Lurie Children’s Single Ventricle Center of Excellence

05/03/2026

Research Explained - Lifespan registry publication. Our very own Dr Kiona Allen Lurie Children's Heart Center is a co-author. ❤️🫶❤️

What have we learned from the first people to take part in the FON Legacy Registry?

Our newest Research Explained shares key takeaways from the new publication, highlighting how registry data can help us better understand health challenges for people with single ventricle heart disease (SVHD) across the lifespan.

Thank you to the individuals with SVHD, families, and care teams who made this learning possible.💙

🔗 Check out the Research Explained summary and research article: https://www.svone.org/news/first-fon-legacy-data-registry-publication-releasednbsp

05/03/2026

Today we honor the mothers whose hearts carry a love that never fades.

Bereaved Mothers Day is a reminder that motherhood does not end… it changes. It lives on in memory, in love, and in the quiet strength it takes to keep going.

To every mother grieving a child — we see you. We honor you. We stand with you.

Your child is forever a part of you. Your love is forever. 💜

05/01/2026

❤️🥰🔥

04/17/2026

A milestone worth celebrating 💙

The first publication using data from the FON Legacy Registry is officially published! This marks a significant milestone for our community, demonstrating how shared data can lead to shared knowledge and progress.

Thank you to everyone who helped make this possible.
🔗 https://www.svone.org/news/first-fon-legacy-data-registry-publication-releasednbsp

04/03/2026

Share your incredible milestones! 📣🧠🫀🫁

We’re collecting community highlights to celebrate during the Spring 2026 SV-ONE Virtual Learning Session! ⭐If you’re an individual with SVHD, family member, or care center team member, share your milestones and achievements since the last Learning Session—big or small, for an opportunity to be recognized during our upcoming Spring 2026 Virtual Learning Session!
Share your highlights: https://www.svone.org/voices-united-stories
Bonus: Want to share your highlight publicly, too? Drop a quick “win” in the comments! 🎉

04/03/2026

Blue & Green Spirit Week runs from April 4 through April 11! Join us for fun activities that celebrate the Donate Life message, honor donors, and give hope to those waiting for a second chance at life.

You can plan your week with the Blue & Green Spirit Week calendar, and then get ready to share your blue & green colors on (and send some photos to the Blue & Green Day Photo Contest when it opens on Friday, April 10 😉)! 💙💚 Learn more here: https://donatelife.net/how-you-can-help/national-observances-celebrations/blue-green-day/

04/03/2026

The deadline for summer camp is APRIL 8, 2026!

Don't miss out on the connections and fun!❤️🫶❤️

https://campodayin.org/

Final weeks to sign your child up for heart camp! Deadline to April 8th for all sessions of summer heart camp. Have questions? Ask our Camp Director Brooke! Brooke@campodayin.org

03/31/2026

Today is ! ❤🩺 We appreciate all of the doctors who care for babies, children, and adults with congenital heart defects and who give hope to families everywhere.

Do you or your child have a favorite doctor? Tell us about them in the comments below! 👇❤️‍🩹

03/29/2026

Breaking science:

We’re proud to share new findings from the Fontan Outcomes Network, representing over 1,100 individuals living with Fontan circulation.
This work reflects what we know to be true: life after the Fontan is complex, ongoing, and requires coordinated care across centers to improve outcomes over time.

Sisters by Heart is honored serve as a partner within this collaborative network and to have our President contribute as a co-author on this publication. This work helps ensure that lived experience can shape not only what is studied, but how it translates to individuals and families navigating this journey.

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.125.078152

03/29/2026

Strong work by strong folks! ❤️🫶❤️

We’re proud to share new findings from the Fontan Outcomes Network, representing over 1,100 individuals living with Fontan circulation.
This work reflects what we know to be true: life after the Fontan is complex, ongoing, and requires coordinated care across centers to improve outcomes over time.

Sisters by Heart is honored serve as a partner within this collaborative network and to have our President contribute as a co-author on this publication. This work helps ensure that lived experience can shape not only what is studied, but how it translates to individuals and families navigating this journey.

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.125.078152

03/28/2026

See some Lurie Heart Center favorites among these adorable baby pics 🥰