The TBCK Foundation

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

✨ Meet a Warrior — Coming Next Month ✨In honor of TBCK Syndrome Awareness Day, we’ll be spotlighting a TBCK warrior ever...
01/14/2026

✨ Meet a Warrior — Coming Next Month ✨
In honor of TBCK Syndrome Awareness Day, we’ll be spotlighting a TBCK warrior every day next month 💙🦓
Each story matters. Each warrior is powerful. Each life deserves to be seen, celebrated, and supported.
Join us as we share their journeys, raise awareness, and honor the strength of our TBCK community—one warrior at a time.
💗 Awareness leads to action. Action leads to hope.
EveryStoryMatters RareButStrong

Looking forward to hearing more and putting our plans into action! Come and Join our zoom meeting! Bring your ideas or ...
01/13/2026

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!

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!

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 our community is worldwide 🌍Over 100 diagnosed individuals across more than 20 countries—and every...
01/12/2026

TBCK may be rare, but our community is worldwide 🌍
Over 100 diagnosed individuals across more than 20 countries—and every dot on this map represents a warrior, a family, and a story that matters. Together, we are raising awareness, supporting research, and connecting families around the globe. 💙🧬

Mark your calendar!February 1st is TBCK Awareness Day and February 28th is Rare Disease Day.There are so many ways to ma...
01/11/2026

Mark your calendar!
February 1st is TBCK Awareness Day and February 28th is Rare Disease Day.
There are so many ways to make an impact this month: 💙 Donate
💙 Start a fundraiser
💙 Host an event
💙 Wear your TBCK gear
Every action—big or small—helps shine a light on TBCK and supports our incredible warriors. Thank you for standing with our community.

01/08/2026

TBCK may be rare, but this community is powerful. Together, we show up for one another—always.

We are TBCK. United. Strong. Never alone.
💚🩵🧡💗

* we do not own rights to this music*

TBCK Day is February 1st, 2026, and we’re so excited to share this year’s awareness shirts! Every shirt represents our i...
01/06/2026

TBCK Day is February 1st, 2026, and we’re so excited to share this year’s awareness shirts! Every shirt represents our incredible TBCK warriors, the strength of our community, and the reminder that no one fights alone.

By ordering a shirt, you’re helping raise awareness, support research, and stand with families around the world impacted by TBCK syndrome. Plus, how cute is this zebra design?!

Order now: https://www.bonfire.com/tbck-day-shirts-2026/

01/06/2026

February is an important month to the rare disease community!
2/1 is TBCK Day and 2/28 is Rare Disease Awareness Day.

February 1st is TBCK Awareness Day 💛TBCK Syndrome is ultra-rare, impacting fewer than 150 known individuals worldwide. A...
01/04/2026

February 1st is TBCK Awareness Day 💛
TBCK Syndrome is ultra-rare, impacting fewer than 150 known individuals worldwide. Awareness leads to research, and research leads to hope.
This 2/1, consider giving $21 for TBCK to support families and help move research forward.
Every share, every dollar, every voice matters.

✨ SAVE THE DATE ✨We are so excited to officially share that the TBCK Conference 2026 will take place July 17–19, 2026 in...
01/04/2026

✨ SAVE THE DATE ✨

We are so excited to officially share that the TBCK Conference 2026 will take place July 17–19, 2026 in Aurora, Colorado!!

Mark your calendars and start planning now — we cannot wait to be together in Aurora in 2026.

❄️Snowflakes In July❄️

This conference is more than an event, it’s a gathering of our TBCK families, warriors, researchers, clinicians, and supporters who come together to learn, connect, and support one another. From meaningful conversations and shared experiences to hope-filled moments that remind us we are never alone, this weekend is all about community.

The Black Ties for Rare Disease Gala will take place Sunday evening, July 19th, immediately following the conference.

On 2/1 (TBCK Day) we’re asking our village to give just $21 💖A small gift can make a BIG impact for TBCK warriors and th...
01/03/2026

On 2/1 (TBCK Day) we’re asking our village to give just $21 💖
A small gift can make a BIG impact for TBCK warriors and their families.
Donate, share, and stand with us. 💪✨

Every donation helps move critical TBCK research forward—bringing us closer to answers, and hope for families around the...
12/30/2025

Every donation helps move critical TBCK research forward—bringing us closer to answers, and hope for families around the world. 💪✨

📲 Tap the link, scan the code, and help us make an impact today.
🔗 https://www.gofundme.com/f/tbck-ready-for-research?lang=en_US

GiveHope ResearchMatters

12/27/2025

✨ Two important dates. One powerful community.
🦓 February 1 – TBCK Awareness Day
💙 February 28 – Rare Disease Day
Help us spread awareness for those living with rare diseases.

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Chicago, IL

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+12699213455

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