Forward Together
CTNNB1 Connect & Cure Newsletter
Dear Family, Friends, and Partners of CTNNB1 Connect & Cure,
Because of your support, we continue to advance research, empower families, and create hope for individuals living with CTNNB1 Syndrome around the world.
As we prepare for our annual conference and launch new opportunities to engage our community, we’re excited to share updates on research, fundraising, advocacy, and the incredible individuals who inspire our mission every day.
Thank you for being part of this journey. Together, we are moving Forward Together. 💛💙
Support Research & Families Today
🌟 CTNNB1 Conference 2026
🚨 Registration closes September 18, 2026, at 11:59 PM EDT.
This year’s conference will begin with two days of on-site research activities, including Natural History Study evaluations and biosample collections, followed by a full day of presentations from researchers and clinicians.
We’ll conclude with our annual Dinner & Dance Celebration as we come together under this year’s theme:
Forward Together
We look forward to bringing families, researchers, clinicians, and supporters together for a weekend of learning, connection, and hope as we continue building a brighter future for everyone affected by CTNNB1 Syndrome.
We can’t wait to welcome you. Reserve your spot before registration closes on September 18 and join us as we move Forward Together.
🔬 Research Update
There is so much reason for hope in the CTNNB1 community. Thanks to the dedication of families, researchers, clinicians, and supporters, momentum continues to grow as we advance our understanding of CTNNB1 Syndrome and move closer to future treatments.
The latest research updates will be shared at the CTNNB1 Connect & Cure Conference next month, where attendees will hear directly from leading researchers and clinicians about recent discoveries and what’s ahead for our community.
Together, we are moving Forward Together toward a brighter future for everyone living with CTNNB1 Syndrome. 💙
Dragonfly Spotlight: Meet Abby!
Abby is a bright, joyful, and determined three-year-old whose sweet smile and contagious laughter light up every room.
Abby lives with CTNNB1 Syndrome, autism, and other challenges affecting her communication, motor skills, and development. Over the past year, she has undergone several medical procedures while continuing to work hard in speech, occupational, physical, and ABA therapies.
Despite every challenge, Abby’s courage, resilience, and joyful spirit continue to inspire her family and everyone who knows her. She reminds us that every milestone is worth celebrating and every step forward matters.
🩷 Keep shining, Abby! We are cheering you on every step of the way and can’t wait to see all the amazing things you accomplish.
Every Dragonfly has a unique story, and Abby’s is a beautiful reminder of why we continue moving Forward Together.
💜 Community Impact
Mom Prom 2026 Raises $5,400 for CTNNB1 Connect & Cure
A heartfelt thank you to CTNNB1 mom Jennifer Hubert, who organized an unforgettable Mom Prom 2026 fundraiser in support of CTNNB1 Connect & Cure.
The event brought together 75 attendees for an evening of celebration, connection, and giving back. Thanks to generous donations from the venue, photographer, DJ, food, and beverage sponsors, more proceeds went directly toward supporting our mission.
Together, attendees raised an incredible $5,400 to advance research and support families affected by CTNNB1 Syndrome.
Jennifer has already scheduled Mom Prom 2027, and we can’t wait to see what next year brings!
Thank you, Jennifer, and everyone who helped make this special evening a success.
🎁 Coming Soon: CTNNB1 Connect & Cure Silent Auction
We’re excited to announce a brand-new way to support CTNNB1 Connect & Cure!
Our upcoming Silent Auction will feature a variety of exciting items, unique experiences, and special donations from supporters across our community, all benefiting CTNNB1 research, advocacy, and family programs.
📅 Bidding Opens: October 16, 2026
📅 Bidding Closes: November 1, 2026
For now, consider this your sneak peek! Be sure to follow our social media channels and watch your inbox for auction previews, featured items, and bidding details in the coming weeks.
Every bid will help move research forward and support families impacted by CTNNB1 Syndrome.
Stay tuned. We can’t wait to share what’s in store!
💙 Every Move Matters Challenge
Join our newest awareness campaign and help spread the word about CTNNB1 Syndrome!
How to Participate
1️⃣ Record a video showing your favorite movement.
2️⃣ Post it using #MoveForCTNNB1 and #EveryMoveMatters.
3️⃣ Nominate 3-5 friends or donate $10 or more to support CTNNB1 research.
Whether you’re walking, dancing, waving, clapping, rolling, or celebrating a milestone, every movement helps raise awareness and bring our community together.
Let’s fill social media with movement, milestones, smiles, and CTNNB1 awareness because every move matters, every milestone matters, and every person matters.
📈 Your Impact
Together, We’ve Raised
$214,739
Your support is helping fund critical research, empower families, raise awareness, and create new opportunities for individuals living with CTNNB1 Syndrome.
Thank you for believing in our mission and helping move us closer to better treatments and a brighter future.
With gratitude and hope,
The CTNNB1 Connect & Cure Team
CTNNB1 Connect and Cure is a 501(c)(3) nonprofit organization dedicated to finding treatment options and a cure for CTNNB1 Syndrome while improving the lives of our patients and community.