The Positive Impact of Patient Partners during the Boston Marathon

Yesterday, our team completed the first of two marathons along the Running for Rare Disease journey this year. The Boston Marathon is the super bowl of marathons. The one every marathon runner aspires to tackle. We were lucky enough to participate not only as runners, but with truly important patient partners who were critical throughout this entire experience.

As you all know, the weather added a curve ball yesterday and made race day an even bigger challenge. Heavy rain and a steady 20-30 mph head wind only added to the challenge. On the bus ride out to Hopkinton, Phil gave us fantastic advice about the days run, considering the added weather factor. Put your PR, time goal and pace aside. Enjoy the day. Make it the best memory you can. High-five every kid, thank the supporters, soak up all the support and phenomenal cheers from Welsley College, to Boston College, Cleveland Circle all the way to the Boylston Street finish. With every mile the challenge of the race getting harder and harder and needing to feed off the energy and support of the crowd. It was very easy to follow this advice.

We have written and spoke alot about the importance of our patient partnerships throughout the training. The 500~600 miles of training to necessary to put in, to prepare yourself for running a marathon was certainly much more rewarding having a patient partner. The support we have all experienced as runner over the past months has been truly fantastic. 

One aspect of the Boston Marathon which makes it so special, and maybe under valued is how much this race is part of the culture and history of the various towns in Mass. The crowds lining the entire race, even the half mile from athletes village to the start line were staggering. The level of support, particularly in yesterdays weather was fantastic and overwhelming. In Phil’s talk on the bus, he mentioned feeding off the energy from the crowd, and how much we would need it. Again he was right. By mile 22 my quads were burning and tight from all the downhills, my pace slowing. The crowds were growing, getting louder and showing tremendous suppport.

Race day: The bibs for Boston are all numbers, except for the elite racers who went off first. Ours were no different, however our team agreed to write the names of our patient partners on our singlets.

Sam is my partner. I have written about his Vanishing White Mater disease previously. Like the rest of my team, I wrote his name in big bold letters across my singlet. A subtle reminder who I was running for.

I dont think any of us realized just how impactful this decision was going to be until the race started. From the start of the race, crowds were yelling Sam’s name, seeing it on my singlet, and cheering for Sam. I may have been running but I cannot think of a better way to have him with me during every stride of the marathon. In fact it seemed with all the cheering of the crowds, when people saw his name, the cheers and encouragement grew even louder. It was so much more personal, and a constant reminder why I was doing this. There were a few points in the race where the crowds were getting deeper and the energy peaking from the crowds became incredibly energized showing support for the runners. It was hard not to feel like a rock star, hearing so many people calling Sam’s name. In return, I probably gave enough high-fives to fans to last a lifetime!

Running Boston was a fantastic experience but would never have been what it was without Sam with me throughout this race. Without his knowledge, he helped the crowd feed me as much energy I needed to finish the race strong.

I would like to thank the partners for their important role in this event and building our partnerships through this community.