The TBCK Foundation

11/26/2025

GivingTuesday is coming! 💚
On Dec 2, help us fuel TBCK research and stand with our warriors. 🧬✨

11/24/2025

Mark your calendars! 📅
On December 2, 2025, we’re joining forces for TBCK Warriors across the world. Every donation supports research, resources, and real families walking this rare journey.
Let’s show what a community united can do. 💛🧬

11/23/2025

Keeping our TBCK warriors healthy is the greatest gift we can give this season. 💛✨
A little extra care goes a long way. Let’s spread love, not germs!

11/21/2025

Did you miss this year’s TBCK Conference?
Don’t worry — you can still catch Dr. Ortiz’s full presentation on our YouTube channel! 🎥💙

Our TBCK Champion Dr. Ortiz-Gonzalez gives us a primer on TBCK for those new to our community. She also told us about Natural History Studies and outlined th...

11/21/2025

GivingTuesday is almost here, and our message is clear:
TBCK Warriors are READY for RESEARCH.
Your generosity on December 2 will fuel research, support families, and push us closer to breakthroughs our community deserves.
Together, we make hope possible. 💛🧬

11/20/2025

🌟 ‼️TBCK DAY SHIRTS — 2026 EDITION! ‼️🌟
No one fights alone — let’s show our stripes together.

We’re getting ready for our 2026 TBCK Day shirts, and it’s time to gather ALL warrior names once again. If you would like your warrior included on the back of this year’s shirt, please comment their name below.

This shirt has become such a powerful symbol of our community. A reminder that even though we are spread across the world, we are united by a gene and a shared fight.

In the TBCK community, no one fights alone.
Let’s honor every warrior, every family, and every story.

👇Drop your warrior’s name in the comments below!👇

11/19/2025

Parenting a child with a rare genetic disorder can feel overwhelming — but no parent should ever have to walk that journey alone. 💛

In her new book, Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease, rare mom and advocate Nikki McIntosh shares wisdom, emotional support, and practical tools to help families feel seen, supported, and connected through the challenges of rare disease life.

At the TBCK Foundation, we believe in empowering parents with the resources, education, and community they need to advocate for their children. Nikki’s book beautifully reflects that mission — reminding all of us that strength grows when we lift each other up.

You can find Rare Mamas wherever books are sold, including Amazon, Barnes & Noble, Apple Books, Bookshop.org, and Target. 📚✨

11/14/2025

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:845-3384-3934

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!

11/10/2025

Missed the 2025 TBCK Conference? No worries — you can catch every session on our YouTube channel! 💙
👉 Watch here: https://youtu.be/MFQSdzseHC4

11/10/2025

Sticking together to spread awareness for TBCK one sticker at a time! From laptops to water bottles, show your support and share your advocacy wherever you go!
📸 Snap a pic with your TBCK stickers and tag us

Email emily@tbckfoundation.org to get yours today 💌

11/08/2025

https://us02web.zoom.us/j/87801331394

Here is our conference link!
Password: 400355

11/08/2025

🎉 Today’s the day! Our 2025 TBCK Virtual Conference is officially here! 💻✨
We can’t wait to connect, learn, and grow together as a community.
If you’re tuning in live, tag us and share your setup — we’d love to see how you’re joining in! 💙💛💗