Participant Testimonials From the Original 2006 Program

The Canadian MPS Society’s Experience
Kirstin Harkins, Executive Director, The Canadian MPS Society

My Expression Of Hope Experience
Lateef L. Murdock, California, USA

My Experience
Pat Hand, USA

My Project Experience
Justine Crosby, Collaborative Artist, Massachusetts College of Art and Design

The Canadian MPS Society’s Experience
Kirsten Harkins, Executive Director, The Canadian MPS Society

When a child is diagnosed with MPS or a related lysosomal disease, the course of his or her life is forever changed, as is his or her family’s. Days become filled with worry and doctors’ appointments; nights become filled with more worry and sleeplessness. There is an overwhelming abundance of medical terminology to take in, and, eventually, a new reality to accept.

Parents of affected children for whom there is no treatment must come to terms with their children’s progressive disorders and learn to live for the moment. And parents of children for whom there is a treatment available often face long fights related to access and long term health outcomes– the future is filled with uncertainly. Life is extremely challenging for all families affected by MPS & related diseases.

The Canadian MPS Society was founded in 1984 to provide support to Canadian families affected with MPS & related diseases, and we were excited to collaborate with Genzyme on Expression of Hope in 2006 as it was a fabulous opportunity for our members to beautifully express their feelings about living with MPS through art and to share that art with the world. It was a chance for them to express their love, their joy, their hope – a positive and empowering experience in the midst of so much chaos and loss.

It was my great honour to attend the Expression of Hope Art Exhibit and Reception at Genzyme Center in Cambridge, MA on June 15, 2006 with two of my sons, Nicklas (who has MPS I) and Jansen. All three of our boys submitted art, as did many other Canadian MPS Society members, and we were both surprised and thrilled when Nicklas’s painting of a dragon was selected by an independent selection committee from the Massachusetts College of Art to be one of the pieces included in the traveling exhibition. So many incredible submissions were made by our members and we viewed them all with pride on the power point presentation at the exhibit.

It was incredibly moving to witness the varied creative expressions displayed at the exhibit in Cambridge and it’s been a pleasure seeing various selections from the exhibit at venues around the world over the past couple of years – I can’t imagine a better way for Genzyme to have celebrated its 25th Anniversary (and its 10th Anniversary in Canada).

Thank you to everyone who participated and shared their visions of hope. We congratulate Genzyme on this wonderfully inspiring project and look forward to having our members participate in Expression of Hope II.

My Expression Of Hope Experience
Lateef L. Murdock, USA

I really enjoyed my experience with the first Expression Of Hope project. John Giordano, the artist assigned to me, came up with the idea to use my hands as a basis for his piece. He reasoned that, because I can't walk, I have to use them in varying and unique ways. He wanted to convey the emotional experience of having hands that not only were used to grasp and move objects, but also provide stability, and in some cases, locomotion. It was a lot of fun and very interesting hearing his ideas and sharing my own. Everything flowed seamlessly and when we finally met in person, it felt as if we were old friends. And, when I finally saw the completed piece, I was floored. It actually exceeded my expectations. Which, were already pretty high to begin with. If I was ever offered the opportunity to participate again, I would do so in a heart beat.

My Experience
Pat Hand, USA

I participated in the Expression of Hope Exhibit to honor my father, Robert Hand. It had been 25 years since he died of heart and kidney failure, without ever knowing he had Fabry's disease. For years my family has been learning about biochemistry and genetics, but I wanted to remember my father's courage, strength, and good humor not his symptoms and failing health. With the art process I was able to shift my perspective to do this.

Making art, displaying it, looking at what other people did, and talking to people about it gave me power. And a way to step beyond the biochemistry of my situation. When I started, I thought---"How do you put 'hope' on paper?". I found it was the process of making and communicating that made me actually feel hope not the image I chose. When I attended the opening of the show I could tell other people were affected by the many expressions of power/hope from around the world, too. It gave them an opportunity to look at things from a different angle.

Some exceptional things about this opportunity to exhibit: All entries are shown online [everyone wins!]. All ages are encouraged to participate [I teach art to young children and one of my favorite entries in the first Expression of Hope was a dragon by a ten year old Canadian boy]. People from all over the world take part and the exhibit travels outside the USA. The exhibit is mounted, displayed and taken care of in a very professional and respectful way.

When I talk "Fabry's" with people---I choose what details to fill them in on---this exhibit gives me an option I didn't have before. The pictures and process touch on something universal and there is more understanding and less dis-ease.

My Project Experience
Justine Crosby, Collaborative Artist, Massachusetts College of Art and Design

The making of 2D works of art for the EoH project was admittedly both a blessing and a challenge. It was an opportunity to learn about these different types of LSD's, how these different women were affected in the performance of their daily lives, what it took for them to get through each day's unpredictable symptoms, and where they draw their strength from. They inspired me to focus on their courage, to represent them as I see them in their family and/or their community: a symbol of Hope. I feel that the art should reflect that even in spite of the odds, each woman is doing her most to succeed in maintaining faith for their future, and to continue to heal from their past. My only wish is to be as faithful to the truth about these compelling stories.

(For Vanessa's) In this collaboration, I was careful to examine the history of Vanessa's experience, where the teardrop represents her past, and is the root of the tree that is blossoming towards her future. The butterfly represents her transformation, the sunset on the ocean her place of peace, and the colors native to her country.

(For Jaqui and Sabina's) For Jaqui and Sabina, I sought to tell the story of courage they must face in their everyday struggles with Fabry. The lending hand for support, the egg shaped bubbles for their births into it, each one representing a different facet of living with Fabry: How it becomes transmitted, who is affected in their family, and the hope, courage, and spirit it takes for them to live through it.