The TBCK Foundation

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

โœจ NEW YORK, here come the TBCK Warriors! ๐Ÿ‡ต๐Ÿ‡ท๐ŸฉตThis year, our warriors and their families will proudly walk in the National...
06/06/2026

โœจ NEW YORK, here come the TBCK Warriors! ๐Ÿ‡ต๐Ÿ‡ท๐Ÿฉต

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 youโ€™ll be in NYC, come cheer on our warriors with us! ๐Ÿ‡ต๐Ÿ‡ทโœจ

โ„๏ธ When you purchase a personalized snowflake, your name (or the name of someone you love) will be displayed on our conf...
06/03/2026

โ„๏ธ 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 arenโ€™t just snowflakes โ€” 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 โ€” Gold Snowflake | Premier recognition + name on display + listed in the event program
$75 โ€” Blue Snowflake | Name on display + listed in the event program
$50 โ€” Pink Snowflake | Name on display
$25 โ€” Teal Snowflake | Name on display
Every snowflake is rare. Every gift matters. Letโ€™s create an avalanche.
https://tbckfoundation-bloom.kindful.com/?campaign=1416075

A powerful weekend of connection, learning, and hope for the TBCK community ๐Ÿ’œ๐ŸŒFamilies, clinicians, and researchers from...
06/02/2026

A powerful weekend of connection, learning, and hope for the TBCK community ๐Ÿ’œ๐ŸŒ

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.

๐Ÿ‡ต๐Ÿ‡ทโœจ NEW YORK, HERE COME THE TBCK WARRIORS! โœจ๐Ÿ‡ต๐Ÿ‡ทThis June, our TBCK families are taking over the streets of New York City ...
06/01/2026

๐Ÿ‡ต๐Ÿ‡ทโœจ NEW YORK, HERE COME THE TBCK WARRIORS! โœจ๐Ÿ‡ต๐Ÿ‡ท

This June, our TBCK families are taking over the streets of New York City for the National Puerto Rican Day Parade! โค๏ธ๐Ÿ’™

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. ๐Ÿ’ช๐Ÿฆ“

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 Yorkโ€ฆ TBCK is showing up BIG this year! ๐Ÿ—ฝโœจ

๐Ÿ“5th Avenue, New York City
๐Ÿ“… Sunday, June 14, 2026

If you see us at the parade, cheer loud for our warriors! ๐Ÿ‡ต๐Ÿ‡ท๐Ÿฆ“

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

Happening in 30 Minutes! See Comments for details!

๐Ÿ—“๏ธ Europe Meets Europe๐Ÿ“ Digital TBCK Meeting for Parents & Doctors๐Ÿ“… May 30, 2026This is such a beautiful opportunity to ...
05/30/2026

๐Ÿ—“๏ธ Europe Meets Europe
๐Ÿ“ Digital TBCK Meeting for Parents & Doctors
๐Ÿ“… 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. ๐Ÿ’œ

๐Ÿ”— Zoom Invite Link:
Join the Zoom Meeting๏ฟผ

๐Ÿ“Œ Meeting ID: 836 7500 7797
๐Ÿ”’ Passcode: 373077

We hope to see so many of our TBCK families there! ๐Ÿ’œ

Europe is coming together for TBCK. ๐Ÿ’œ๐ŸŒ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. ๐Ÿ’œ๐ŸŒ

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:
โœจ TBCK syndrome overview & management
โœจ Parent sharing sessions
โœจ Professional collaboration
โœจ Community connection and support

Colorado, here we come! โœˆ๏ธ๐Ÿฆ“๐Ÿ’™ TBCK Conference 2026๐Ÿ“Childrenโ€™s Hospital of Colorado๐Ÿ“… July 17โ€“19, 2026โœจ Black Ties for Rare...
05/26/2026

Colorado, here we come! โœˆ๏ธ๐Ÿฆ“

๐Ÿ’™ TBCK Conference 2026
๐Ÿ“Childrenโ€™s Hospital of Colorado
๐Ÿ“… July 17โ€“19, 2026

โœจ Black Ties for Rare Gala
๐Ÿ“Hyatt Regency Aurora-Denver
๐Ÿ“… July 19 | 5โ€“10PM

Whether you attend the full conference or just join us for the gala, we would love to have you there! ๐Ÿฉท

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

Address

Chicago, IL

Telephone

+12699213455

Website

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