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:…
Dear CTNNB1 Community, We are beyond thrilled to share exciting news from a groundbreaking research project fully funded by CTNNB1 Connect and Cure — made possible by your fundraising efforts and generosity! Thanks to this incredible community, we were able to support a study led by Dr. Clement Chow at the University of Utah, where his…
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…
"Carter just turned 3 at the end of October. We were fortunate enough to receive his diagnosis very early, at 10 months old. Some of his favorite things are hot wheels, our family dog, and blowing kisses. " -Carter's mom
"Abigail 'Abby' is a sweet and happy 2 year old. She adores Ms. Rachel and reading books, especially Brown Bear and "Who Said". She loves Cocomelon, playing with cars and trucks, and many other sensory toys especially ones that play music. Believe it or not, she LOVES *NSYNC. They are quick to calm her down and…
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…
Any time is a good time to spread awareness for CTNNB1, but there are some special datesthat you should be familiar with: ● February 28 (or 29) - Rare Disease Day● April 25 - DNA Day● July - Disability Pride Month● July 25 - CTNNB1 Awareness Day● Tuesday after Thanksgiving - Giving Tuesday We suggest reaching…