"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…
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…
The Chan Zuckerberg Initiative and Citizen Health have announced a strategic investment and partnership to drive drug development and accelerate cures for rare diseases. Ctnnb1 Connect & Cure is proud to be part of this rare disease movement, with many of our members already using Citizen Health to share their de-identified data and contribute to critical…
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…