“Dream, Achieve, Inspire” International Artwork Showcase Unveils Rare Disease Patients’ Creativity

July 7, 2015

The Cystinosis Research Network (CRN), a Chicagoland-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. 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.

Miriam Narvaez from Mexico poses with her painting included in the “Dream, Achieve, Inspire” exhibit. She was diagnosed with cystinosis at 10 months old.

“The exhibit is designed to bring artists with cystinosis together to see each other as beautiful and creative. The worldwide participation has been overwhelming!” says Katie Larimore, Exhibit Chairperson.

The biennial event 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. In addition to these essential conversations, raising cystinosis awareness and advancing access to life-changing treatment is top of mind. Mrs. Larimore said, “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.”

lee knaus

Floridian, Lee Knaus, is an artist by trade. He is living with cystinosis and aspires to have his own art studio.

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.

Event Details
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

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