Central Ohio family surpasses fundraising goal to find cure for rare disease

COLUMBUS, Ohio (WCMH) – A central Ohio family has hit a major milestone in their fundraising efforts to help find a cure for a rare disorder.

Sara Kear and Jake Kaufman had never fundraised before. But they wanted to bring hope to their daughter, Lola, and kids like her. They’ve now exceeded their original goal by tens of thousands of dollars.

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“We feel hopeful, we feel inspired, we feel like the future is bright for us, for Lo, for other kiddos and families,” Kear said.

Lola, or Lo as her parents call her, is about to be 4 years old and her smile can light up a room. Kear and Kaufman last year through Hope With Lo started bringing families around Columbus and the world on a journey with them.

“When you have a kiddo with a rare disease it can feel really isolating and it feels like you’re alone on this journey and so knowing other families of other rare kiddos are being encouraged through this story has been really rewarding,” Kaufman said.

Lola has a rare genetic disorder called Zellweger Spectrum Disorder. It affects development, hearing, vision, and leads to internal health challenges. At this point, there’s not a cure. Kaufman and Kear created Hope with Lo to raise awareness and money to go towards finding one.

“We really believe in a lot of ways that the victory is in the fight so we’re putting forth everything we have into helping our kiddo and other kiddos like her and we believe Lo’s life will be changed through these efforts and other kiddos too,” Kear said.

They originally set out to raise $40,000. In about six months, they’ve raised more than $100,000.

“Hope is 1000% what we’re feeling right now. When you have a kiddo who’s diagnosed with a disease that’s typically terminal in childhood you don’t have a lot of hope, oftentimes you’re told there is no hope so feeling this way today is really special and something we will cherish,” Kaufman said.

$100,000 supports 400 hours of lab research, according to Kear. They held a fundraiser as part of the fundraising efforts in 2023. They’re planning another for this year.

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