The TBCK Foundation

🩵🧡🩷 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

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.

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.

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!

🇵🇷 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!

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

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.

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.

$26 for ’26 💗🦓

A small gift can help make a BIG difference for our TBCK warriors.

We’re asking our community to Give $26 in 2026 to help the TBCK Foundation continue supporting families, raising awareness, advancing research, and working toward a brighter future for everyone impacted by TBCK.

Whether you give $26, share this post, or invite someone else to join you—every act of support moves our mission forward. 🧬💕

Scan the QR code to donate and help us make 2026 a year of hope, progress, and possibilities for our TBCK community!

What is TBCK? 🧬💗

TBCK is more than the name of a gene—it’s part of the story of families around the world navigating an ultra-rare genetic condition.

Changes in the TBCK gene can affect growth and development and may lead to challenges including hypotonia, developmental delays, seizures, and breathing difficulties. But just as no two genetic changes are exactly the same, no two TBCK warriors are exactly the same.

By sharing information and raising awareness, we hope more people will learn the name TBCK, understand the challenges our warriors face, and join us in supporting a future filled with more research, answers, and hope. 🧬🩷