The TBCK Foundation

Home
United States
Chicago, IL
The TBCK Foundation

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

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.

02/20/2026

TBCK Syndrome is ultra-rare — affecting fewer than 200 individuals worldwide — and impacts muscle tone, development, breathing, mobility, and so much more. Behind every diagnosis is a child who deserves access to therapies, medical care, adaptive equipment, and opportunities to thrive.
This Rare Disease Day, you can make a difference.
Your donation helps provide vital resources, fund research, and support families living with TBCK every single day. Together, we can move closer to better treatments and brighter futures for our warriors.
Scan the QR code to donate today 💙

02/17/2026

On February 28, we stand together.
TBCK is rare — but our community is powerful.
Every diagnosis. Every milestone. Every challenge. Every victory.
Every stripe has a story.
This Rare Disease Day, we’re asking you to Show Your Stripes 🦓
Wear zebra print. Share your warrior. Tell your story. Tag us so we can reshare.
Because awareness leads to research.
Research leads to hope.
And hope changes everything.

02/15/2026

Hello TBCK families and Warriors! We are heading out again to NYC to help spread awareness and advocate for our Warriors at the National Puerto Rican Day Parade! Last year was successful and This year we are planning on going bigger with a TBCK FLOAT!!! The parade is June 14, 2026. We know you all can not be there but you all matter and We want you to be able to see your childs' picture on TV and/or Be present! Please include you and your family in the comments if you are attending.

02/14/2026

This Valentine’s Day, we’re celebrating the true hearts of our community… our TBCK Warriors. 💛
Each smile, each milestone, each moment of strength reminds us why we fight for awareness, research, and hope.
We are better because of them. We are stronger because of them. We love because of them.

02/13/2026

We are READY for research! 💗
February is Rare Disease Month, and our hearts are overflowing with gratitude. Because of YOU, we’ve now raised $19,917 toward research for TBCK — and that is incredible.
We are so close to our goal of $26,000, and every single dollar brings us one step closer to answers, treatments, and hope for our TBCK warriors and their families.
Let’s keep going. 💪🦓

02/12/2026

RARE.
Strong.
Seen.

On February 28th, we show up loud and proud for our warriors. 💙
TBCK may be rare, but our community is powerful.
Wear your stripes. Share your story. Tag us so we can repost.
Let’s flood the feed for Rare Disease Day 2026. 🦓✨

02/07/2026

We are READY for research! 💗

February is Rare Disease Month, and our hearts are so full of gratitude. Because of you, we’ve already raised $13,906 toward research for TBCK and that is incredible.

But we’re not done yet!

Our goal for the month of February is $26,000, and every single dollar brings us one step closer to answers, treatments, and hope for our TBCK warriors and families.

02/04/2026

Progress worth celebrating 🎉
More research. Better access to care. A brighter future for kids with complex and rare conditions like TBCK. This is what advocacy in action looks like. 🧬

Address

Chicago, IL

Telephone

+12699213455

Website

http://www.tbckfoundation.org/

Alerts

Be the first to know and let us send you an email when The TBCK Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to The TBCK Foundation: