Peroxisomal disorders are rare, genetic disorders that are usually terminal in childhood.

These disorders affect every system in a person’s body. In Zellweger’s Spectrum Disorder, the peroxisomes in the body’s cells aren’t working properly, are absent, or are severely decreased. Peroxisomes are present in almost every cell of the body, so most bodily functions are affected.

Patients with Zellweger’s typically experience deafness, blindness, developmental delays, adrenal insufficiency, neurological issues, and feeding issues.

The difficult part of this journey is that the disorder manifests itself differently in each individual. Every child has a different experience, different challenges, differing qualities of life, and a unique story.

Currently, there are no effective cures for peroxisomal disorders. Instead, management and treatment of symptoms are crucial to help patients with peroxisomal disorders live longer, healthier lives.

But you can help!

We are on a mission to make a difference for our daughter, Lola (Lo) and kiddos like her. Our Lo has a peroxisomal disorder, a rare disease also known as Zellweger Spectrum Disorder, a condition that is usually terminal in childhood. Currently, there is no cure for this disorder, however, there is HOPE. Breakthroughs in genetic research and medicine happen daily, and we are not giving up hope.

Our daughter Lo was diagnosed when she was just shy of a year old, in March 2021. She is now 5 years old and is teaching us every day about love, life, and hope.

I'm Sara, Lo's Mom, and there's nothing I'd love more than to help my daughter and kiddos like her. We created Hope With Lo (hopewithlo.com), to invite you into our world, and to share our fantastic kiddo, Lo, with you, with the hope of raising awareness and funds for research.

100% of funds raised will be donated for scientific and medical research for kids just like Lo through the Global Foundation for Peroxisomal Disorders (GFPD).
Treatments, and one day a cure, are on the horizon and we invite you to make a difference in the lives of incredibly special kiddos like Lo.

Hope with Lo 5k + Fun Run

By The Global Foundation for Peroxisomal Disorders

Hope with Lo 5k + Fun Run

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