Sisters by Heart

10/13/2026

Exciting progress in congenital heart care. ❤️

The FDA has approved the first heart valve designed to grow with children, potentially reducing the need for repeat surgeries as children grow.

Innovations like this reinforce something we believe deeply at Sisters by Heart: the experiences of patients and families matter as new devices, therapies and clinical trials are developed.

The future of congenital heart care is strongest when researchers, clinicians, regulators, industry, patients and families all have a seat at the table.

Today, we approved the first heart valve device designed to grow with children. The Autus Size-Adjustable Valve, a surgically implanted pulmonary heart valve for pediatric patients with congenital pulmonary valve disease can be expanded after surgery to keep pace with growth. The adjustable valve may mean fewer repeat surgeries for children as they get older.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-heart-valve-designed-grow-children

Congenital heart defects are among the most common types of birth defects in the United States, affecting about 1 in every 100 births. The valve was approved through the premarket approval pathway, the FDA's most rigorous review process for medical devices.

10/07/2026

Introducing the Single Ventricle Community Experience Collaborative (SVxC), a Sisters by Heart initiative.

Patients and families living with single ventricle heart disease know things no one else can: the daily challenges, the gaps in support, and the changes that would make a real difference. That experience can help set research priorities, improve care, and inform how new treatments and devices are developed and reviewed.
Sisters by Heart has walked alongside single ventricle families for years through care packages, peer connections, and plain language research resources. SVxC builds on that foundation by bringing patients and families together with healthcare systems, community organizations, researchers, and drug and medical device developers on real projects. We're starting in the single ventricle community, and the tools, evidence, and partnerships we build can also inform work across congenital heart disease.

Through SVxC, we will:
•Prepare patients and families to contribute to research, care, and product development, building on SBH's programs and resources

•Connect people through bidirectional mentorship and match them with community opportunities, research projects, care improvement work, and leadership roles

•Build evidence from lived experience by identifying shared priorities and what matters most for quality of life

•Show the difference by working on defined projects and sharing what changes because the community contributed

Help us build the collaborative. We're opening our founding phase now so the community can shape SVxC ahead of the planned 2027 launch. Whether you want to share your priorities as an individual, explore a partnership, or bring your organization into this work, there's a place for you in the founding community. No research experience needed.

Fill out our interest form to stay connected and get details about our information session on Saturday, November 7th, 2026.

https://wkf.ms/4yxF3Rd

Where lived experience becomes evidence.

09/30/2026

We hope you’ll join us for this! Keep your eyes peeled for our travel scholarship applications for patients and families- opening in February!

BIG NEWS: Save the date for the SV-ONE Spring 2027 Learning Session on May 14-15, hosted by Children's Health (Dallas)! Additional details regarding the agenda, hotel accommodations, and registration will be shared soon!

09/29/2026

🫀 TODAY IS WORLD HEART DAY. 🫀

But some hearts have been fighting a little harder since day one.

🫀 Single ventricle = one ventricle doing the work normally shared by two.
🫀 Many of us have multiple surgeries and a Fontan circulation.
🫀 Fontan isn’t a cure, it’s a LIFELONG journey.
🫀 And yes… we grow up.

We are more than our diagnosis.
More than our scars.
More than our surgeries.

Different heart. Same right to a FULL life.

This World Heart Day, remember the hearts born different.

Rare doesn’t mean forgotten.

09/07/2026

This Labor Day, we’re celebrating the hardest workers we know - Single Ventricle warriors, parents, caregivers, healthcare heroes, advocates, and everyone fighting for a better future.

Because around here, “hard work” isn’t just a phrase. It’s survival. It’s strength. It’s LIFE. ❤️‍🔥

Happy Labor Day, SV family! 🇺🇸🫀

Tag someone who NEVER stops fighting. 👇

09/04/2026

Medtronic, thank you. 💙

At PICS this year, Medtronic turned engagement at their booth into meaningful support for Sisters by Heart, pledging a donation for every person who stopped by.

Their generosity resulted in a $10,000 contribution, strengthening our Community Fund and helping us continue providing care packages, resources, and connection to patients and families navigating single ventricle heart disease.

To everyone who stopped by the booth to make this happen, thank you. And to Medtronic, for standing with our community in such a meaningful way, we are incredibly grateful.

07/13/2026

We are incredibly honored to be the recipient of this very special fundraiser held in memory of Charlie. 💙
Charlie’s single ventricle journey, along with the mission of Sisters By Heart, was shared during a high school theatrical performance directed by his uncle, Jacob. Through the generosity and compassion of this wonderful community, even more individuals and their families will receive the support they need.
Jacob, thank you for honoring your nephew’s legacy in such a meaningful way and for using your gifts to make a lasting difference. Charlie’s impact continues to be felt, and we are so grateful to everyone who helped make this fundraiser possible.

07/10/2026

❤️💙 Roll Call: Single Ventricle Community

If you’re living with a single ventricle—or love someone who is—drop a ❤️💙 in the comments and tell us:

✨ Your age
✨ Your diagnosis
✨ Your Fontan (or other surgery) year
✨ One thing you wish more people understood about living with a single ventricle

Every story is different, but together we remind each other that no one walks this journey alone.

Whether you’re a parent, patient, caregiver, family member, or someone remembering a loved one, your voice matters here.

Let’s fill the comments with hope, encouragement, and connection. You never know who needs to see someone else’s story today.

💙 ❤️ Tag someone in the single ventricle community who should join the conversation.

07/04/2026