The idea to walk a consecutive 57 miles was inspired by some fellow rare disease-rs. A handful of men were bicycling across the US in 9 days to raise funds and awareness. They beat their goal and made their story into a movie which spurred this fundraiser.
Our cystinosis community deserve an inspirational story like that. They deserve better treatments. They deserve a better quality of life and a longer life. And we are making it our mission to make sure that happens.
In honor of Cystinosis Awareness Day (5.7), CRN President and father to 12-year-old Chandler with cystinosis, will attempt to walk 57 miles without stopping. Cystinosis Awareness Day is observed on 5.7 to represent the most common cystinosis mutation: 57-kb deletion.
Please pray for good weather over Mother's Day weekend as Clinton sets off on his 24-hour march. There will be no rain date because cystinosis doesn't stop. Neither we will until there is a cure!