When I run I typically leave the headphones and music at home as I like to use that time for thinking and reflecting. With all the training these days for Boston there has been plenty of time to reflect (we need something to distract from the freezing weather!). I have been thinking of ideas to write a blog post on for a month or so and was planning to use facts, figures, logic, to describe the importance of rare diseases, but ultimately it didn’t feel right, it didn’t feel from the heart. It didn’t feel personal. During my runs this week a new direction took shape, to speak to my motivations.
While everyone knows the important goals the team works toward for NORD, I joined the team a little over a year ago with a more selfish motivation: to fulfill a personal dream to run the Boston Marathon. So as not to mislead, it was important to me to help those with rare diseases, and that was a significant reason that I joined Genzyme, but it was primarily for my running goals that I joined the team. As part of the marathon last year I ran for my cousin, Sean, who has a rare form of Spinal Muscular Atrophy. I grew up with Sean and took it as an honor to run for him. I worked hard both fundraising and training and ultimately beat both my dollar and time goals, crossing the finish line with a sense of personal accomplishment.
Phil often talks about how it is more important to him to raise awareness and make connections than raising dollars, and trusts that if we focus on the first items the last will follow. I did not fully agree with this last year; it seemed clear to me that raising money was our true goal, the best way to get effective results, but this year I see the truth in those words. This year is different.
This year I decided to have a patient partner selected for me and am paired with a young woman named Amanda who has PNH. Most all of us have heard of high performance athletes ‘blood doping’ (Lance Armstrong is a famous example), where the athletes use methods to boost the red blood cell count to gain more energy during a race. People with PNH have the opposite happen. They lack a special protein within their red blood cells that tell the body “hey, just a red blood cell here, no need for alarm, carry on.” Lacking that identifier, their immune system destroys the red blood cells, with various resulting symptoms such as low energy and high risk of blood clots.
Amanda was a cross country runner in college and generally a very active person. We have gotten to know each other pretty well over the last few months and even now she has a tremendous amount of positive energy overflowing from her in spite of this fatigue she has to live with. Her excitement for being part of the team is a huge boost to me, from keeping up with my training to demanding photos from Rare Disease Day so that she can visualize how the day went. Today Amanda is the newly appointed Peer Support Officer for the PNH group (a tremendous responsibility for people with rare diseases) and a track and field coach for the local high school team, and she is a true leader for both.*
Ultimately I decided to write this post in case there were others like me who are on their own transformation. I have transformed this year from running for my own reasons to running to be connected to the Rare Disease community and to raise awareness for the cause. My focus these days is on connections and awareness and I work hard to spread the message through work, my classmates at graduate school, and my friends and family.
Recently I had a classmate attend a fundraising event and I offered to send him the link to our running blog. He agreed (how could he not?), and then next week we spoke more on the event and I asked him if he had read any of the patient stories. He hadn’t, and I promised to send him my favorite (Brianna’s story). A week later he told me about his amazement reading it, and how motivating the video was (if you haven’t seen it, be sure to check it out). My point is: it wasn’t the initial fundraiser that changed his lens, or clicking through to the blog. It took some time and commitment both from him and me until the message truly sank in and became a part of him. Let’s just say that I could relate.