ABOUT ACTION

Our Patients

We are here to guide you on every step of your heart journey.

OUR PATIENTS INSPIRE ACTION.

All united through the heart, ACTION’s global community is ready to help. When we share our stories, information, and resources, we can increase awareness, support, and funding for pediatric heart failure.

Ready to start your heart success journey?

Heart failure can be complicated and frightening – but it doesn’t need to be. Discover treatment options, understand your diagnosis, and learn about new therapy innovations by visiting My ACTION Education.

This site is free for patients, families, and caregivers. Email us with any questions.

Join FACT (Families in ACTION)

FACT is a diverse group of patients, parents, and caregivers whose perspectives and experiences guide ACTION’s quality improvement projects. Real-world data and lived experiences drive how ACTION chooses its projects and initiatives.

Fill out and send in this form to nominate yourself or someone you know to join FACT!

I wanted to be involved with ACTION as a parent to help other people understand what this journey is about and that they're not alone.

Kathleen Y.

Parent

ACTION is what's possible when heart failure teams collaborate with each other, patients and families, and the community. That progress and transparency make it possible not only to save lives but to encourage all pediatric heart care in ways we never thought possible. I very much look forward to the future being built for our heart kids. A brighter future.

Melissa M.

Parent

It really makes me happy to see that ACTION has created better options for families that have long waits for transplants.

Joseph H.

Parent

We learn, grow, and succeed by listening to others.

Open your heart by exploring our patient, family, and member stories.
Raylan
Patient StoriesStories

A New Heart, A New Community: Raylan’s Story

From the moment Raylan was born, he fought for his life. Born with cardiomyopathy, Raylan was placed on the transplant list at seven weeks old. His parents, Bonnie and Craig, could only sit and wait for answers about their baby. After agonizing challenges, numerous roadblocks, and more than a few long nights, Bonnie and Craig brought their baby home and found a new community along the way.

Read More >>
Juliana is happy and healthy after her heart transplant.
Patient StoriesStories

Finding Heart — Juliana’s Story

At 11 days old, Juliana waited for a new heart while her mother, Riki, fought breast cancer. Together as mother and daughter, they faced unexpected challenges, braved mounting treatments, endured long waits and recovery. Now, Riki shares their story in thanks to the community of support they found along the way.

Read More >>
Patient StoriesStories

Finding Light in the Dark: Brynn’s Story

One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.

Read More >>

<<  See all stories  >>

Support Organizations

Whether it’s in-person or on virtual platforms, support groups are a great place to connect and share your heart failure journey experiences. See below for organizations and communities that may be helpful or talk to your care team about local support groups.*

Know something we don’t?

Do have a suggestion for other resources? Or is there a resource that has helped you?

Send us a message and let us know so we can share it with our community!

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