The TBCK Foundation

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Chicago, IL
The TBCK Foundation

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

03/01/2026

YESSSS 🙌💜 We are SO close!!
Only $500 stands between us and our $26,000 goal 🎉 Every single dollar has been poured into hope, research, and support for our TBCK families.

Let’s finish this STRONG 💥
If you’ve been waiting for a sign to give… this is it.
Help us cross that finish line and make it official 🩷

02/28/2026

Today on Rare Disease Day, we pause to honor our TBCK Angel Warriors. 🤍🦓
Their lives were rare. Their impact is everlasting.
They shaped this community in ways that will never fade.
To their families — we see you. We remember them. We carry them with us in every step forward.
Forever part of this foundation. Forever TBCK Strong.

02/28/2026

We love our TBCK researchers 💜🧬
You are turning science into hope and hope into possibility. Thank you for standing with our warriors.

02/28/2026

Today is Rare Disease Day 💜🦓
February 28, 2026
TBCK is ultra-rare — but the needs are real.
Therapies. Equipment. Research. Support for families navigating the unknown.
Children like these warriors deserve access to care, hope, and a future filled with possibility.
If you’ve ever wondered how you can help… this is it.
Your donation today directly supports TBCK families and research efforts working toward better treatments.
Give. Share. Show your stripes. 🦓💙
Together, we make rare seen.

02/28/2026

Today we SHOW OUR STRIPES 🦓💜
Rare Disease Day is about more than awareness — it’s about stories, strength, and the warriors behind every diagnosis. TBCK may be ultra-rare, but our community is loud, proud, and full of resilience.
Every stripe has a story.
Every warrior has a voice.
And together, we make rare seen.
Join us. Share your stripes. Tag us. Let’s flood the feed with awareness today. 💚💙💛💗

02/27/2026

🎉 TOMORROW is Rare Disease Day! 🎉
On February 28th, we SHOW OUR STRIPES for the rare community 💙🦓
TBCK may be ultra-rare, but our warriors are fierce, strong, and impossible to ignore. Tomorrow we celebrate their courage, their progress, and the families who fight every single day.
Wear your stripes. Share their stories. Spread awareness.
Let’s flood feeds with love and support 💪✨

02/25/2026

We are ONLY $2,500 away from reaching our $26,000 goal for Rare Disease Month.
That’s just $625 per day for the rest of February.
When you break it down like that… it feels doable.It feels powerful. It feels like something this community can absolutely accomplish.

Every single dollar matters.
Every single share matters.
Every single warrior matters.

This isn’t just a number, this is research.
This is awareness.
This is hope for our kids.

02/25/2026

Rare diseases affect over 300 million people worldwide — yet 90% have no approved treatment.
Medical costs are 3–5x higher, and most rare diseases begin in childhood.
TBCK Syndrome is one of over 6,000 identified rare diseases. These numbers highlight the urgent need for more research, earlier diagnoses, and targeted therapies.
Awareness leads to action. Action leads to change.
💜

02/24/2026

Rare Disease Day is more than a date on the calendar — it’s a global movement for awareness, equity, and hope. 🌍💜
It’s about fighting for earlier diagnoses.
It’s about access to therapies.
It’s about research.
It’s about community.
And for us, it’s about warriors like Addi and every family living with TBCK and other ultra-rare conditions. 🦓
February 28th we stand together to make rare seen, heard, and supported. Because rare is many. And every life matters. 💪✨

02/22/2026

New TBCK Merch is LIVE!

We just added lots of new items to our TBCK Foundation Bonfire page, and we are so excited about them! 🩵🧡💗

Go check them out and grab your favorites! Every purchase helps us spread awareness and support our warriors.

Let’s wear our TBCK gear with pride and continue showing the world what this community is all about!

https://www.bonfire.com/its-how-we-roll/

02/21/2026

TBCK Syndrome is rare — but our community is strong.
First described in 2016, TBCK is a neurogenetic condition that impacts the brain, muscles, communication, and multiple body systems. With only around 150+ diagnosed patients worldwide, awareness is critical.
Behind every statistic is a child. A family. A warrior.
We continue to push for research, earlier diagnosis, better therapies, and support for every family navigating this journey.
The more we share, the more we shine a light on TBCK.
💙 Learn. Share. Advocate.

02/20/2026

🌡️🦓WE CAN DO THIS 🦓🌡️

Because of YOU, we have raised $22,390 toward our $26,000 goal for Rare Disease Month for TBCK Awareness!
Look at that thermometer climbing. Look at what this community can do!!
TBCK may be rare, but our warriors are fierce. Our families are resilient. And our community is powerful!
We are just $3,610 away from our goal!!

Together, we are louder than rare.
Together, we are stronger than TBCK.

Address

Chicago, IL

Telephone

+12699213455

Website

http://www.tbckfoundation.org/

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