Earlier this year, while our daughter Skylar was fighting life-threatening complications following a bone marrow transplant for Beta-Mannosidosis, we were told to prepare for the worst. Standing beside her hospital bed, we didn’t know if she would make it through the night. 

But Skylar kept fighting. 

That experience strengthened our commitment to advancing a treatment for Beta-Mannosidosis and reinforced why we founded The Lost Enzyme Project. Through Climb4Rare, our goal is to raise $100,000 to help support treatment development and bring hope to families facing a disease with no approved therapies. 

For us, this climb is about more than reaching a summit. Every foot we climb represents the uphill battle rare disease families face every day—the challenges, uncertainty, and determination to keep moving forward in search of a better future. 

For these families, the climb never ends. We climb because children like Skylar deserve a future with treatment, hope, and the chance to live life to its fullest. We climb because these kids can’t wait.