Local family plans 5K to fundraise for rare genetic disorder research
COLUMBUS, Ohio ( WCMH ) – A Columbus family is continuing their efforts to help find a cure for a rare genetic disorder with a new 5K to fundraise.
Lola is a local 4-year-old who is letting the world know she is growing up, even if it sometimes looks different than her peers. She has Zellweger's Spectrum Disorder , a rare genetic disorder. It affects her internal health as well as her sight, hearing and development, but Lola is not letting that slow her down.
"Lola recently has very much embraced being a big girl," said Sara Kear, Lola's mom.
She hasn't just gotten taller in the last year. She's shown her parents she wants pull ups instead of diapers, prefers getting dressed standing up instead of laying down, and does not want to be in a highchair.
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"She's really come into her own as a thriving toddler, as a thriving 4-year-old," Jake Kaufman, Lola's dad, said.
Those big moments might be different than many kids Lola's age, but Kear and Kaufman celebrate them just the same.
"We've really learned how to celebrate inch stones, so that could look like Lo reacting to something we're saying or laughing in a different way or having a different sound she's annunciating," Kaufman said.
There is not currently a cure for Zellweger's Spectrum Disorder, but Kaufman and Kear are dedicated to changing that. They hope to raise $50,000 for research this year, which would fund 200 hours of dedicated lab time.
"She's a huge part of this right and anyone who has met Lo knows she's a big personality and we really see her as championing this herself," Kear said. "It's hoping with her not just for Lo, but for all of these kiddos and all of these families."
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Their next fundraising venture is the Hope With Lo 5K on the Quad at Ohio State University. Registration is still open, and all proceeds go to the fundraising efforts. 5K participation is $40 per runner, a Fun Run is $15 per participant and families with "Rare Kiddos" participate free of charge.
This is on top of the tens of thousands of dollars they have already raised, surpassing the $100,000 as early as March of this year. Despite never fundraising before these efforts, the pair are determined to keep raising money and awareness.
Lola and her family were just in Washington D.C. earlier this summer to meet with other families and researchers dedicated to the same cause.
"When you have an opportunity to be around people who get it, who understand what you're going through, who navigate the same things you're navigating, it really is nourishing to be part of that experience," Kaufman said.
While there, they also had the chance to share their story with the U.S. Food and Drug Administration (FDA).
"Just furthered Jake and I's resilience in this cause and this effort, because there will be breakthroughs, there will be new treatments and its just how quickly we can get those to come to fruition, so it was exciting," Kear said. "We came out of there fired up for the Hope With Lo event and for Hope With Lo fundraising this year."
