The TBCK Foundation

Like so many other parents who become advocates, Nicole Stusick’s four year-old son, Theo, guided her to the work of rare disease advocacy. It is kids like Theo and other families affected by rare diseases that guide, drive, and inspire their work.

In 2019, Stusick founded The TBCK Foundation to work on behalf of the families impacted by TBCK Syndrome. TBCK currently has around 90 known cases worldwide. It is a neuro-genetic disease causing epilepsy, intellectual and developmental disability, and a range of other symptoms

While the needs of the disease are critical, TBCK families’ strength and perseverance defines their community. The organization aims to build capacity and expand their work by reaching more families impacted by TBCK Syndrome, and share learnings with other Rare As One grantee organizations