The TBCK Foundation

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

Every conversation about TBCK Syndrome begins with awareness. 🧬TBCK is an ultra-rare neurogenetic disorder that affects ...
07/28/2026

Every conversation about TBCK Syndrome begins with awareness. 🧬

TBCK is an ultra-rare neurogenetic disorder that affects multiple body systems, with symptoms and severity varying from person to person. Increased awareness can lead to earlier recognition, more informed care, and stronger support for individuals and families living with TBCK.

If you’d like these educational cards to share with your healthcare providers, therapists, school, hospital, or local community, please contact Emily at [email protected].

Together, we’re building a more informed future for every TBCK Warrior. 💙

💙💗🧡 Starting this August, it’s time to get moving for a cause! 💙💗🧡Join the TBCK Foundation’s Miles for a Cause 2026 and ...
07/24/2026

💙💗🧡 Starting this August, it’s time to get moving for a cause! 💙💗🧡

Join the TBCK Foundation’s Miles for a Cause 2026 and help us raise awareness for TBCK syndrome—one mile at a time.

Whether you walk, run, roll, bike, swim, or move in your own way, every mile represents hope, support, and a stronger community for our TBCK warriors.

Are you ready to be on the move? đź’™

An unforgettable evening of hope, celebration, and community. Thank you to our families, sponsors, donors, volunteers, a...
07/23/2026

An unforgettable evening of hope, celebration, and community. Thank you to our families, sponsors, donors, volunteers, and everyone who helped make this night so special. Together, we’re creating a brighter future for the rare disease community. 💙

Feel free to tag yourself and share your favorite memories! 🖤✨

A weekend filled with connection, learning, hope, and unforgettable memories. Thank you to everyone who joined us and he...
07/23/2026

A weekend filled with connection, learning, hope, and unforgettable memories. Thank you to everyone who joined us and helped make this year’s conference so special. 💙

Feel free to tag yourself, your family, and share your favorite moments!

Because of your generosity, our Silent Auction was a huge success!đź’™ 181 bids placedđź’š $11,415 raisedđź©· 34+ amazing support...
07/21/2026

Because of your generosity, our Silent Auction was a huge success!

đź’™ 181 bids placed
đź’š $11,415 raised
đź©· 34+ amazing supporters

Every bid, every donation, and every person who shared, encouraged, or participated helped make a difference for TBCK families around the world.

Your support allows us to continue funding family resources, research initiatives, educational opportunities, and events that bring our rare community together.

From the bottom of our hearts, thank you for believing in our mission and standing alongside our warriors. Together, we’re creating hope and making sure no TBCK family walks this journey alone. ❄️

07/21/2026

What an unforgettable evening. ✨🖤

Our Black Ties for Rare Gala was so much more than a beautiful event—it was a night of hope, connection, and a shared commitment to making a difference for the rare disease community.

To every family who traveled near and far, every sponsor who believed in our mission, every donor who gave so generously, every volunteer who served behind the scenes, and every guest who joined us—thank you. Your support is helping us create a future where no rare family has to walk this journey alone.

Together, we celebrated how far we’ve come, honored the strength of our community, and took another step toward advancing research, awareness, and support for families affected by TBCK syndrome and other rare diseases.

From the bottom of our hearts, thank you for making this night so special. We can’t wait to continue this journey with all of you. Until next year. ❄️💙

Our mission is only possible because of the incredible generosity of our sponsors. 💙❄️Thank you to each business, family...
07/20/2026

Our mission is only possible because of the incredible generosity of our sponsors. 💙❄️

Thank you to each business, family, and organization that partnered with us to make the Black Ties for Rare: A Rare Disease Gala a success. Your support helps create opportunities for connection, education, research, and hope for families affected by TBCK syndrome.

Together, we’re making a lasting impact—one family, one partnership, and one act of generosity at a time.

From all of us at the TBCK Foundation… thank you for believing in our mission. 💙

07/19/2026

What an incredible weekend. 💙❄️

To everyone who attended, spoke, volunteered, sponsored, donated, and joined us from around the world—thank you for making the 2026 TBCK Foundation Conference so special. Every conversation, every connection, and every shared story reminded us that no rare family has to walk this journey alone.

If you missed any sessions, don’t worry! Every presentation was recorded. If you’d like access to the conference recordings, just reach out to us and we’ll make sure you receive them.

Thank you for being part of this amazing weekend. We can’t wait to continue building hope, advancing research, and growing this incredible community together. 💙

✨ Tonight is the night! ✨Join us for Black Ties for Rare: A Rare Disease Gala as we come together for an evening of insp...
07/19/2026

✨ Tonight is the night! ✨

Join us for Black Ties for Rare: A Rare Disease Gala as we come together for an evening of inspiration, connection, and hope.

🖤 Tonight’s Schedule
🕔 5:00 PM – Welcome
🍽️ 6:15 PM – Dinner
🎤 7:00 PM – Keynote by Johnmichael Colon
🤫 8:00 PM – Silent Auction

đź“Ť Hyatt Regency | Aurora, Colorado

Whether you’re joining us to support the rare disease community, hear incredible stories, or help make a difference, we can’t wait to spend the evening with you. Every guest helps move our mission forward. See you tonight! ❄️

“There’s not a test for family.” ❤️TBCK doesn’t just affect one person—it touches parents, siblings, grandparents, frien...
07/19/2026

“There’s not a test for family.” ❤️
TBCK doesn’t just affect one person—it touches parents, siblings, grandparents, friends, caregivers, and an entire community. Every family’s journey looks different, but every story matters. Thank you for walking this road together.

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Chicago, IL

Telephone

+12699213455

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