The TBCK Foundation

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The TBCK Foundation

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

10/23/2026

TBCK FOUNDATION IN THE COMMUNITY

We’re proud to highlight our Board Member, Lauryn O’Donnell, for representing the TBCK Foundation at the 2026 Colorado Rare Disease Fair!

Lauryn participated in the panel “Navigating Rare Realities: Stories That Shape Systems,” sharing her perspective and experiences alongside others in the rare disease community.

Having voices like Lauryn’s at these events helps bring awareness, encourage meaningful conversations, and ensure rare disease families are represented.

Thank you, Lauryn, for your continued dedication to the TBCK community and for helping amplify the voices of rare families!

10/21/2026

CAREGIVER VOICES

Communication looks different for every child, but that doesn’t mean understanding isn’t there. 💙

Today, we’re sharing a powerful reminder from one of our TBCK moms: Being nonverbal does not mean being unaware.

Every child deserves to be spoken to, included, and recognized for all they understand.

Every caregiver has a story that matters, and we’re honored to help share their voices.

10/16/2026

🩵🧡🩷 TBCK DAY 2027 SHIRTS ARE HERE!! 🩷🧡🩵

We are so excited to share our official TBCK Day 2027 shirts!

This year’s design is extra special because it represents something so much bigger than just one family. It represents our incredible TBCK Warriors from all around the world! 🌎💕
Every face on the back of this shirt tells a story. A story of strength, courage, resilience, and a family who continues to fight for a brighter future.

Although TBCK is incredibly rare, NO ONE fights alone.
Different colors and materials available!

ORDER YOURS HERE:
https://bonfire.com/tbck-day-2027

10/07/2026

Rare, but never alone. 💗🌎

TBCK syndrome may be ultra-rare, but our community continues to grow as more families around the world find answers, connection, and each other.

Today, we know of 162+ TBCK warriors worldwide, representing 50+ different variants of the TBCK gene. Behind every number and every pin on this map is a person, a family, and a story that matters.

By continuing to raise awareness, we hope to help more families find answers, bring greater recognition to TBCK syndrome, and show every TBCK family that they are never alone.

🌎 Rare, but not alone.

10/06/2026

Swipe. Learn. Share. 🧬🩷

TBCK syndrome may be rare, but every person who takes a moment to learn about it helps make our community a little less invisible.

TBCK is a rare neurogenetic disorder that can affect development, muscle tone, seizures, breathing, communication, and so much more. And because every individual with TBCK is unique, there is still so much we are learning.

Awareness starts with understanding. So swipe through, learn a little more about TBCK syndrome, and then share this post to help us reach someone who may have never heard of TBCK before. 💗

One share can introduce TBCK to an entirely new community.

10/04/2026

Have you heard of TBCK Syndrome? 🩷🩵

TBCK is an ultra-rare genetic neurodevelopmental disorder, but behind those words are incredible individuals and families navigating a diagnosis that can look different for every Warrior.

TBCK can affect development, communication, movement, seizures, feeding, respiratory health, and more—but no two TBCK journeys are exactly alike. Each Warrior has their own abilities, challenges, personality, and story. 🫶

That’s why awareness matters. Every share, comment, and conversation helps more people learn the name TBCK and helps our rare community feel a little less rare.

✨ Swipe through to learn more, then help us spread the word by sharing this post!

10/04/2026

🇵🇷 Let’s bring TBCK families together in 2027! 💙

We’re planning ways to celebrate Puerto Rican heritage and represent our TBCK children and families. To make these events happen, we need more volunteers to help with planning, event-day support, and keeping everyone safe and included. The more hands we have, the more families and children we can represent.

Interested in being part of it? Send me a private message with your email address to get updates and learn how you can help. Every bit of support matters!

09/29/2026

Big things are happening at DEEP! 💜
Formerly DEE-P Connections, DEEP has spent the past several months listening to families, clinicians, researchers, advocates, and partners to help shape what comes next for developmental and epileptic encephalopathies (DEEs) and other severe neurological impairments(SNIs).
And now, they’re ready to share it.
✨ A new name and brand
✨ A new five-year Strategic Plan
✨ A completely redesigned website
✨ A bigger vision for connecting and supporting the community
This is about more than a new look. It’s about building on years of work while creating a stronger, more connected future for families impacted by DEEs and other SNIs.
The mission hasn’t changed. The vision has grown.
We’re proud to partner with DEEP and excited to celebrate this next chapter with them. 💜
Explore what’s new at www.dee-p.org

09/28/2026

We’re teaming up with Citizen Health to bring you a session with Staci Zimmerman, M.Ed. on Sunday, October 4th at 7PM ET // 4PM PT - the questions families usually learn the hard way, and the ones nobody hands you a list of.

Staci has spent 20+ years in special education as a teacher, consultant, and family advocate, and works as an IEP consultant with the Angelman Syndrome Foundation.

Register here: https://ciitizen.zoom.us/webinar/register/WN_SsXg9-VySPa7UeVvapCsVg #/registration

You’ll also learn how you can use Ari, your teammate in rare disease care, to help manage all things IEP and back to school, with live demos, tips and tricks from the product team.

Ari is free for our families, and premium is free through the end of the year for families who join the Beta.

Register even if you can’t make it live and we’ll follow up with what was covered.

09/18/2026

Same diagnosis. Different journeys. One TBCK community.

TBCK Syndrome may share a name, but it doesn’t look the same for every warrior. Some walk independently, some use wheelchairs or gait trainers. Some communicate verbally, while others use AAC or communicate in their own unique ways. Milestones, medical needs, strengths, and challenges can all vary from person to person.

That’s why sharing these stories matters. Every post helps raise awareness, connect families, and remind the world that rare doesn’t mean alone. 🧬🩵

Together, we’re creating a future with more awareness, more research, and more hope for every individual living with TBCK Syndrome.

Address

Chicago, IL

Telephone

+12699213455

Website

http://www.tbckfoundation.org/

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