CTNNB1 Awareness
“Our daughter Vinaya is one of the rare ones.

Vinaya has CTNNB1 syndrome — a rare genetic condition that affects brain development, muscle tone, speech, mobility and so much more. Most people have never heard of it. We hadn’t either… until it became part of our story.

Rare doesn’t mean invisible.
Rare doesn’t mean less worthy.
Rare doesn’t mean hopeless.
It means stronger than most people will ever understand.

Vinaya works harder to do things many take for granted. Every sound, every movement, every milestone carries the weight of determination. What might seem small to others is monumental for her and we celebrate it all.

There are days filled with appointments, therapies, unknowns and always advocacy. There are moments of exhaustion and questions about the future. But there is also fierce love, resilience and a joy that shines brighter than any diagnosis.

Rare Disease Day isn’t just about statistics. It’s about children like Vinaya. It’s about families who fight quietly and relentlessly. It’s about raising awareness so that research grows, support expands and no family feels alone in their “rare.”

Vinaya is not defined by her diagnosis.
She is defined by her spirit.
Her courage.
Her light.

Because rare is powerful.”

Vinaya’s mom