Rare Disease Community Expresses Hope Through Art

Genzyme launches second worldwide art program

When Genzyme first created the Expression of Hope program in 2006, the idea was simple: provide a forum for those affected by lysosomal storage disorders (LSDs) to shine a light on these rare genetic diseases through artistic expression. The results were profound. More than 150 patients, caretakers and relatives of those affected by LSDs submitted artwork as diverse as the artists themselves, including paintings, etchings, mixed media and photographs. Taken together, the collection tells the poignant and inspirational story of obstacles overcome (see video below).Sponsored by Genzyme and in collaboration with patient groups worldwide, Expression of Hope is a global program that invites people living with LSDs or caregivers to submit artwork that shares their feelings of hope or their experience living with a rare disease.

Without treatment, LSDs are often progressive, can affect multiple systems, and impact quality of life or be life-threatening. There are more than 40 diseases classified as LSDs, rare genetic diseases caused by a deficiency or malfunctioning of a specific enzyme in cell lysosomes. While individually each of these diseases is extremely rare, grouped together they affect one in about every 7,700 babies born.

“I am happy to be involved with Expression of Hope because I feel so hopeful and thankful about my future,” said Linda Rubenstein, who has Gaucher disease. “I am pleased to raise awareness of rare diseases and hope it will give others who are first learning of a rare disease the confidence that they too can have a future.”

Genzyme also partnered with the Center for Art and Community Partnerships at Massachusetts College of Art and Design (MassArt) in Boston to create art that represented an artist’s individual collaboration with a person living with an LSD. The artists spent hours collaborating by phone and video conference with people living with LSDs to create 14 pieces of art. They shared videos, favorite objects and music so that the artists and subjects could work together to decide how best to capture and express the essence of each person’s unique experience.

“My attempt to portray Vanessa’s struggle with Gaucher disease required great understanding and intuition. I hope I was successful and am grateful for this opportunity to take part in such an intimate experience,” said Justine Crosby of MassArt.

Artist: Miriam Stoerchli, Fabry patient from Switzerland	Artist: Alice Boynton, Gaucher patient from the United States	Artist: Tanneke van der Linde, Pompe family member from The Netherlands

To share the artwork broadly, a worldwide travelling exhibit of 32 pieces was chosen by a panel of experts from MassArt - 18 that were created by members of the LSD community and 14 collaborative pieces. The artwork was chosen based on the technical and emotive quality of the art along with its ability to infuse the viewer with insight and appreciation of the hope and spirit of the person portrayed. The exhibit began in Lisbon and then travelled to 13 sites in eight countries around the world. At many sites, people living with LSDs and their caregivers appeared in-person to share their own experiences and to inspire others in the community.

“The positive response to the first program from participants around the world was remarkable,” said Jamie Manganello, associate director of patient advocacy at Genzyme. “Our vision is that all those who experience this art will not only be inspired and moved by the powerful expressions of the human spirit that the pieces reveal, but will also have increased awareness of Lysosomal Storage Diseases.”

The Expression of Hope exhibit will be permanently housed in a new gallery at Genzyme’s manufacturing facility in Allston, Mass., where the company produces treatments for several LSDs. All of the submitted artwork is featured on the Expression of Hope Web site accompanied by information about the artist.

Driven by Expression of Hope’s success, Genzyme has officially begun the Expression of Hope II: Inspiration through Art. To learn how to become involved in the program or to submit artwork, please visit http://www.expressionofhope.com.