About Us

Every heart has a story.

At Soluna Heart Foundation, we believe no family should have to navigate a congenital heart defect diagnosis alone. Our foundation was created to provide hope, education, support, and community for children and families affected by congenital heart defects (CHDs).

Inspired by my daughter, Orinaya Soluna "Oreo," and the journey that forever changed our lives, Soluna Heart Foundation was established to turn personal experience into purpose. What began with one family's story has grown into a mission dedicated to serving heart families everywhere.

At the center of our work is BTM: Bigger Than Me. More than a phrase, BTM is a movement that reminds us this mission extends beyond any one person, one diagnosis, or one family. It represents the belief that awareness, advocacy, education, and compassion have the power to create lasting change when we come together as a community.

Through educational resources, community outreach, family support, and advocacy, we strive to ensure that every heart warrior and every family feels seen, supported, and empowered throughout their journey.

While our foundation was inspired by Oreo's story, our purpose reaches far beyond it. We stand beside every child living with a congenital heart defect, every parent searching for answers, every sibling offering love, every caregiver providing strength, and every individual committed to making a difference.

Because this has always been Bigger Than Me.

It's bigger than one family.

It's bigger than one diagnosis.

It's about creating hope, building community, and Holding Light for Every Heart. 💜

Meet the Founder

Every journey begins with a single moment that changes everything.

For me, that moment became the beginning of a purpose I never expected.

Walking through the highs and lows of caring for a child with a congenital heart defect opened my eyes to the strength of heart families, the importance of community, and the need for greater awareness and support. What started as a deeply personal journey soon became a calling to help others navigating similar paths.

That calling became this foundation.

My hope is that every family who visits this space finds encouragement, reliable resources, and the reassurance that they are never alone. Whether you're a parent, caregiver, healthcare professional, advocate, or supporter, you are now part of a community committed to making a difference.

Thank you for believing in this mission and for helping us hold light for every heart.

"Because this has always been Bigger Than Me." - Khaliah Johnson