The 2016 Boston Marathon was pure misery: My feet hurt, my knees hurt, and with the gels I was taking during the run, my reflux was acting up, so my chest hurt and I felt nauseated for almost the entire race.  My training was derailed once by the flu and more recently by a knee injury. I only ran a couple of times since my long run 3 weeks prior, and a little voice in my head was telling me that I shouldn’t have even gotten up that morning.  It was really hot, and the hills were a lot steeper than I remembered them during my mid-winter training runs…

…and yet this was one of the greatest experiences of my life, surpassed only by my wedding and the birth of my daughter (I would include the day of my dissertation defense, but that was also the day I found out that my beloved Gia-Gia had died).


The morning started with our team meeting at the Genzyme site at Allston Landing in Cambridge. Breakfast was had, pictures were taken, and excitement was building.  We got on the bus, and our Team Leaders Phil and Kai talked to us about the race. Phil discussed the fact that it is practically a perfect day, albeit a little hot. There would be no excuses for not meeting our time goals, but then he said something unexpected for those running Boston for the first time…”forget your time goal”.  He went on to describe the difficulty of the course, and the pure enjoyment that will come from “taking it all in” and “feeding on the crowds energy” and especially the time some of us will spend with our running partners on the course, in my case, Max!  Given my knee injury and lack of training the last few weeks, so much of my pressure and pre-race jitters were relieved, and I gave myself permission to take it easy and enjoy the race.

The race was so well organized, thousands of runners moving through the Athlete’s Village to the corrals, the excitement at the start, the first few miles which felt absolutely wonderful. The discussion among runners about the pace, the people clearly going out too fast on the steep Hopkinton downhill (was I one of them?), the absolute energy from the fans along the route. The hilarious signs:  “The Kenyans are Drinking your Beer at the Finish”, “You can do it, random stranger!”, etc.)

For those of you who don’t know, there is a tradition at the Boston Marathon where people write their names on their shirt or singlet.  The Running4Rare team started our own tradition. Instead of writing our name, we write our partner’s name.

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In my case, I was running for both Max and Christian so I wrote both their names. It took me a little while, though, to realize that anytime someone yelled “Go Max!” or “Go Christian!” they were talking to me! When it finally hit me, I had a huge surge of energy… I really felt the power of the partnership! I could almost feel Max and Christian carrying me through some of those difficult miles…. “Go Max!”, “You can do it Christian!”, “Run Max!”. So many times during the race, especially at the hills at Newton, and Heartbreak Hill, I would fall back into a fast walk, then someone would yell “Go Max”, and it was as if they were giving me power, and it would be enough to get me running again, which would be met with more cheers from the same people, because they knew their shouts had an effect!

The highlight of my race was meeting Max, Jonathan, Erin, Donna, and the rest of Max’s family near mile 14. They were in the Running4Rare shirts, and they spotted me before I spotted them. Hugs and photographs, Max’s smile, Jonathan and Erin’s palpable gratitude, the words of encouragement from all the family, these are memories that I will treasure always.

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A half-mile or so down the road were the rest of the NORD/Runnig4Rare support and some partners. A few more photographs were taken and I was on my way to complete the next half of the race. This was hard… my knees were really hurting, and my energy was diminishing, and I felt that I was overheating. I wasn’t sure if I was over- or under- hydrated, so I skipped a couple of water stops. It seems, though, that the course gives you what you need. At some point I was running with my teammate, Katherine, and she was complaining about knee pain as well. We stopped at a medical tent to get ibuprofen, and they told us they do not supply it. Disappointment, but a little further down, right before Heartbreak Hill, a little girl was giving out advil! Further down, some more kids were giving out popsicles. My immediate needs addressed, I was able to (mostly) run the remainder of the course!

Getting closer to the end the power of the cheering crowd carried me the final miles. I felt good; I had huge sprints near the finish. I kept holding myself back for fear of injuring myself in the final miles. My wife and daughter had arrived at the Park Plaza hotel near the finish and were waiting for me. When I turned left on Boylston Street and could see the finish, I knew I would make it. In these long races, I usually have some reserve energy to sprint… I’m pretty sure that this day I had nothing, nothing more than light jog to the finish… it was the first time I heard my name through the PA, though it was slaughtered by the speaker (with a public apology). I just smiled and waved my hand as I crossed the finish on my way to the water, medal, and, with the realization that I finished, and I finished successfully with no injury!

Somber Thoughts: So there I was, with my medal, my blanket, and my bottled water, walking with my iPhone trying to figure out how to get to the hotel when it hit me; something horrible happened here 3 years ago. In my fatigued and weakened state, I could feel a dark cloud moving in, and starting to weigh on my soul. I could feel the fear, almost hear the screams. I wasn’t there, but many of my friends and colleagues were, notably, Amy, a woman from my group that was just one block from a bomb with her children, waiting for her husband to finish. I started tearing and choking up, and had to push those thoughts away, lest I wind up a puddle on the ground after the race. What a contrast that must have been, with all the positive energy that most of us feel through this event. I realize though, that is how we differ. I saw so many runners that had lost limbs 3 years ago at this year’s event, running! I saw a community of people who are not going to let anyone take away the Patriotism of the Boston Marathon. I realized that those who want to do evil will never succeed in crushing the human spirit, and that we will meet any challenges we face with courage, kindness, and above all, strength. For me, I now truly understand “Boston Strong”!


I ran, and I finished, and I was carried by a boy named Max, who has his magic wand strapped to his waist ready to cast a spell and give me strength, and a young man named Christian, who walked a Marathon distance in my honor.  With the help of all of our sponsors, we raised over $6000.00 for Rare Disease Research.  Many people are telling me that my feat was amazing, but compared to the Marathon of doctor’s visits, medicines, insurance issues, pain, fear, uncertainty, lack of support, surgeries, recoveries, etc. that people affected by rare disease face, this is really a small accomplishment, and I promise to do much more, both in my own research, and by advocating, running, and fundraising! Thank you all, again, who donated, who gave words of encouragement, and who got the word out to others. Thank you, Erin, for all of your help with fundraising. Many thanks to Cat Ahmed and the FH Foundation for support and encouragement. Thank you to my wife and daughter for understanding all the missed Saturday breakfasts and for all the love and support. Thank you to my friends, colleagues and family for words, texts, and shouts of encouragement!  Thank you to the Running4Rare Team, to Phil and Kai especially. Thank you to Roche Bros. and Panera Bread for donations of baked goods to our Running4Rare Bake Sales.  And finally, thank you, Max and Christian for being my partners for this race!

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4 comments on “RACE COMPLETED
  1. Maureen McLaughlin says:

    What a wonderful post. You definitely captured the events and emotions of the day. I’m so honored to have been a part of the team and to know all of my fellow runners finished the race. Although I’m sure we all have stories to tell about the heat, hydration, hills, etc. I’m sure none of us would trade the experience for anything. Running for Rare and Boston Strong are two phrases I yelled many times to the crowd Monday!! What a special and powerful day we all had!!

  2. Anne OConnor-Smith says:

    Beautifully said.

  3. Anne says:

    I love this Kyriakos!

  4. Erica says:

    It is a race like no other for both you guys the runners and us the Patient Partners. – It’s as if we have you, the runners, running a path, a mile (26.2miles) in our shoes.
    Together we as Patient Partners and Runners celebrate great victories few can truly understand.

    Thank you!

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.