For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in the form of a traveling art exhibit.
Based on coverage from the Gaston Gazette, at least 800 medical professionals and organizations, 90 families, and countless other people showed support for cystinosis through a personally crafted art exhibit from those within the cystinosis community. The featured artists ranged in age, the mediums they use in their work, location, and more, but they all have one universal connection—raising awareness for this extremely rare disorder.
Children will typically be diagnosed with cystinosis before the age of two. The condition causes cysteine (an amino acid) to build up in organs throughout the body, which, if left untreated, can cause kidney failure by the time a child is nine!
Bryan Stout is one of the artists who displayed his work this summer as the “Dream, Achieve, Inspire” will travel from the United States to Mexico to Brazil, and beyond.
“It’s very emotional. It’s beautiful. The tone of it is overwhelmingly positive. It’s inspired my daughter,” said Katie Latimore, executive charwoman of the Cystinosis Research Network and mother to a child with the disease. “It has opened [my daughters] eyes not only to cystinosis, but to the whole world. I really hope the community loves it.”
The pieces were a part of the Cystinosis Research Network’s 2015 CRN Family Conference in Chicago from July 16th to July 18th.
The exhibit hopes to bring recognition, and ultimately treatments, to countries who don’t currently offer them. Countries within Africa, the continent that claims 9 out of 10 of the world’s worst health care systems, are among one of the highest priority locations to bring cystinosis awareness and treatments.
In a world where art is used so often to make wealth, it’s nice to see this group come together and show their support for one another.
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