Together, we will take hope further.
Help us supercharge medical research for kiddos facing a rare genetic disease with no cure.
Progress Tracker
raised to date!
Meet Lo.
The Research
We’re Funding
Children with Zellweger Spectrum Disorder gradually lose their vision because the cells in their retina stop functioning properly. Today, there are no approved treatments.
Hope With Lo proudly supports Project PEX1-VISION, a groundbreaking retinal gene therapy being developed. The therapy is designed to deliver a healthy copy of the PEX1 gene directly to retinal cells with the goal of preserving vision and slowing disease progression.
This isn't just an idea.
More than $4 million has already been invested, preclinical proof-of-concept has been completed, and the project is moving toward its first human clinical trial. Now, researchers need funding to complete the final preclinical safety studies that will help make that trial possible.
Every Hope With Lo donation helps move this research one step closer to children like Lo.
2026 Hope with Lo 5k & Fun Run
Join us for the 4th Annual Hope with Lo 5K and Fun Run, held in Columbus, Ohio. Run, jog, walk — come for a fun time!
Event Date: September 26, 2026
Follow Our Story
Lo Making Headlines
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Hope with Lo 5K raising awareness for rare disorder
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Hope With Lo on Good Day Columbus, 2024 5K & Fun Run
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Local family plans 5K to fundraise for rare genetic disorder research
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Family inspires community with 'Hope with Lo' campaign for rare disorder research
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Columbus family raises awareness for child with rare genetic disorder
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Columbus toddler rides around in style for her ‘Make-A-Wish’
We’re doing this for our Lo & other kiddos.
Lola is a magnetic five-year-old living in Columbus Ohio. Two weeks before her first birthday, she was diagnosed with a rare genetic disease that is usually terminal in childhood. The kind that very little is known about. Instead of hope, we were told to wait and see what Lo’s story will be.
Since then, Lo has shown us what life really is. Being her parents is the single most rewarding thing we’ve ever known. And, while we freely admit we’re biased, we think you’ll love her instantly too.
We want to put hope to work.
What do you do when you’re told there’s no hope?
You go to therapy. You ugly cry. A lot. Like, all the time. You yell at God and the universe. And, at some point, you make a decision. You dig deep, and you say that whatever the outcome, you’re committed to the journey. And so you reset your expectations and learn to view life differently.
We also felt a strong urge to get to work. Why does no one know about this disease? How does research get started for something that so few people face?
We’ve decided to do something about that. We’ll raise awareness and fund research — for our Lo, and for the hundreds of other kiddos (and families) facing a similar uncertain future.
“don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.”
—Michelle Obama
Join us for Lo’s 5k and make your run against Zellweger.
