Before I interviewed with Genzyme I didn’t know their mission or the passion its employees have to find ways to help people with unmet medical needs. I never realized there are more than 6000 rare disease; most of which do not have therapies or cures. What I realized pretty quickly is there are families among us that are struggling every day to learn what disease they or a family member might be battling.
I interviewed at Genzyme on Rare Disease Day. During my interview I learned that Genzyme does a relay from their Framingham site to their Cambridge location. When I got back to my car I promised myself that if I got the job I would run in that relay. One year later I ran the first leg of the relay.
Throughout my short time with Genzyme I have been fortune to hear from amazingly strong families who struggle every day with the challenges of no treatments or cure’s to help their loved ones. These people are inspiring as they tell their heart breaking stories. I’m amazed at how strong they are in the face of so such much unknown. How they advocate for others and bring a voice and memory to those they have lost.
This year I have taken the step to do even more. I’m running as part of the Genzyme Rare Disease Marathon team. I’ve never run a marathon but have been so moved and motivated reading the Genzyme Running team blogs and seeing the amazing ways people have gotten involved that I want to be a part it.
In my short time with the company; I’ve seen the hard decisions and tough choices people have to make. I’ve seen the struggles families go through when something like this impacts their lives. It is overwhelming, isolating and consuming.
I’m honored and humbled to have been selected to be a member of this team. I feel like it’s where I belong, where I can make a difference. Together with my my amazing super-duper, awesome family, supportive friends, and wonderful work colleagues I know I can make a difference and give these families HOPE!
There is a lot of work to be done. I've lots of training miles ahead to prepare for the 26.2. I’m excited to get to know my patient partner and the others on the team running to bring more awareness to such a deserving community.
What this is really all about is raising awareness about these diseases and money to support those who are still trying to get a diagnosis. Our team is raising money in support of Genzyme/NORD National Institute of Health (NIH) Undiagnosed Disease Program (UDP), which is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. Click on the link to learn more about this program.
I understand not all of you will be able to donate so I would ask that you support me in any way you can. E-mails of encouragement, texts in the early mornings to get me going during those cold winter runs or just checking in to see how things are going. If you are a runner lets connect and spend some time on the roads together. It may be the only way you get to see me before April.
If you want to follow the whole team and learn more about our patient partners you can do so through this blog, or our Facebook page, or Twitter. Click on the links to sign up for our sites.
Thank you for your support!