The TBCK Foundation

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

We’re taking TBCK to New York 💙This year, our warriors and their families will proudly walk in the National Puerto Rican...
04/27/2026

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. 💫

We want to take a moment to recognize and truly appreciate Dr. Xilma Ortiz-Gonzalez. 💙🧬Dr. Ortiz-Gonzalez is not only an...
04/18/2026

We want to take a moment to recognize and truly appreciate Dr. Xilma Ortiz-Gonzalez. 💙🧬

Dr. Ortiz-Gonzalez is not only an incredible pediatric neurologist at CHOP, but she is also a passionate advocate and researcher dedicated to understanding rare neurogenetic conditions like TBCK. Her work diving into the molecular mechanisms behind neurodegeneration is helping pave the way for real answers and real hope for our families.

What makes her impact even more meaningful is her heart. She doesn’t just study these conditions, she cares deeply for the children and families behind them. She listens, she advocates, and she continues to push research forward so that one day, treatments can be tailored to each child.

From the very beginning, she has supported the TBCK community and has been a driving force in helping move our mission forward. Because of people like Dr. Ortiz-Gonzalez, we are closer to understanding, closer to answers, and closer to a future filled with more possibilities for our children.

We are so grateful to have her in our corner. 💫

Our incredible TBCK Foundation Scientific Research Director, Emily, connecting with leaders from REN, COMBINEDBrain, and...
04/16/2026

Our incredible TBCK Foundation Scientific Research Director, Emily, connecting with leaders from REN, COMBINEDBrain, and the MED13 Foundation at the NORD Science Symposium.

This is what progress, collaboration, advocacy, and voices coming together to push rare disease research forward looks like. Emily continues to show up for our TBCK community in the most meaningful ways, working behind the scenes to make sure our families are seen, heard, and moving toward answers.

Give $26 in 2026 and help us continue fighting for TBCK warriors.Your support means more than you know.
04/16/2026

Give $26 in 2026 and help us continue fighting for TBCK warriors.
Your support means more than you know.

Looking forward to hearing more and putting our plans into action! Come and Join our zoom meeting! Bring your ideas or ...
04/07/2026

Looking forward to hearing more and putting our plans into action!

Come and Join our zoom meeting! Bring your ideas or come hang out and prepare with us!

We are official registered for the parade!

En nuestra última reunión, tuvimos grandes ideas. ¡Estoy deseando saber más y poner en marcha nuestros planes!

¡Ven y únete a nuestra reunión de zoom! ¡Trae tus ideas o ven a pasar el rato y prepárate con nosotros!

¡Estamos oficialmente registrados para el desfile!

Join Zoom Meeting
https://us02web.zoom.us/j/84533843934

Meeting ID:

Thank you again for all who made it happen this past summer and Thank you for everyone’s support!

¡Gracias de nuevo por todos los que lo hicieron realidad el verano pasado y gracias por el apoyo de todos!

TBCK may be rare… but these kids are anything but small 💗They are strong.They are resilient.They are living proof that j...
04/06/2026

TBCK may be rare… but these kids are anything but small 💗
They are strong.
They are resilient.
They are living proof that joy exists even in the hardest places.
And the more people who understand TBCK, the more support these families receive 🤍

$26 for 2026 💜A small gift can make a life-changing impact for families affected by TBCK.Research only moves forward bec...
04/01/2026

$26 for 2026 💜
A small gift can make a life-changing impact for families affected by TBCK.
Research only moves forward because of people like you.
Give hope. Give today.

New York, here we come! 🇵🇷🗽Our TBCK Warriors are taking on the National Puerto Rican Day Parade—walking with strength, p...
03/31/2026

New York, here we come! 🇵🇷🗽
Our TBCK Warriors are taking on the National Puerto Rican Day Parade—walking with strength, pride, and purpose. 💜
Come cheer them on, celebrate with us, and help us spread awareness for TBCK!

TBCK is rare… but these warriors are unforgettable 💚Awareness matters. Knowledge matters.Share to help more people under...
03/24/2026

TBCK is rare… but these warriors are unforgettable 💚
Awareness matters. Knowledge matters.
Share to help more people understand TBCK.

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Chicago, IL

Telephone

+12699213455

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