Ashley Swift, Mom to Evelyn and CTNNB1 Connect and Cure Chief Communications Officer, shares their family's journey with tethered spinal cord.When our daughter, Evelyn, was diagnosed with CTNNB1 Syndrome at 14 months old, we knew there would be many unknowns ahead. Like many rare disease parents, we found ourselves learning from both our medical team and…
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure, Moving Research Forward, Together As we celebrate CTNNB1 Awareness Month, we're reminded that every family, every fundraiser, every research study, and every partnership moves us closer to better treatments and ultimately a cure. Thank you for being part of this incredible community. đź’™ Countdown to CTNNB1…
CTNNB1 Connect & Cure is proud to announce a research grant award to Dr. Damon Page at Seattle Children’s and the University of Washington, funded in partnership with CURE Epilepsy. This project was selected as the recipient of the 2025 Rare Epilepsy Partnership Award and will be supported through a $50,000 matching grant. This study represents…
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…
Thanks to the support of our community, CTNNB1 Connect and Cure has awarded an additional $50,000 to Dr. Michele Jacob’s lab at Tufts University to support six more months of research advancing a potential therapy for CTNNB1 syndrome. This funding supports our drug discovery collaboration led by Dr. Michele Jacob at Tufts University, together with scientists…
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:…