Jack\u2019s 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.<\/p>\n
Through Jack\u2019s Generosity, Proffitt provides comfort boxes to NICU and PICU families across the state and partners with organizations that fund research into rare mitochondrial diseases.<\/p>\n
RELATED STORY: Jack\u2019s Generosity provides comfort and support for families facing medical challenges<\/a><\/p>\n Swing For Genes Tournament<\/p>\n 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\u201321.<\/p>\n “This is the second year we\u2019re hosting a golf tournament to honor World Mitochondrial Week,” Proffitt said. “It\u2019s all the more important because Jack\u2019s birthday is Sept. 21.”<\/p>\n Proceeds will help fund Jack\u2019s Generosity comfort boxes and support CureARS, an organization dedicated to advancing research into ultra-rare ARS-related mitochondrial disorders.<\/p>\n Spreading Awareness<\/p>\n 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.<\/p>\n 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.<\/p>\n How To Help<\/p>\n Community members can support Jack\u2019s Generosity by entering a golf team, donating raffle items, sponsoring the event, or giving online at jacksgenerosity.com<\/a>.<\/p>\n The nonprofit is also encouraging local landmarks to participate in Light Up for Mito Day. Those interested can contact Proffitt through the organization\u2019s website or by email at kiley@jacksgenerosity.com.<\/p>\n Jack\u2019s Generosity shares updates on its Facebook page<\/a> and Instagram account<\/a>.<\/p>\n