Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,
Moving Research Forward, Together
As we celebrate CTNNB1 Awareness Month, we’re reminded that every family, every fundraiser, every research study, and every partnership moves us closer to better treatments and ultimately a cure.
Thank you for being part of this incredible community.
💙 Countdown to CTNNB1 Awareness Day
CTNNB1 Awareness Day is just around the corner!
Join families around the world on July 25 as we raise awareness for CTNNB1 Syndrome and celebrate our community.
Ready to participate? Check out our CTNNB1 Awareness Day Toolkit for ways to get involved, including:
- Adding our Awareness Day profile frame
- Wearing blue and yellow
- Sharing your family’s story
- Spreading awareness on social media
- Starting a Dragonfly fundraiser or donating toward our $25,000 July fundraising goal
Together, we can make this our biggest CTNNB1 Awareness Day yet!
🔬 Research Update
CTNNB1 Connect & Cure Announces Co-Funded Research Grant Award to Dr. Damon Page
CTNNB1 Connect & Cure, in partnership with CURE Epilepsy, awarded a $50,000 matching grant to Dr. Damon Page at Seattle Children’s and the University of Washington to advance a first-of-its-kind study linking brain activity in CTNNB1 mouse models with individuals living with CTNNB1 Syndrome. This groundbreaking research will identify disease mechanisms, uncover potential therapeutic targets, and strengthen the path from laboratory discoveries to future clinical trials and treatments.
🧬 Research Pipeline Update
In addition to our newly announced research grant, several important research programs continue moving forward across our therapeutic pipeline.
- Small-molecule therapy development with Tufts University, NCATS (NIH), and the Broad Institute
- mRNA booster research led by Dr. Jeffrey Coller at Johns Hopkins University
- Drug repurposing efforts guided by our Medical & Scientific Advisory Board and clinical pharmacology experts
Research takes time, but progress is happening. Each step brings us closer to treatments for CTNNB1 Syndrome.
Help us continue moving this work forward. 💙
🌎 Global Connections Driving Progress
This past month, CTNNB1 Connect & Cure President Emily Amerson represented our community at both the International CTNNB1 Syndrome Conference in Barcelona and the Italian CTNNB1 Conference.
Emily shared how collaboration between families, researchers, clinicians, and industry partners is accelerating research, improving clinical trial readiness, and strengthening our global community.
📅 2026 CTNNB1 Family & Research Conference
We are looking forward to bringing our community together again in Boston for the annual CTNNB1 Family & Research Conference.
The conference begins with two days of on-site research activities, including clinical evaluations for the CTNNB1 Natural History Study, biosample collection, and other research opportunities. These sessions will be followed by a full day of presentations highlighting the latest advances in CTNNB1 research, clinical trials, and family resources. We’ll conclude with our annual dinner and dance celebration.
Early Bird Registration is open, and we can’t wait to see you in October!
💙 Conference Sponsorship Opportunities
We’re currently seeking conference sponsors to help make this event possible.
Sponsorship opportunities range from $500 to $25,000, and every level of support helps advance research and strengthen our community.
💰 Financial Update
Thanks to your generosity, CTNNB1 Connect & Cure continues investing directly into research while connecting families around the world.
Year-to-date donations: $134,305.85
💛 Dragonfly Spotlight
Meet Liam!
Diagnosed with CTNNB1 Syndrome at just 15 months old, Liam continues to inspire everyone around him with his joyful spirit, determination, and contagious smile.
His mom says Liam has taught her patience, unconditional love, understanding, and empathy.
🌱 Organizational Growth
Luke Dreckman is our new Co-Director of Fundraising!
We’re excited to have Luke join our leadership team as we continue expanding our fundraising efforts.
Thank You
Whether you’ve donated, volunteered, participated in research, attended an event, or simply shared one of our posts, you’re helping change the future for everyone living with CTNNB1 Syndrome.
Together, we’re turning hope into progress—and progress into a brighter future for every individual living with CTNNB1 Syndrome.
With gratitude and hope,
The CTNNB1 Connect & Cure Team
