Jack’s Generosity to host Shawnee golf fundraiser for rare disease families

Jack’s Generosity, an Oklahoma nonprofit founded in 2024 by Kiley Proffitt, is hosting a golf tournament in September to raise awareness and funding for families impacted by rare diseases. Proffitt started the organization in memory of her son, Jack, who was born with a fatal form of mitochondrial disease and spent his seven-week life in the NICU.

Through Jack’s Generosity, Proffitt provides comfort boxes to NICU and PICU families across the state and partners with organizations that fund research into rare mitochondrial diseases.

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Swing For Genes Tournament

The fundraiser, called Swing for Genes, will take place Sept. 26 at Firelake Golf Course in Shawnee. The event coincides with World Mitochondrial Week, Sept. 15–21.

"This is the second year we’re hosting a golf tournament to honor World Mitochondrial Week," Proffitt said. "It’s all the more important because Jack’s birthday is Sept. 21."

Proceeds will help fund Jack’s Generosity comfort boxes and support CureARS, an organization dedicated to advancing research into ultra-rare ARS-related mitochondrial disorders.

Spreading Awareness

Mitochondrial disease affects about 1 in 4,000 people, and there are currently no FDA-approved treatments or cures. Jack was one of fewer than 100 known cases worldwide with his specific mutation, AARS2.

To raise visibility, landmarks and buildings across the globe will glow green for Light Up for Mito Day on Sept. 20. Proffitt said Oklahoma sites are expected to take part, with details to be announced closer to the date.

How To Help

Community members can support Jack’s Generosity by entering a golf team, donating raffle items, sponsoring the event, or giving online at jacksgenerosity.com.

The nonprofit is also encouraging local landmarks to participate in Light Up for Mito Day. Those interested can contact Proffitt through the organization’s website or by email at kiley@jacksgenerosity.com.

Jack’s Generosity shares updates on its Facebook page and Instagram account.