Our Story

In 2017, CTNNB1 Syndrome Awareness Worldwide (CSAW) was founded as the first non-profit to address CTNNB1 Syndrome, with just 30 known cases globally. CSAW aimed to raise awareness, provide education, and support individuals with CTNNB1 Syndrome. They established key initiatives, including the creation of a website, the adoption of the dragonfly symbol, the declaration of the awareness day (July 25), and regular communication as a community, focusing on connecting families and increasing awareness. As awareness grew, Advancing CTNNB1 Cures & Treatments (ACCT) was formed in 2019, focusing on research. ACCT formed key relationships with researcher Drs. Wendy Chung and Michelle Jacob and helped fund the creation of the CTNNB1 mouse model at Tufts University. Together, CSAW and ACCT organized online conferences, leading to a face-to-face gathering in 2022. Recognizing shared goals, we merged in 2023 and have since adopted the name CTNNB1 Connect and Cure
(CCC), aiming to enhance our impact while streamlining operations.

Who We Are

Our team is made up of families, caregivers, researchers, medical professionals, advocates, and volunteers working together to advance understanding and accelerate the search for treatments and a cure for CTNNB1 Syndrome.

Because CTNNB1 Syndrome is rare, every connection matters. We bring people together, share knowledge and experiences, support research, raise critical funding, and help build a stronger network for families navigating life with CTNNB1.

We believe that no family should have to face a rare disease alone—and that the path to a cure begins with collaboration. By connecting families with researchers, supporting scientific discovery, increasing awareness, and creating opportunities for others to make an impact, we are working to turn hope into progress. There are no salaries giving to our board, and we are an accredited 501(C)3 organization.

Our Impact

To date, our organization has invested more than $1,000,000 towards CTNNB1 research. See how our mission has been put into action through innovative techniques that build our knowledge of the CTNNB1 gene and the path to a cure. Current work includes small-molecule drug development, drug repurposing, and mRNA research. In addition, through collaboration we have established a Patient Registry and Natural History Study, created a CTNNB1 mouse model and colony, and supported the progression toward testing potential drug treatments.

Fulfillment and Shipping

Winning items can/will be shipped across the US. An added donation at checkout for shipping is appreciated, but not required. Tip amount at checkout is for Givebutter and can be changed to zero (0) - CTNNB1 Connect and Cure (CCC) does not receive any of the tip amount, however, the donation CCC does get in full.

ALL SUCCESSFUL BIDDERS - you will also receive a certificate for a 2 night stay in either Las Vegas OR Orlando (for a refundable $100 deposit). While there you have the option to listen to a 15-minute talk about Sharelife Vacations Guest Membership, after listening to the talk you will receive a 2nd voucher for 2 more nights at over 30 destinations and a $100 Dining Advantage Card. After your 2nd trip, your $100 deposit will be refunded. That's 4 nights and $100 dining card in exchange for a 15 minute talk. If you forego the talk, that is still a 2 night stay in Orlando or Las Vegas for only $100.

Bid generously knowing you are making a difference in all the kiddos lives that are diagnosed with CTNNB1 Syndrome. Together we can make a difference and pave the path forward on rare disease.💙💛

CTNNB1 Connect & Cure Nationwide Silent Auction 2026