On Cystinosis Awareness Day, Clinton Moore of Delaware, who is also president of the Cystinosis Research Network, will attempt to walk 57 miles in a single day. This event will serve as a method to raise both research funds and awareness about this difficult rare disease.

Clinton’s greatest inspiration is his son Chandler, who has the disease. He must take eye drops and medication several times a day to manage his cystinosis. Unfortunately, these medications come with unpleasant side effects that make life very challenging for him. Ultimately, Chandler needs a cure.

In addition, Jessica, who was first diagnosed with cystinosis in 1984, will attempt to complete a day-long hike that will require her to climb more 5700 feet in elevation.

These courageous participants are committed to fundraising and bringing awareness to cystinosis.

To donate and support this event, click here.