May 2026 Newsletter

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…

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March 2026 Newsletter

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…

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February 2026 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…

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November 2025 Newsletter

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:…

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July 2025 Newsletter

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…

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May 2025 Newsletter

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…

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February 2025 Newsletter

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…

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January 2025 Newsletter

Celebrating a Year of Progress, Connection, and HopeThanks to your unwavering support, CTNNB1 Connect and Cure had a monumental year. From advancing research to empowering families, your contributions have made a tangible difference.We’re excited to share our 2024 Impact Report, highlighting:Key milestones and achievementsImpactful initiatives in the areas of community, research, and education/awarenessFinancial transparency and funding breakdownGoals for the…

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October 2024 Newsletter

Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,As we step into the fourth quarter, we want to take a moment to update you on our progress, share some exciting news, and express our heartfelt gratitude for your unwavering support in our mission to find treatments and a cure for CTNNB1 syndrome.CTNNB1 SMALL MOLECULE DRUG DEVELOPMENT RECEIVES SUPPORT…

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July 2024 Newsletter

Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,As we enter the 3rd quarter of 2024, we want to take a moment to provide some exciting updates as well as our heartfelt gratitude for your support in our mission to find treatments and a cure for CTNNB1 syndrome. July 25th is CTNNB1 Awareness Day!Awareness is SO important for rare diseases…

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