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Kristi Eaton, ke comms
Feb 19, 2025
Rare Disease Day is Feb. 28; a March 1 fundraiser in Tulsa will raise money to help support families
Contact:
Kristi Eaton
Call/Text: 918.219.2384
TULSA – A local nonprofit organization dedicated to raising awareness about rare diseases is honoring two local women at an upcoming fundraiser to be held around Rare Disease Day, which is Feb. 28.
Jack’s Generosity was started by Kiley Proffitt in 2024 in honor of her son, Jack, who passed away at 7-weeks-old from a rare disease. At 3 weeks of age, 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, and there is still no approved treatment or cure. Feb. 28 marks Rare Disease Day.
Kiley Proffitt said the nonprofit organization is a way to make something positive come from a devastating situation. The nonprofit will host a fundraiser in Tulsa on Saturday, March 1, 2025, called Unique Jeans. A portion of event proceeds will be designated to fund a joint project with Cure ARS to supply emergency support bags to Cure ARS families.
“Raising awareness around rare diseases like mitochondrial disease is something I have grown to become passionate about,” Proffitt said. “If I can help support families through such a difficult time, it will be worth it.”
Jack’s Generosity provides comfort boxes to families in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU) and supports families and organizations raising awareness and/or funding efforts for rare mitochondrial diseases treatments and advancements toward a cure.
At the March 1 fundraiser event in Tulsa, Nicole Brueggemann, Saint Francis’ Children's Hospital ECMO coordinator, and Kim Beeler, Oklahoma Family Network’s Infant Bereavement coordinator, will be honored for their work with families undergoing challenging circumstances. The Life Support Award recognizes Oklahoma healthcare workers who support the mission of Jack’s Generosity to spread kindness and encourage communication in their workplace and community.
*Photos are available upon request.
ABOUT JACK’S GENEROSITY
Jack’s Generosity is a nonprofit organization raising awareness about rare diseases. Founded in 2024 by Kiley Proffitt in honor of her son, Jack, the organization provides comfort boxes to families in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU). It also supports families and organizations raising awareness and/or funding efforts for rare mitochondrial diseases treatments and advancements toward a cure. To learn more, visit JacksGenerosity.com.