The TBCK Foundation

The TBCK Foundation We are a non-profit dedicated to advancing research, advocacy, and education for TBCK Syndrome.

Happening in 30 Minutes! See Comments for details!
05/30/2026

Happening in 30 Minutes! See Comments for details!

🗓️ Europe Meets Europe📍 Digital TBCK Meeting for Parents & Doctors📅 May 30, 2026This is such a beautiful opportunity to ...
05/30/2026

🗓️ Europe Meets Europe
📍 Digital TBCK Meeting for Parents & Doctors
📅 May 30, 2026

This is such a beautiful opportunity to connect with other TBCK families, share experiences, learn from professionals, and remind one another that none of us are walking this journey alone. 💜

🔗 Zoom Invite Link:
Join the Zoom Meeting

📌 Meeting ID: 836 7500 7797
🔒 Passcode: 373077

We hope to see so many of our TBCK families there! 💜

✨ NEW YORK, here come the TBCK Warriors! 🇵🇷🩵This year, our warriors and their families will proudly walk in the National...
05/28/2026

✨ NEW YORK, here come the TBCK Warriors! 🇵🇷🩵

This year, our warriors and their families will proudly walk in the National Puerto Rican Day Parade to raise awareness for TBCK Syndrome, celebrate our culture, and show the world the strength of this incredible community.

Every step taken down 5th Avenue represents hope, love, advocacy, and the beautiful lives behind this ultra-rare diagnosis. We are so honored to be part of such an unforgettable day!

If you’ll be in NYC, come cheer on our warriors with us! 🇵🇷✨

Europe is coming together for TBCK. 💜🌍Join us on May 30, 2026 for Europe Meets Europe a digital TBCK meeting bringing to...
05/27/2026

Europe is coming together for TBCK. 💜🌍

Join us on May 30, 2026 for Europe Meets Europe a digital TBCK meeting bringing together families, doctors, and professionals to connect, learn, and support one another across the globe.

This meeting will include:
✨ TBCK syndrome overview & management
✨ Parent sharing sessions
✨ Professional collaboration
✨ Community connection and support

Colorado, here we come! ✈️🦓💙 TBCK Conference 2026📍Children’s Hospital of Colorado📅 July 17–19, 2026✨ Black Ties for Rare...
05/26/2026

Colorado, here we come! ✈️🦓

💙 TBCK Conference 2026
📍Children’s Hospital of Colorado
📅 July 17–19, 2026

✨ Black Ties for Rare Gala
📍Hyatt Regency Aurora-Denver
📅 July 19 | 5–10PM

Whether you attend the full conference or just join us for the gala, we would love to have you there! 🩷

A weekend dedicated to connection, awareness, and celebrating the strength of the rare disease community.

Our Research Director, Emily Durham, is currently representing the TBCK Foundation at the RAD (Rare Advocate Development...
05/21/2026

Our Research Director, Emily Durham, is currently representing the TBCK Foundation at the RAD (Rare Advocate Development) Brain Workshop in Boston, hosted by Global Genes and the Rare Epilepsy Network.

This conference brings together advocates, researchers, biotech leaders, and rare disease organizations from across the country, all focused on moving research and treatments forward.
Emily is there not only learning from experts in the field, but also making sure the voices of our TBCK families are heard in conversations about the future of rare disease research and medicine.

Some powerful takeaways from the workshop so far:
✨ “Just make a connection by being you.”
✨ “Everything seems impossible until it’s done.”
✨ “Precision gene editing doesn’t exist for the brain… yet.”

That “yet” gives us hope.

05/20/2026

We’re taking TBCK to New York 💙
This year, our warriors and their families will proudly walk in the National Puerto Rican Day Parade—bringing awareness, representation, and hope to one of the largest stages.
Every step taken is for our community. Every face seen is a reminder that TBCK deserves to be known.
Join us in celebrating our warriors and sharing their stories. 💫

Address

Chicago, IL

Telephone

+12699213455

Website

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