Our Story
The TBCK Foundation works to not only connect families and caregivers of those who are affected by the impacts of the rare and under-researched TBCK Syndrome, but also to fund research and expand patient support as the first global organization for TBCK Syndrome. Although The TBCK Foundation first began as a few families sharing their experiences with one another, it has grown into a patient-led advocacy organization hosting annual TBCK Syndrome Conferences, being selected as a grantee of the Chan Zuckerberg Initiative, Rare as One Network, and providing funding for four different researchers across the United States since 2019.
Creating Connections
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.
A Journey of Love and Hope: Our Roots
Our journey begins with the search for answers: a pursuit to understand and advocate for the research of TBCK Syndrome, a genetic anomaly that touched our lives in ways we never imagined. The TBCK Foundation emerged not just as a foundation, but as a lifeline for families like ours, driven by love, determination, and a fierce desire to transform the narrative of rare diseases.
The Birth of a Community
From our desire to bridge this gap, the TBCK Foundation was born—a community with diverse needs, where families find encouragement and mutual support. Like so many rare disease foundations, we dared to dream beyond boundaries of current research and circumstance. We created a refuge on Facebook, nurturing connections between families bound by the common thread of TBCK Syndrome. In this digital space, we embarked on a collective object, celebrating the courage of our young warriors and the unbreakable bonds of Theo’s Village. This is what inspired TBCK Foundation’s mission to harness the importance of the human stories behind diagnosis.
The Path Forward
TBCK Syndrome's discovery in April 2016 brought to light a condition that challenges and unites us all. In the face of uncertainty, our collective hope is unified, illuminating the path forward. In 2023, with around 120 documented cases, and counting, we've proven that in unity, there is strength. As we champion the human stories entwined in every diagnosis, we're driven by the belief that answers are within reach. The pursuit of research and advocacy fuels our collective journey toward treatments and the promise of a cure.
Voices of TBCK
The soul of the TBCK Foundation lies in the stories, the shared moments, and the countless journeys. We’re not just a foundation; we're a sanctuary for the untold stories, a chorus of hope that resonates across distance and boundaries. In every milestone celebrated, we stand united. We are still Theo’s Village, as well as the village for every other child and family in the TBCK Foundation community.
Our Commitment
This is not just a story of a foundation; it's a narrative of love, resilience, and hope. Our gratitude extends to every family that joins our village, to every family that navigates this journey with us. We are committed to advancing research and answers for TBCK Syndrome, knowing that every voice, every effort, contributes to rewriting our shared story.
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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