In medicine, breakthroughs are often credited to laboratories, surgeons, and scientific discovery. But in the world of congenital heart disease (CHD), there is another powerful force behind progress: heart families. More than 2 million families in the United States are living with congenital heart disease today.
For generations, families of children born with CHD have faced extraordinary challenges – complex surgeries, long hospital stays, uncertain futures, and lifelong care. Yet from those challenges has emerged something remarkable: a community that refuses to accept limits on what the future of heart care can be.
Heart families have not only navigated the hardest moments of CHD. They have helped move the entire field forward.
Courage That Changed the Course of Care
Many of the advances that allow children with congenital heart disease to survive and grow into adulthood today were made possible because families were willing to take part in new procedures, research studies, and emerging treatments.
Parents sat beside hospital beds during surgeries that had never been attempted before. Families agreed to participate in studies that helped doctors better understand complex heart conditions. Patients returned year after year for follow-up visits that provided the long-term data researchers needed.
These decisions were never easy. But they helped create the knowledge that physicians and scientists rely on today.
Because of families who said yes, the field of congenital heart care has continued to evolve.
The HeartWorks Community
At HeartWorks, this spirit of collaboration is central to everything we do. We believe progress happens when people come together with a shared purpose. That is why HeartWorks operates as a “Team of Teams”– bringing together scientists, clinicians, engineers, innovators, and families.
Heart families are not simply supporters of this work. They are essential partners in it. Their stories inspire new research questions. Their experiences help guide priorities. Their willingness to engage in studies, share insights, and build community helps accelerate discovery.
Initiatives like The Co-op @ HeartWorks reflect this belief: that the lived experiences of patients and families can help shape the next generation of research and therapies.
Stories That Inspire Discovery
Every child born with congenital heart disease carries a story of resilience. Every family carries lessons learned through courage, uncertainty, and hope.
For researchers and clinicians, these stories provide a powerful reminder of why the work matters. Behind every innovation in CHD care is a deeper goal: helping children live longer, stronger lives.
Heart families give this work its urgency and its purpose. If you would like to share your story, please connect with erin@webuildhearts.org.
A Legacy of Commitment
The progress seen in congenital heart disease over the past several decades is extraordinary. More children survive. More adults with CHD are thriving. New areas of research are opening doors that once seemed impossible.
This progress did not happen by accident. It happened because families believed the future could be better and worked tirelessly to help make that future possible.
Their courage has shaped the past. Their commitment continues to shape the present. And their partnership will help shape the future of congenital heart disease research and care.
Because when heart families and the scientific community move forward together, the possibilities for the next generation become limitless.
Join the Families Moving the Field Forward
The progress seen in congenital heart disease over the past several decades did not happen alone. It happened because families stepped forward – sharing their stories, supporting research, raising awareness, and building communities determined to create a better future.
Today, hundreds of families are part of the HeartWorks community, helping move the field of congenital heart disease forward.
Many of these families have created their own HeartWorks teams – bringing together friends, relatives, coworkers, and supporters who want to make a difference. These teams host community events, organize fundraisers, raise awareness, and connect others to the mission of improving outcomes for people living with CHD. We love partnering with families during their events – anything from sending stickers and brochures for swag bags to showing up with our food truck!
If congenital heart disease has touched your family, we invite you to become part of this growing movement.
Create a HeartWorks Team and join the families helping accelerate innovation, support research, and build a future where every heart has more possibilities. Please email erin@webuildhearts.org for more information or visit: https://heartworksinc.org/families/team-page
Together, we can continue turning courage into progress for the next generation of heart warriors.
FAQs
How do families help advance congenital heart disease research?
Families help by sharing their experiences, participating in studies, supporting research organizations, and advocating for increased awareness and funding.
Why is the CHD community important for research?
The lived experiences of patients and families help researchers understand long-term outcomes and design better studies.
How can families get involved in HeartWorks research?
Families can participate in The Co-op at HeartWorks. This will help researchers create more informed clinical trials + alert families when research opportunities are available for them.
