Abstract Genetic variants in the gene encoding the transcriptional regulator KDM5C cause the rare intellectual disability disorder (IDD) Claes-Jensen Syndrome. Features of those with Claes-Jensen Syndrome include, but are not limited to, intellectual disability, speech impairment, seizures, autism spectrum disorder, difficult behavior/aggression, and short stature. Many of these features have significant quality of life consequences for both the affected individual and caregivers. While the direct link between loss of function variants in KDM5C and altered cognition and behavior is clear, how KDM5C functions to orchestrate gene expression programs that mediate critical neuronal processes, and therefore the consequence of variants for mechanisms of IDD, remains unknown. The lack of fundamental knowledge regarding KDM5C has left patients and caregivers with limited options regarding targeted and standardized treatment options. This initially led to the formation of a KDM5C support group on Facebook in 2017, and to the formation of a non-profit the KDM5C advocacy research education and support (KARES) foundation in 2022. In its first year of existence, the KARES Foundation began data collection program through RARE-X/Global Genes, hosted a virtual KDM5C research update and raised sufficient funds to support a pilot project grant to develop a robust biomarker for KDM5C. We now seek funds to help support the first KDM5C focused conference that will bring together families, researchers, and clinicians with the overarching goals of promoting research and developing clinical best practices for treating affected individuals.