Written by Emily Amerson, President of CTNNB1 Connect & Cure Following her participation in the CTNNB1 Foundation Conference in Barcelona and the CTNNB1 Italia Conference in Genoa, Emily shares her reflections on the relationships, collaborations, and connections that continue to drive progress for the global CTNNB1 community.Last week, I had the privilege of traveling to Europe…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure, As we step into 2026, we’re carrying forward real momentum built by you. This last quarter reflects that progress across research, community, and the systems that support this work, made possible by you. In Q1, you helped: Advance multiple therapeutic strategies in parallel Move drug repurposing…
As we reflect on 2025, one thing is clear: our community is driving extraordinary momentum for CTNNB1 research, awareness, and family support. Every milestone in this year’s Impact Report is a direct result of a shared belief—that our children deserve answers, hope, and a brighter future. Read the full report HERE Research Progress & Scientific Breakthroughs Over…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,As we reflect on 2025, one thing is clear: our community is driving extraordinary momentum for CTNNB1 research, awareness, and family support. Every milestone in this year’s Impact Report is a direct result of your belief that our children deserve answers, hope, and a brighter future.Read the full report…
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…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,Because today is Thanksgiving, we find ourselves reflecting on the incredible community that surrounds and strengthens our mission. This season is a reminder of how much we have to be grateful for—and at the very top of that list is you.To our donors, families, researchers, clinicians, advocates, and volunteers:…
As of October 2025, CTNNB1 Syndrome has been assigned its own ICD-10 code. This marks a significant step forward in bringing visibility to this rare condition within the healthcare system. Having a dedicated code allows for more precise medical documentation, improves access to services and insurance coverage, strengthens the foundation for clinical trials, and enhances the…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure, In just three days — on July 25th — we’ll be walking, running, and giving for CTNNB1 Awareness Day.CTNNB1 Syndrome is a rare genetic disorder that affects mobility, speech, vision, behavior, intellectual development and independence. There is no cure yet — but there is incredible hope, and a growing global community…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure, We’ve had so much to celebrate these past few months, and we’re excited to share all the momentum with YOU—our amazing community of donors, families, researchers, and advocates. Dr. Jeff Coller’s Groundbreaking mRNA Research at Johns Hopkins University Last year, we participated in the Million Dollar Bike Ride and raised…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure, Today, February 28th, is Rare Disease Day, a day dedicated to raising awareness and offering support to those living with rare conditions. On this special day, we reflect on the experiences of individuals and families impacted by rare diseases, including CTNNB1 Syndrome.CTNNB1 Syndrome is a rare genetic…