So, I may have told you, I am running the Boston Marathon to raise money for the National Organization for Rare Disorders and have committed to raise $2500 to support their efforts. What I may not have mentioned is that as part this experience each runner on the team will also being paired with a patient who lives with one of the 1200 diseases that qualify as rare. We will run on behalf of them, using them as inspiration and motivation and make a connection between our efforts and the people the funds we raise benefit.
On Friday, I learned that I will be running for a woman living with Gaucher Disease, a lysosomal storage disorder which affects the metabolic process within the cell. Patients’ bodies do not produce or only produce a limited amount of a protein that breaks down a certain lipid, which can cause it to accumulate in the liver, spleen and bone marrow, resulting in a variety of life threatening symptoms. It can be treated by Cerezyme, the first drug made at Allston Landing and the first process I learned when I came to work at Genzyme. Cerezyme, as well as some other treatments, replaces that missing protein and reverses many of the symptoms, affording them a much better quality of life.
I was reflecting on what it means to be running for this person during yesterday's run . I’ve always felt immensely proud of the fact that I helped produce a drug that made a very real impact on people’s lives. We don’t make drugs like Prilosec or Claritin; we make something that saves lives. This has always motivated me at Genzyme and now that I have an opportunity to get to know someone who directly benefits from my work, it will help motivate me to live up to my commitments.
In fact it already has: at the tail end of my 10 mile run (it was only supposed to be 9, but I made another wrong turn) I was running up the other side of Corey Hill, exhausted and legs screaming. I wanted to stop, I wanted to walk and I really, really wanted some water. I thought of this woman who was relying on me to finish 4 hills and 26.2 miles and the responsibility I owed her. It was enough to motivate me to reach the top.
On the way back down that hill, I realized that my focus has been on preparing for the Marathon rather than the reason why I am running in the first place. There are many more people who have no treatment for their rare disease and who rely on NORD to fund and advocate for research that will give them hope for a better quality of life. I’m glad that I remembered this in time to draw inspiration from it.
