SOARING BRIGHT #2 is a NUS1 Foundation T-shirts that depicts the adventurous and beautiful flight that NUS1 individuals take on. The rarity of this disorder requires a team of specialists and advocates for connecting the care for individualized learning and medication monitoring. Like butterflies migration, the expedition expands on resourcefulness and highlights the radiant wings of individual beauty.

In purchasing a T-shirt, you are not only supporting the launch of our NUS1 Foundation website, but supporting 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 initial setup and launch of the Foundation?s website, and establishing non-profit status.

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.

INTERESTED TO SUPPORT NUS1 FOUNDATION WITH A DONATION INSTEAD?

Contribute to the NUS1 Foundation Zeffy account (linked here)