The SPATA Foundation's Mission is to advocate, educate, and raise funds for research towards SPATA5 and SPATA5L1 Related Disorders. Our hope is that our efforts will help us better understand the function of the genes & lead to treatment for disorders related to these genes.
The SPATA Foundation was began by the George family after their son Luca was diagnosed with SPATA5L1, an ultra-rare genetic condition characterized by epilepsy, hearing loss, developmental delay, and more. They began the foundation in November 2023 and have already secured mouse models for research & are working on translational studies to find a cure.
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