At Genzyme, we believe that when employees are able to hear directly from a patient about living with a genetic disease that as a company, and as individuals, we become more compassionate and committed. And as a result, we are able to do even more for our patients.
Recently, I was asked to invite a family to speak about their experience living with a genetic disease to a large group of senior Genzyme employees at a global strategy meeting. I have invited numerous amazing, articulate patients to speak at Genzyme over the years, but I had never been asked to invite an entire family.
For obvious reasons, the insights offered by families are very different from those of individuals. We know that family dynamics are complex, layered by the years with emotion and bearing witness to one another’s life experiences. Listening to a family tell of their very personal, shared journey connects us to ourselves, in our own roles as fathers, mothers, brother and sisters. Because we all know what it means to be part of a family, it becomes an emotional experience even for the listener.
I knew of one family in particular that I thought would be interested in sharing their story about what Pompe disease has meant to them. Graciously accepting our invitation, all four of them mother, father and two children – traveled to Massachusetts. Hearing this family articulate and share their very personal story was transformative for many people in the room. Without even trying, they opened their world to us–a crowd of 150 people–and allowed us the privilege of a glimpse into their lives.