In order to honor Cystinosis Awareness Day, which takes place on May 7th each year, a man will attempt to walk 57 miles in a single day in order to raise awareness and money for the Cystinosis Research Network. The person undertaking this daring feat is Clinton Moore, who is president of the organization and a resident of the state of Delaware. Clinton’s primary inspiration is his son Chandler, who suffers from the disease.
Cystinosis is a genetic disorder that is characterized by the unusual buildup of the amino acid cystine within the body. This classifies cystinosis as a type of lysosomal storage disease. The symptoms of cystinosis vary depending on the type, but in the most severe form, which occurs within the first few months of life, symptoms include poor growth, kidney issues, malnutrition, and soft, bowed bones in the legs (hypophosphatemic rickets). Around age two, cystine crystals will begin to appear in the corneas, which causes an increased sensitivity to light. If left untreated, patients experience kidney failure around age ten along with a host of other debilitating symptoms. To learn more about cystinosis, click here.
Along with Clinton’s 57 mile walk, Jessica, who was first diagnosed with cystinosis in 1984, is also preparing a feat of her own. She plans to complete a 24 hike that will require her to hike over 5,700 feet in elevation. Cystinosis patients must endure an unpleasant treatment regimen of pills and eye drops that they must take many times per day in order to manage their condition.
When asked why he and Jessica are choosing to undertake such great challenges of their physical endurance, Clinton only had one thing to say:
“Chandler’s cystinosis doesn’t stop. Until there is a cure, neither will we.”
About ten percent of the U.S. population is living with a rare disease of some kind; it is estimated that cystinosis affects nearly 600 people in the country. However, funding for research is difficult to come by, which is why grassroots, community efforts are essential for obtaining funding and promoting awareness.
If you would like to support the efforts of Clinton and Jessica, click here.