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A foundation raising money to fight childhood brain cancer has stood the test of time, still going strong 13 years after the death of the North Huntingdon girl whose short life inspired the initiative.
“We will keep going until no other child has to endure what Grace (Ekis) did. We can’t just stand back and do nothing as more and more children are diagnosed each and every day,” said Ashley Metz Leax, 36, of North Huntingdon. Leax is on the board of the Reflections of Grace Foundation, which helps families impacted by childhood brain cancer and funds research.
Grace’s parents, Brian and Tamara Ekis of North Huntingdon, created the Reflections of Grace Foundation in December 2008, after Grace died of a rare brain cancer at age 5 on Valentine’s Day earlier that year. She was diagnosed in January 2007 with diffuse intrinsic pontine glioma, a branch-like tumor on the brain stem for which there is no known cure and limited treatment options.
The foundation and its fundraising efforts are kept alive by what Leax says is a “a dedicated and driven group of volunteers” who are passionate about changing the outcome for children suffering from brain cancer.
“We’re so very fortunate,” to have “a core of volunteers,” Leax said.
Tamara Ekis, a founder of the Reflections of Grace Foundation, agreed.
“They have helped us sustain our momentum,” Ekis said. “Our work is not done yet.”
Leax is one of those people.
“On a personal level, I feel this is my calling in life,” she said.
The director for the popular Race for Grace, Leax works with her husband, James, who is chairman of race logistics for a course that winds around the Norwin High School campus. She handles those duties along with raising three daughters, Brenna Grace, 9; Maeve, 5; and Keeva, 3, and working as a human resources manager for Westinghouse Electric Co. in Cranberry.
She became involved in the fundraising efforts through her family. Grace attended a day care in Braddock Hills, where Leax’s mother worked. To support Grace’s family, who had lived in Forest Hills, Leax and her sister, Amanda, organized a race around Woodland Hills High School in Churchill in 2007. It was the only race Grace was able to attend.
“After Grace’s journey to heaven, we wanted to continue the race,” Leax said.
They have been doing just that, moving the event to Norwin High School as the Ekis family moved to North Huntingdon. Because of the covid pandemic last year and restrictions on events, the race went virtual but is planned to resume in the spring, Leax said.
The fact that the fundraising efforts continue today, Leax attributes in part to Grace herself.
“She has continued to touch so many people, near and far,” Leax said of Grace. “She was insightful beyond her life,” telling her mother at one point, “this is all for God.”
Leax also attributed the long life of the foundation to “the outpouring of continuing community support.”
That support has been so strong that the Reflections of Grace Foundation has raised $1.2 million.
“It’s phenomenal,” Tamaris Ekis said.
The foundation awarded $759,000 to families with children impacted by brain cancer and provided $475,000 in critical research grants.
“We never take for granted that people are supportive,” Leax said, noting that participating in the fundraising events gives people the chance to be “part of a greater purpose.”
“This is us trying to win the war against pediatric brain cancer. … If we don’t do something, no one will,” Leax said. “Bad things happen when good people do nothing.”
