The TBCK Foundation

06/07/2026

06/06/2026

✨ 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! 🇵🇷✨

06/03/2026

❄️ When you purchase a personalized snowflake, your name (or the name of someone you love) will be displayed on our conference wall and at our Black Ties for Rare Disease Gala. Your personalized message will join with hundreds of others in a stunning visual tribute to the rare disease community. Together, we aren’t just snowflakes — we start an avalanche!
Every dollar helps us make sure no rare family feels alone.
Choose your snowflake tier and add your name, or honor someone special to grow an avalanche of care.
$100 — Gold Snowflake | Premier recognition + name on display + listed in the event program
$75 — Blue Snowflake | Name on display + listed in the event program
$50 — Pink Snowflake | Name on display
$25 — Teal Snowflake | Name on display
Every snowflake is rare. Every gift matters. Let’s create an avalanche.
https://tbckfoundation-bloom.kindful.com/?campaign=1416075

06/03/2026

❄️ One snowflake at a time, we’re creating an Avalanche of Care for the rare disease community. Honor someone rare and help us fill our wall with love, hope, and support. 💙🩷

https://tbckfoundation-bloom.kindful.com/?campaign=1416075

06/02/2026

A powerful weekend of connection, learning, and hope for the TBCK community 💜🌍

Families, clinicians, and researchers from around the world came together to share experiences, discuss research, and continue pushing toward a brighter future for everyone affected by TBCK syndrome.

Together, we are stronger.

06/01/2026

🇵🇷✨ NEW YORK, HERE COME THE TBCK WARRIORS! ✨🇵🇷

This June, our TBCK families are taking over the streets of New York City for the National Puerto Rican Day Parade! ❤️💙

What started as a rare diagnosis became a powerful community filled with strength, love, and hope. Now our warriors are showing the world that rare is powerful. 💪🦓

Join us as we celebrate our culture, raise awareness for TBCK Syndrome, and honor every warrior and family walking this journey together. From Texas to New York… TBCK is showing up BIG this year! 🗽✨

📍5th Avenue, New York City
📅 Sunday, June 14, 2026

If you see us at the parade, cheer loud for our warriors! 🇵🇷🦓

05/30/2026

Happening in 30 Minutes! See Comments for details!

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! 💜

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