Clinton Moore – a devoted father and tireless advocate for his son, who lives with a rare disease called cystinosis – is on a mission to help bring awareness to the condition that has affected his son’s life and impacted his family to its core.
In a new documentary that recently premiered, Moore describes when his son was first diagnosed with cystinosis, and how difficult it was to accept the doctor’s conclusion. A rare disease diagnosis wasn’t the answer he wanted, but he soon came to understand it.
Cystinosis is a rare genetic disease that results in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. Symptoms usually appear early in a child’s first year of life, and it's a lifelong disease. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, and hypothyroidism, among other issues. Without treatment, children with cystinosis will usually develop end stage kidney failure or die prematurely.
Moore says since cystinosis never stops, so neither does he. In the film, he explains that giving up hope means you’ve completely given up, so he won’t allow that to happen. In a heartwarming moment in the film, Moore explains how amazed he is that his son has chosen to be as happy as he is each day, considering all his challenges. Part of his son’s daily routine includes a regimen of dozens of pills and eye drops every waking hour.
Moore has been doing all he can to bring attention to the disease. In the documentary, Moore can be seen completing a 57-mile walk within 24 hours, dedicated to bringing awareness and support to the cystinosis community.
He believes more awareness about the disease is crucial in helping to raise money for research and he won’t stop doing all he can until a cure is found. Moore’s passion has moved him from being a parent on the sideline not thinking he could make a difference, to the president of the Cystinosis research Network (CRN) the longest standing active non-profit supporting cystinosis families worldwide.
One in 10 Americans are affected by a rare disease, so it’s important to bring attention to the issues surrounding them. Also noteworthy is the fact that many treatments developed for rare diseases have been repurposed, which is the identification and application of already approved drugs to treat new diseases.
On Tuesday, August 25, Clinton Moore, patient advocate and CRN president, will be available to talk about the documentary, the organization CRN, the disease and how to support those afflicted with the cystinosis