Our Story: Fighting for Hope, One Step at a Time

Our daughter, Lola (Lo), was diagnosed with a rare genetic condition called Zellweger Spectrum Disorder (ZSD) just before her first birthday. ZSD is a terminal disease that affects nearly every part of the body—including hearing, vision, development, and mobility. There is no cure.

Today, Lo is 5 years old. She’s blind, deaf (with cochlear implants), nonverbal, and faces many complex health challenges. And yet, she radiates joy and strength. She has taught us more about love, resilience, and hope than we ever imagined.

We created Hope With Lo to be her voice—and to fight alongside her for a better future for children like her.

Peroxisomal disorders like ZSD are devastating, but there is hope. Advances in gene therapy, base editing, and genetic medicine are accelerating. The science is closer than ever. What’s missing is funding.

That’s where you come in.

100% of your donation supports research through the Global Foundation for Peroxisomal Disorders (GFPD)—a 501(c)(3) nonprofit funding the labs and scientists working toward treatments and, one day, a cure.

This is more than a way to support our family—it’s a way to give a voice to children like Lo who cannot speak for themselves.

The sooner we fund this research, the sooner we bring real hope—and real treatments—to the kids who need it most.

Thank you for being part of our fight.
Jake & Sara
Lo’s proud parents

Hope with Lo 5k + Fun Run

We’re raising a voice for all Warriors with peroxisomal disorders!