Uniting Through Research, Education, ADVOCACY

Mission Statement

The TBCK Foundation is dedicated to serving families impacted by TBCK Syndrome through accelerating patient-led research, advocacy, education, and a dynamic system of support.

Our Vision + Commitment

We are committed to nurturing diversity, ensuring equitable treatment, and fostering inclusion for all families affected by TBCK Syndrome. We envision intentional advancements through expanding accessibility to resources within the TBCK network that amplify a spectrum of voices, including individuals with disabilities, women, LGBTQ+ community members, and marginalized groups.

Inclusivity enriches the multifaceted perspectives necessary to connect the patient voice with scientists and clinicians, furthering research, and ensuring that all families are served. This helps us ensure that our community, regardless of their background or experiences, receive the proper care and support we deserve.

“The TBCK Foundation believes that families and caregivers impacted by TBCK Syndrome deserve advocacy and support through increased research, funding, and community conversation”

Patient Registry

Join our TBCK Patient Registry and become a cornerstone in the foundation of TBCK research.

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OUR FOUNDERS

As parents to a resilient 1-year-old, our lives took a profound shift when we came to experience the barriers many families impacted by TBCK Syndrome faced in their journey. Working with an overwhelming scarcity of resources, we embarked on a mission to carve a path to better understanding and more concise research. Just like countless others before us, we sought answers, solace, and community. And as we encountered limitations, we discovered a common struggle: the absence of a space where families could connect, share stories, and support each other through the journey ahead.

Our Story

SUPPORT THE RESEARCH AND WORK OF TTF

One of the ways that we can ensure the sustainability of research and support to our families is having the necessary funding to continue our work. Support research and all of the work at TTF by snagging some pretty cool merch! You'll get new swag while supporting other families in their TBCK journey and raising awareness about TBCK Syndrome! 100% of the proceeds go back into the mission.

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Our Partners

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The TBCK Foundation is a registered 501(c)(3) charity organization. Please note that we provide this information for the benefit of TBCK syndrome community. We are not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on individualized medical advising from qualified health care professionals before seeking any information related to their particular diagnosis, cure, or treatment of a condition or disorder. The TBCK Foundation is recognized as a 501(c)3 non-profit corporation. EIN 83-3095299.

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