this great new patient and caregiver event offers a full day of expert talks, practical guidance for living well with a heart rhythm condition, and shared community with those who “get it.”

Check out the agenda and RSVP today 👉 https://upbeat.org/heart-rhythm-community-connect-2026.

03/27/2026

☀️ Looking for a heart-safe summer camp for your child? We've got you covered.

From Alabama to Hawaii, there are incredible camps designed for kids with heart conditions — medically supervised, fun-filled, and welcoming families from across the country.

Tap the link to explore the full list and find the right fit for your family. 🔗 sads.org/sports-and-exercise/summer-camps-activities/

P.S. Your child doesn't have to go to a specialty camp to have a safe summer — any camp can be the right camp with the right preparation! Learn more about safety tips at the link above.

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03/26/2026

☀️ Summer is almost here — and we've got tips so kids with inherited arrhythmias can have the best summer yet!

With a little preparation and the right people in the loop, your child can enjoy camps, sports, and all the fun that summer has to offer. We're talking trips, hiking, making friends, and everything in between.

Here's what every family should know heading into summer. 🔗 Learn more at sads.org/sports-and-exercise/summer-camps-activities/.

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