The CTNNB1 Connect & Cure 2025 Conference, held July 10–12 at Embassy Suites Waltham just outside Boston, brought together individuals with CTNNB1 syndrome, their families, clinicians, researchers, and industry representatives for an immersive and supportive multi-day gathering. Attendees also had the opportunity to participate in on-site assessments—such as natural history, EEG, a speech study, and biospecimen collection—without leaving the hotel, alongside creative child-focused activities including art therapy, music sessions, and sibling workshops.
Click here for the recorded presentations, photos, and more.
2023
We hosted our first in-person conference in June 2023 in Madison, New Jersey. Families, researchers, clinicians and other experts gathered for an unforgettable weekend of community and information sharing. Families also participated in clinical evaluations for the natural history study and sample collection for the biorepository.
2021
Our second CTNNB1 Conference took place online in July 2021. Dozens of families from around the world joined to hear exciting research updates from Dr. Wendy Chung and Dr. Michele Jacob.
2020
On July 25, 2020, we hosted the very first CTNNB1 International Research Conference. Over 80 families attended this virtual event. Presenting speakers included Wendy Chung, MD PhD from Columbia University and Michele Jacob, PhD from Tufts University School of Medicine. Researchers from the following institutions were also in attendance: University of Washington, University of Hong Kong, Adelaide Medical School in Australia, Mt. Sinai in NYC, CHOP in Philadelphia, Johns Hopkins and Children’s Hospital of New York Presbyterian, Columbia University.