The TBCK Foundation

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

Progress worth celebrating 🎉More research. Better access to care. A brighter future for kids with complex and rare condi...
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. 🧬

Behind every statistic is a family, a story, and a warrior. đź’›This month, we stand together for the rare disease communit...
02/03/2026

Behind every statistic is a family, a story, and a warrior. đź’›
This month, we stand together for the rare disease community.

Meet Emrie đź’•A smile that lights up every room and a heart full of determination. Diagnosed with TBCK at 18 months, Emrie...
02/02/2026

Meet Emrie đź’•
A smile that lights up every room and a heart full of determination. Diagnosed with TBCK at 18 months, Emrie continues to grow stronger every single day. Her joy, grit, and love for life remind us what true strength looks like. 🦓✨

TBCK Day 2026 đź’™Thank you for standing with us, for sharing our stories, and for helping shine a light on TBCK syndrome.B...
02/02/2026

TBCK Day 2026 đź’™
Thank you for standing with us, for sharing our stories, and for helping shine a light on TBCK syndrome.
Because of you, our warriors are seen, supported, and surrounded by hope. 🦓

Meet Drae đź’™Drae is pure love wrapped in the sweetest smile. From his love of music, lights, bubbles, and kisses to the j...
02/02/2026

Meet Drae đź’™
Drae is pure love wrapped in the sweetest smile. From his love of music, lights, bubbles, and kisses to the joy he finds in being surrounded by his sisters, Drae fills every space with warmth. Though his journey with TBCK comes with challenges, his determination and gentle spirit shine through every single day. We are honored to share Drae’s story and celebrate the love, joy, and light he brings to his family and the TBCK community. 💙

Meet Rayna 💖Rayna is pure sunshine and a true TBCK warrior. Her joy is contagious—whether it’s enjoying her favorite tre...
02/02/2026

Meet Rayna đź’–
Rayna is pure sunshine and a true TBCK warrior. Her joy is contagious—whether it’s enjoying her favorite treats, playing “Simon Says,” or hearing familiar words repeated with love. Nothing lights up her smile more than being surrounded by the people she loves, especially her big sister. Rayna’s gentle spirit, happiness, and love remind us every day why sharing these stories matters. We are so honored to celebrate her and the light she brings to the TBCK community. 💖

Meet Sara đź’–Sara is a bright and joyful TBCK warrior who fills every day with music, favorite movies, and big smiles. She...
02/02/2026

Meet Sara đź’–
Sara is a bright and joyful TBCK warrior who fills every day with music, favorite movies, and big smiles. She loves good food, singing along to her favorite shows, and spending time in the pool during aquatic therapy. Sara’s joyful spirit and love for life shine through in everything she does, and we are so honored to share her story and celebrate her as part of the TBCK community. 💖

Join the TBCK Warrior Club 💙When you become a monthly supporter, you’re helping families impacted by TBCK syndrome acces...
02/02/2026

Join the TBCK Warrior Club đź’™
When you become a monthly supporter, you’re helping families impacted by TBCK syndrome access research, resources, advocacy, and a community that truly understands. Your ongoing support makes a real difference—every single month. Together, we can create lasting impact and move TBCK research forward.
đź’™ Learn more & join us at tbckfoundation.org

Meet Melismar 💖Melismar—lovingly known as Mely—is strength, joy, and resilience wrapped into one incredible TBCK warrior...
02/02/2026

Meet Melismar đź’–
Melismar—lovingly known as Mely—is strength, joy, and resilience wrapped into one incredible TBCK warrior. Through every challenge, she continues to shine with faith, courage, and a love for music, movies, and all things princess. Mely’s spirit reminds us that strength looks different for everyone, and that joy can exist even in the hardest moments. We are honored to share her story and celebrate the powerful light she brings to her family and the TBCK community. 💖

Meet Janlean đź’™Janlean is the definition of strength and resilience. Living with TBCK syndrome, she continues to inspire ...
02/02/2026

Meet Janlean đź’™
Janlean is the definition of strength and resilience. Living with TBCK syndrome, she continues to inspire everyone around her with her courage, perseverance, and radiant smile. Through every challenge, Janlean has taught her family the importance of cherishing each moment and finding joy in the present. She is a true TBCK warrior, and her strength gives others the courage to keep going. We are honored to share her story and celebrate the incredible light she brings to this community. đź’™

Meet Susie đź’–Susie fills every day with laughter, wiggles, and pure joy. From dancing to music to splashing at bath time,...
02/02/2026

Meet Susie đź’–
Susie fills every day with laughter, wiggles, and pure joy. From dancing to music to splashing at bath time, her happy spirit shines through in everything she does. Diagnosed with TBCK at a young age, Susie continues to amaze her family with her strength, determination, and beautiful smile. She reminds us that every milestone—no matter how small—is worth celebrating. 💕

Did you know TBCK affects multiple systems throughout the body?TBCK Syndrome is a very rare genetic condition that can i...
02/02/2026

Did you know TBCK affects multiple systems throughout the body?
TBCK Syndrome is a very rare genetic condition that can impact development, communication, mobility, vision, breathing, and more. No two warriors look the same—but every story matters. By sharing facts, faces, and experiences, we raise awareness, build understanding, and move closer to answers for our community. 💙🧬

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