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…
What is a Proclamation? A proclamation is an official document issued by a government official to commemorate a specific time period (ex. day, week, or month) with the goal of honoring and celebrating events or increasing awareness of noteworthy issues among citizens. How to Request a Proclamation Contact the State or Local Government Office - Governors,…
A recent study published in Molecular Therapy – Nucleic Acids introduces a promising therapeutic approach for CTNNB1 Syndrome, a rare genetic disorder characterized by severe intellectual disabilities, motor delays, and other neurological impairments. The research focuses on a novel gene therapy technique that aims to restore normal function of the CTNNB1 gene. In this study, researchers utilized advanced…
Last week, our president, Emily Amerson, had the incredible opportunity to attend the Rare Advocate Development (RAD) Workshop in New York City! This impactful event brought together patient advocates, researchers, and industry leaders, all working toward a common goal—driving progress for the rare disease community. The workshop focused on empowering advocates with the tools and knowledge…