In purchasing a T-shirt, you are not only supporting the foundation, but the individual you love with NUS1 and the families that care for them. In wearing them, you are normalizing NUS1 and will be asked to talk about the rare disorder to others. Making NUS1 more talked about will lead to more awareness which leads to support and research. Like a sports jersey, you are rooting for our team of incredible NUS1 individuals.

The founding of the NUS1 Foundation is organized by parents of children with NUS1 genetic disorder in order to forge a path to connect families and advance research and care. The proceeds from this fundraiser will go to the ongoing research efforts of NUS1 Foundation including gene therapy and drug repurposing.

The Foundation will CONNECT + CARE and EDUCATE families, researchers and medical specialists about the NUS1 genetic disorder. This disorder results from variations on the NUS1 gene that change the vital functioning of proteins involved in neurological development and function. The hallmark symptoms include varying degrees of lifelong tremors, epilepsy and learning difficulties. Some patients struggle with additional complications such as ataxia, scoliosis and myoclonus. Though more research is needed, symptoms have been documented as progressive over time. As a Foundation we seek to advance the care and study of the very rare NUS1 variant to provide a better and healthier future for NUS1 families.