Why the Butterfly?

In many cultures, butterflies symbolize transformation, renewal and freedom. In others, they are considered the physical symbols of the human soul. As a result, butterflies have appeared in ancient mythologies, art, and literature for centuries. To us, the butterfly images on this website represent all of those things and more.  In fact, they carry a far deeper and more unique significance to us, thanks to a beloved patient advocate who made the connection so much more real.  

In developing this website, the Patient Advocacy team put a great deal of thought into the artwork that would appear throughout the site. The artwork and images needed to align with our goals as well as convey the deep sense of commitment we feel to the communities with whom we partner so closely. We felt strongly that it also needed to be representative of our team and of our mission. As we mulled over different pictures, one very meaningful image emerged as not just the top pick, but the only pick.

Several years ago, an artist and well known patient advocate named Helen Walker sent one of her original paintings to members of Genzyme’s Pompe team. A Pompe patient herself, Helen led the Australian Pompe Association as its president and was a long standing board member of the International Pompe Association before her passing in late 2012. Her painting, simply called “Butterflies”, serves as the foundation for this website. 

We could write volumes about the wonders of Helen, but simply put, to know Helen was to know the definition of perseverance. Her wit, her tenacity and her candor left a legacy that will remain with those of us who knew her always. Helen’s lovely and unexpected gift to the team years ago helped inspire the group in those early days. It served as a constant reminder that patient communities around the world were counting on us to ensure that treatment would one day be available to Pompe patients.

Her painting was accompanied by a description, an excerpt of which appears here: “The butterfly spends the greater part of its life in a cocoon, and then it escapes and flies off to start a new life. The different types and colors of butterflies represent our Pompe people from around the world. The lift-off signifies the hope and the freedom of life.”  The image went on to become a well-known symbol and source of inspiration within the company — we displayed it at meetings and talked about it during orientation for new employees.  It also helped light the spark behind Genzyme’s well known Expression of Hope art campaign. Helen’s painting is now permanently installed in the Genzyme Allston facility where all the original Expression of Hope images are kept—an image of Helen’s painting in the gallery appears below.

In addition to the meaningful connection to butterflies Helen’s painting provided years ago, we realized that we had yet another deep connection to this wonderfully complex and beautiful insect. Over the years, we have been privileged to attend many LSD and rare disease family conferences around the world. These meetings often include a ceremonial release of hundreds of butterflies, which most often serve as a remembrance for all those who have passed away to the disease. The releases are filled with love for those who have been lost and as a way to honor their memory. In this way, the butterflies fulfill their purpose of symbolizing the freedom and transformation of the human spirit.

So, we decided to use the butterflies as the anchor for our new website because at the end of the day, we are all here for the same reason—the promise of hope for the communities we serve. The butterfly reminds us to lift-off, as in Helen’s own words, towards “the hope and freedom of life.”