An Oklahoma nonprofit is raising awareness of rare diseases with an upcoming golf tournament fundraiser.

Jack’s Generosity was started by Kiley Proffitt in 2024 in honor of her son, Jack, who died at 7 weeks old from a rare disease.

Three weeks after he was born, tests revealed Jack had inherited mutations on the AARS2 gene, causing a rare form of mitochondrial disease (mito). When presented during infancy, mito is more than 99% fatal. One in 4,000 will experience a form of mitochondrial disease. The first case of mito was discovered in 1962. There is still no approved treatment or cure.

World Mitochondrial Week is Sept. 15 through Sept. 21, 2025. The golf tournament, Swing for Genes, will be held Sept. 26 at Firelake Golf Course in Shawnee. Registration is open for the tournament at j

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