Milton Man with Rare Disease Finds Inspiration in Art

July 3, 2015


The Cystinosis Research Network (CRN), a Chicago-based 501(c)(3) charitable organization, is hosting its family conference in Chicago, Illinois from July 16 to July 18, 2015. This summer’s event features the first global gathering of art from over 100 artists from 30 countries who are affected with cystinosis, a rare, genetic-metabolic disease.

Milton resident, Eddie Langley is among the talent launching the largest collection of artwork created by cystinotics. In addition to demonstrating their creative abilities, the artists aim to make a statement of awareness and strength for those living with cystinosis. According to Exhibit Chairperson, Katie Larimore, raising awareness on an international level is vital. She says, “In countries such as Iraq, Venezuela and Thailand we hope to gain recognition for the patients there and make vital medicines available for the first time.”

Chicago is the first stop for the “Dream, Achieve, Inspire” art show with cystinosis support groups in Brazil, Mexico, Spain, and the United Kingdom lining up to share the unprecedented collection. The biennial conference unites cystinosis families and leading experts, doctors, and scientists to discuss critical topics from medical research and management techniques to social challenges and insurance coverage.

Cystinosis is a rare, genetic, metabolic disease impacting approximately 2,000 people worldwide. Cystinosis causes an amino acid, cystine, to accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without treatment, children with cystinosis can develop end stage kidney failure at approximately age nine. This disease has devastating outcomes when untreated. The CRN is comprised of family, friends, and medical researchers dedicated to finding a cure, developing treatments, and enhancing the quality of life for those affected by cystinosis.


Who: Artists with rare disease called cystinosis

What: Travelling art exhibit, “Dream, Achieve, Inspire” debuting at the Cystinosis Research Network Family Conference

Where: Chicago, Illinois. The Magnificent Mile Doubletree by Hilton

When: July 16- 18, 2015


For more information, contact Christy Greeley at [email protected] or 847-204-6004. Follow up interview and photo opportunities available. You can find the CRN on Facebook at, Twitter @CystinosisCRN, and Instagram @CystinosisResearchNetwork.

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