WALTHAM, MA | September 8, 2026 | CTNNB1 Connect & Cure will host its 2026 Annual Conference October 8 through 10, 2026, in Waltham, Massachusetts, just outside Boston. With the theme Forward Together, the three-day gathering will bring together families affected by CTNNB1 syndrome, researchers, clinicians, and advocates for a weekend focused on research, education, connection, and community.
Forward Together reflects the spirit of the CTNNB1 community and its shared commitment to creating a better future for individuals and families living with CTNNB1 syndrome. By bringing families, researchers, clinicians, and advocates together, the conference creates opportunities to share knowledge, strengthen relationships, and work toward meaningful treatments.
At the heart of the conference is a simple but powerful goal: to move CTNNB1 research forward by working together.
Throughout the three-day gathering, families will have opportunities to participate in research, connect with other families, meet with experts, and learn about the latest developments in CTNNB1 research and the treatment landscape.
A Three-Day Program Focused on Research, Education, and Community
Thursday, October 8 and Friday, October 9 will focus on research and family connection. Families will have the opportunity to participate in on-site research opportunities including: clinical assessments for the CTNNB1 Natural History Study in partnership with Boston Children’s Hospital, biosample collection for the CTNNB1 biorepository in partnership with COMBINEDBrain, and speech assessments for a study in partnership with Geisinger . Attendees can also take part in community activities, visit information stations, and complete conference registration.
Saturday, October 10 will feature the main conference program. Following breakfast for all attendees, participants will hear from experts about the current clinical landscape and treatment pipeline. The day will include Q&A sessions, panel discussions, and a caregiver workshop.
Family Resource Rooms will be available during presentations as a welcoming space where children and families can play, participate in group activities, or simply take a break and reset. With additional caring hands and eyes available to help, these rooms are designed to give parents greater peace of mind and mental freedom to focus, engage, and get the most out of the sessions. Lunch will be provided for all attendees. The conference will conclude with the community’s Signature Dinner & Dance Party.
Forward Together
The conference is about more than sharing research. It is about bringing the CTNNB1 community together and creating a space where families, researchers, clinicians, and advocates can learn from one another.
“Our conference is about coming together with a shared purpose,” said Ashley Swift, Chief Communications Officer at CTNNB1 Connect & Cure. “Forward Together represents who we are as a community. Families bring their lived experiences, researchers bring their discoveries, clinicians bring their expertise, and advocates help create the connections that bring us all together. When we work together, we can create momentum and move closer to treatments for CTNNB1 syndrome.”
For families, the conference offers a chance to meet others who understand their experiences, connect directly with researchers and clinical experts, and have a voice in shaping the future of CTNNB1 research.
For researchers and clinicians, the conference provides an opportunity to share emerging findings, hear directly from families, and build relationships that can help move promising research closer to real-world impact.
Together, the CTNNB1 community is moving forward with purpose, hope, and determination.
Forward Together.
2026 CTNNB1 Connect & Cure Conference
Dates: October 8 through 10, 2026
Location: Waltham, Massachusetts
Theme: Forward Together
Conference Information and Registration
About CTNNB1 Connect & Cure
CTNNB1 Connect & Cure is a nonprofit organization dedicated to finding treatment options and a cure for CTNNB1 syndrome while improving the lives of patients and the CTNNB1 community.
Our vision is to create a world where every family affected by CTNNB1 syndrome has access to safe and effective treatments and a supportive community. Through research, education, advocacy, and connection, CTNNB1 Connect & Cure works to bring families, researchers, clinicians, and advocates together to move closer to that vision.
Together, we are working to turn hope into progress and progress into meaningful change for the CTNNB1 community.
Learn more about CTNNB1 Connect & Cure
Media Contact
Ashley Swift
Chief Communications Officer
CTNNB1 Connect & Cure
ashley.swift@curectnnb1.org
Program details are subject to change. Details for the Friday evening community gathering will be announced as plans are finalized