"Expression of Hope" exhibit opens:
“I am ten years old and have MPS I. My painting of a dragon expresses the courage that everyone needs when they have MPS.” Artist Nicklas Harkins describes his life with Mucopolysaccharidosis I (MPS I) and his strength, along with the stories of others living with lysosomal storage disorders (LSDs), through a collection of inspiring pieces of art entitled, “Expression of Hope,” on display at the National Museum of Health and Medicine through March 2, 2008.
Lysosomal storage disorders (LSDs) are a group of approximately 50 genetic (inherited) disorders, sharing common clinical and biochemical characteristics. Individually, each disease is rare, but as a group, the prevalence of LSDs has been estimated from 1 in 5,000 to 1 in 7,000.
People with LSDs are either lacking or in short supply of particular enzymes that are found in the lysosome(a compartment of the cell) that contains various digestive enzymes as well as acidic materials. Because of this, molecules that are meant to be broken down by the missing enzymes build up within the lysosome, and can prevent the cell from working properly. Most LSDs are progressive and life threatening.
An opening reception at the museum welcomed patients, families and friends of the LSD community. Speakers included artists Grant Bowen and Ted Meyer representing Gaucher disease, both whose work is on display in the exhibition; Jack Johnson, president of the Fabry Support and Information Group; Dr. Roscoe Brady of the National Institute of Neurological Disorders and Stroke (NINDS) who has dedicated most of his research career identifying metabolic defects in lipid storage disorders such as Gaucher, Niemann-Pick, Fabry and Tay-Sachs disease; Dr. Cynthia Tifft, clinical geneticist with the Department of Medical Genetics at Children’s National Medical Center; Sara Collins, director of patient advocacy at Genzyme; and Rosina Cristalli, marketing director of the National Gaucher Foundation.
Sponsored by Genzyme, one of the world’s leading biotechnology companies, the 32 pieces of art featured in “Expression of Hope” were created as a means to generate awareness and understanding of the strength and courage of thousands of people worldwide living with LSDs. Numerous patient organizations from around the world became involved and encouraged their members to submit artwork that shares their feelings of hope, and explores the realities, perceptions, and experiences of living with an LSD.
“Each artist’s ability to create a beautiful image as a remarkable reflection of their own experiences as an LSD patient, or as an outside-observer of someone suffering from LSD is fascinating. Each work is a personal perspective and a window into the courage necessary to cope with the healing process,” said Adrianne Noe, Ph.D., the museum’s director. “Together these artists have identified a unifying theme which is truly unique--an appropriate exhibition for a museum that links healing to art.”
In partnership with the National Gaucher Foundation, an additional three pieces of art, including one scar mono-print by artist Ted Meyer, are on display in the exhibition. Meyer’s previous exhibition at the museum, “Scarred for Life,” featured 36 mono-prints of scars, accentuated with gouache (opaque water color paint) and color pencil.
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