• Post category:Newsletter

Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,

Today, on Rare Disease Day, we honor the strength of our families and reaffirm the urgency of our mission.

CTNNB1 Syndrome is rare — but for the children and families living with it, the challenges are constant. Developmental delays. Complex medical needs. Uncertainty about the future. What this diagnosis should never bring is isolation or a loss of hope.

Because of you, it doesn’t.

Make Your Rare Disease Day Gift Now

Through CTNNB1 Connect & Cure, families have community. They have trusted resources. And most importantly, they have research actively moving forward.

Your generosity fuels:

  • Critical research advancing potential treatments

  • Natural history studies that deepen scientific understanding

  • Family support programs so no one walks this journey alone

  • Advocacy efforts that raise awareness and accelerate progress

Donate Now to Accelerate Research

Rare is not insignificant.

Every child matters. Every breakthrough matters. Every act of generosity matters.

We are closer today than we were yesterday because of supporters like you. But there is still momentum to build — and families are still waiting.

If you feel inspired to make a Rare Disease Day gift, your support will directly accelerate research and strengthen the path toward treatments and a cure.

Donate today and help move research forward

Thank you for believing in this mission and for standing with our community.

Together, we will connect. Together, we will cure.

 

With gratitude and hope,

The CTNNB1 Connect & Cure Team