Sisters by Heart

Sisters by Heart Sisters by Heart is dedicated to support and advocacy for the single ventricle community. Do you know someone whose child recently received a diagnosis of HLHS?
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Nominate them to receive one of our specially designed care packages. Email us, either through Facebook or at our email address [email protected] with the following information: mother's name, address, due date or birth date, hospital where the child will receive treatment and the child's complete diagnosis.

Today we honor the men and women who gave their lives for our country and our freedom. 🇺🇸Behind every flag is a story, a...
05/25/2026

Today we honor the men and women who gave their lives for our country and our freedom. 🇺🇸
Behind every flag is a story, a family, a sacrifice, and a hero who will never be forgotten.
As we spend time with loved ones today, may we also take a moment to remember those who gave everything so we could have the freedoms we enjoy every day. ❤️🤍💙

We are thrilled to announce our newest board member, Kate Doherty-Schmeck as the Director of Development and Partnership...
05/18/2026

We are thrilled to announce our newest board member, Kate Doherty-Schmeck as the Director of Development and Partnerships.
Kate joins Sisters by Heart with experience in the congenital heart disease community shaped by both professional work and personal connection. At Boston Children’s Hospital, she supported global efforts to strengthen congenital heart care programs and later worked with patient and family organizations around the world to expand partnerships and support for people impacted by childhood-onset heart conditions. She has also represented the congenital heart community in global health discussions, including speaking at the United Nations about the needs of people living with CHD. As a family member to many individuals living with CHD, Kate understands firsthand the lifelong impact congenital heart diseases have on families. Based in CT, she is a proud mom of two and dog mom and is grateful to continue supporting and learning from the Sisters by Heart community.
We are so excited to have her!

05/18/2026

Reminder!!

Some mothers remember the goodnight kisses they once gave.Some whisper their children’s names to the sky.Some are still ...
05/03/2026

Some mothers remember the goodnight kisses they once gave.

Some whisper their children’s names to the sky.

Some are still waiting for a child they’ll never get to hold.

Every version is real. Every version is motherhood.

You are still a mother. Always.

BereavedMothersDay

We’re proud to share a new American Heart Association scientific statement focused on education for families and patient...
05/01/2026

We’re proud to share a new American Heart Association scientific statement focused on education for families and patients living with congenital heart disease ( ).
This work reflects what we know to be true: learning doesn’t happen just once at diagnosis: it’s an ongoing, evolving process that families rely on throughout every stage of the journey.

Sisters by Heart is honored to have one of our Board of Directors members, Allison McCoy, contribute as a co-author on this publication. This work helps ensure that the lived experiences of heart families shape not only what is studied, but how education and support are delivered in real life.

At Sisters by Heart, we’ve always believed that informed, supported families are powerful. We’re committed to translating complex medical information into real, understandable language and creating spaces where families can learn from each other, because no one should have to navigate this journey alone ❤️ https://www.ahajournals.org/doi/10.1161/JAHA.125.046623

A new month means new reasons to celebrate! 🎉 We wanted to take a moment to recognize all of our Heart Warriors with May...
05/01/2026

A new month means new reasons to celebrate! 🎉 We wanted to take a moment to recognize all of our Heart Warriors with May heartiversaries!

Not familiar with this term? A heartiversary is the anniversary of an open heart surgery. It’s a day to celebrate, remember and reflect. A significant day for Heart Warriors and their families.

Being a single ventricle community, we know many have undergone multiple OHS. So how do you choose which is a heartiversary? Well it can be the anniversary of the very first surgery or every surgery can have its own! Each heart family celebrates and honors these dates in their own way.

Do you have a May heartiversary? How do you celebrate or recognize it? Share in the comments! đź«€

We’re proud to share new findings from the Fontan Outcomes Network, representing over 1,100 individuals living with Font...
03/28/2026

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

Part two of our webinar series is tomorrow!! You can register now!! If you can’t make it this will be recorded and sent ...
03/01/2026

Part two of our webinar series is tomorrow!! You can register now!!

If you can’t make it this will be recorded and sent out to those who registered.

This webinar is designed to help individuals living with single ventricle circulation and their families better understand the Fontan circulation , potential long-term complications, and how care needs can evolve over time. Participants will learn about advanced therapy options that may be considered as health needs change, including ventricular assist devices and transplant, to support informed, confident conversations with their healthcare teams. Through expert clinical discussion and patient and family panels, the webinar will also offer practical guidance on communication, self-monitoring, and proactive care management to support daily quality of life and longer-term planning.

https://docs.google.com/forms/d/e/1FAIpQLScw01y7Ly1xfusrbidQj-sY3bQ_bynp_2Qa_qp-N1QabGXVTQ/viewform

Single ventricle heart conditions are rare, complex, and lifelong. On Rare Disease Day, we raise our voices for the stro...
02/28/2026

Single ventricle heart conditions are rare, complex, and lifelong. On Rare Disease Day, we raise our voices for the strongest hearts we know.

If you are in the Cincinnati area and happen to see our billboard, we would love it if you could take a photo with it an...
02/20/2026

If you are in the Cincinnati area and happen to see our billboard, we would love it if you could take a photo with it and tag us when you share it.

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PO BOX 599
Valley Center, CA
92082

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