FIA | Inherited Arrhythmias

We're the Foundation for Inherited Arrhythmias (formerly SADS) 💕🧬 Support, resources, and community below ⬇️

[FIA | Inherited Arrhythmias @fiacardiac]

The SADS Foundation is now FIA, the Foundation for Inherited Arrhythmias.❤️

New name, same mission. Everything lives at https://t.co/g0tjfweMnP – and we're most active on Instagram and Facebook @fiacardiac.

[UpBeat by the Heart Rhythm Society @UpBeatbyHRS]

Introducing FIA: Foundation for Inherited Arrhythmias

In the latest episode of UpBeat TV, host @brynndechert30 sits down with Walker Frahm, CEO of FIA, to talk through the organization's rebrand and what it means for the inherited arrhythmia community.

Walker discusses the story behind the new name, the foundation's continued commitment to research, education, and advocacy, and what's ahead for FIA.

Stay connected with FIA today: @fiacardiac

[FIA | Inherited Arrhythmias @fiacardiac]

We’re working on something really exciting. This is a time of incredible advances and hope for our community - and we can’t wait to step into the future together with you ❤️

Stay tuned for a big announcement coming in the next week 👀

[John Giudicessi MD, PhD @JohnGiudicessi]

Promising interim data from @TenayaThera’s RIDGE-1 trial of AAV9 PKP2 gene replacement therapy presented this morning @ASGCTherapy Annual Meeting. Big thanks to the @MayoClinic @MayoClinicCV PKP2-ARVC patients that participated and @SADSFoundation for supporting GHD patients.

[Solid Biosciences @Solid_Bio]

We’re honored to have attended and sponsored @SADSFoundation’s Challenging Cases in Inherited Arrhythmias Symposium and Reception last week.

Our team was on the ground to support the foundation in its important research and awareness surrounding genetic heart rhythm conditions and share details about our investigational gene therapy, SGT-501, for treating catecholaminergic polymorphic ventricular tachycardia (#CPVT).

#GeneTherapy

[FIA | Inherited Arrhythmias @fiacardiac]

@OneRhythmOrg We're so glad it was helpful! We hope to see you again next month. ❤️

[FIA | Inherited Arrhythmias @fiacardiac]

Today, we’re launching our brand-new SADS Foundation Health Navigation Tool with Citizen Health.

You gain tools to manage your health journey today; and together, we can help accelerate research for families worldwide. Learn more and sign up at https://t.co/JmsuJzQyqZ.

[FIA | Inherited Arrhythmias @fiacardiac]

Chevy is 17 now – funny, kind, and the kind of kid people remember after meeting him. But his family’s journey to a diagnosis started long before they ever heard the words #CPVT.

Read more about Chevy's fight for answers at https://t.co/qAfcbsXzc2.

[FIA | Inherited Arrhythmias @fiacardiac]

📣 Save the Date!

The 2026 International SADS Foundation Conference is coming to Houston, Texas.
🗓 November 13–15, 2026
📍 In partnership with Texas Children’s Hospital

Join us for a weekend of learning, connection, and community.

[FIA | Inherited Arrhythmias @fiacardiac]

National Heart Month is all about awareness & community.

To everyone navigating genetic 💖rhythm conditions: we see you, and we’re here for you year-round. Learn more: https://t.co/mVZdDv5T60.

Thanks to @ThryvTrx for their sponsorship.

[FIA | Inherited Arrhythmias @fiacardiac]

Research alert! @ThryvTrx has just launched a clinical trial for a new medication that could potentially shorten the QT interval in people with LQTS Type 2.

Learn more about this trial and eligibility at https://t.co/NPFILODDYq.

[ASGCT @ASGCTherapy]

ASGCT is proud to lead nonprofits, academic medical centers, and patient advocacy groups in urging Congress to pass the Mikaela Naylon Give Kids a Chance Act and reauthorize the Rare Pediatric Disease Priority Review Voucher Program. Together, we’re elevating the voices of rare #pediatric disease patients to highlight the real-world impact of this critical program. Read more: https://t.co/NRIE9vh3MJ

#ASGCTadvocacy #PRV #RareDiseases

[FIA | Inherited Arrhythmias @fiacardiac]

Research alert! @RocketPharma is now enrolling people with ARVC (also known as ACM) with a PKP2 pathogenic (or likely pathogenic) genetic variant for a natural history study.

Learn more at https://t.co/I19mzJoxGV.

[FIA | Inherited Arrhythmias @fiacardiac]

We're excited to welcome Erica, a genetic counselor, to our Family Support team! 💖🧬

Erica joined the staff because she’s seen how transformative it can be when families receive answers, and she’s honored to help them understand what those answers mean in their day-to-day life.

[Genetic Counselors @GeneticCouns]

📣NEWS: The #AccesstoGCs Act has been reintroduced in the U.S. Senate!

The reintroduction marks real progress toward expanding care and recognizing the essential role genetic counselors play in the healthcare system. We’re grateful for all who have made this day possible.

[FIA | Inherited Arrhythmias @fiacardiac]

Today is the day!
Join #SADSLive with Andrew P. Landstrom (Duke Children's Health Center Cardiology Clinic) for a Q&A—bring your questions.

TODAY Friday, January 9th, 2026
2:20 PM ET
https://t.co/EDsCgcXeSJ

[FIA | Inherited Arrhythmias @fiacardiac]

Join #SADSLive with Andrew P. Landstrom (Duke Children's Health Center Cardiology Clinic) for a Q&A—bring your questions.

FRIDAY Friday, January 9th, 2026
2:20 PM ET
Drop your questions in the comments so we can get them answered!

https://t.co/EDsCgcXeSJ

[FIA | Inherited Arrhythmias @fiacardiac]

As we step into a new year, we’re holding space for growth, healing, and hope.
These are a few resolutions on our list—what’s on yours?

🏷️ #SADSCommunity #NewYears2026 #HeartHealth #HeartFamily

[FIA | Inherited Arrhythmias @fiacardiac]

Stepping into the new year with full hearts.

We’re so grateful for this community—families, physicians, advocates, and supporters—who make everything we do possible.

Here’s to another year of learning, support, and lifesaving work together. ✨

[FIA | Inherited Arrhythmias @fiacardiac]

Matt was flying a routine commercial flight when he suddenly went into SCA. Quick-thinking co-pilots started CPR, used an AED, and saved his life. Matt is alive, but he and his family still don’t have the “why” behind what happened. Donate today to SADS https://t.co/A7b3l1Ksjk.