Jen was running toward us, her arms spread out like wings. We had been waiting for this moment for hours, for Jen to run on by. But she didn’t. She sacrificed some seconds from her time to stop and give us all hugs.
That’s just like Jen Tedstone. So full of love and energy that this mother of three young children would train for months to run in her first marathon, raise the most funds of any of her teammates (who all raised a ton!) for NORD, all while working full-time as a scientist-researcher for Genzyme.
It was exciting to see Jen in the middle of her feat, her first marathon, the Boston Marathon 2013. She was running for Christopher and my son Ben. Christopher and Ben have congenital hyperinsulinism (HI).
We were there in Wellesley, at just about the halfway point of the race, to cheer her on, with thirteen miles still to go. Jen was part of a team of runners, the Genzyme team, each running for a patient, to bring awareness to a little known disease, to shed light where usually there is darkness. She fundraised for all rare diseases. The funds she and her teammates have raised will be used to improve early diagnosis of all rare diseases. The team fundraises for NORD, the National Organization for Rare Disorders. Early diagnosis is key to a better life for so many rare disease patients. In the case of HI, early diagnosis is tremendously important: the difference between a life of struggle due to neurological impairment and a life free of neurological challenges.
Unlike her teammates, Jen was running for two patients, not one. Originally, NORD had contacted me to see if my son Ben would partner with Jen. Jen wanted to partner with a child. Ben still had enough child in him at sixteen to fit the criteria, according to Stefanie Putkowski, the amazing NORD project liaison for Genzyme. When I learned that Jen was from Hopkinton, the town where the Marathon begins, I asked if Jen could also run for Christopher who is seven and has HI. Christopher and his family also live in Hopkinton, where the race starts.
Jen and Genzyme were thrilled to add Christopher to the roster of patient partners. The Hopkinton connection was huge. Hopkinton’s identity is defined by the fact that the race starts there. The coincidence of runner and patient partner living in the same town, and not just any town, but the town of Hopkinton, where it all begins, created a very meaningful bond between Jen and Christopher and their families. For months before the race I received updates and photos from Anne and Ed, Christopher’s mom and dad, about the upcoming marathon. The Johnson family was there every step of the way, providing Jen with support for her training and amazing baked goods made by Anne for the whole Genzyme team.
Two days before the Marathon, on Saturday evening, Genzyme had a celebratory dinner, at their Allston facility. It’s a very impressive building, with enormous windows that look out on the Charles River. They make Cerezyme at this facility, a medication that has changed the lives of Gaucher’s patients, making it far more possible to live a normal life with this condition. It was at this dinner that Mark (my husband) Ben and I first met Jen and her family. I was already acquainted with the Johnsons, but Mark and Ben were meeting them for the first time as well.
At the dinner, there was super healthy and delicious food for the runners and the rest of us, like chicken with roasted fennel and whole carrots. There were also speeches by Genzyme team members and NORD, capped off with a tour of the facility. There was so much emotion in the room. Genzyme runners, including Phil Madeira who was the founder of the project, spoke about the relationships they had formed with patient partners. There was even a speech made by a patient partner with a rare disease who was now a member of the Genzyme running team. Through these very heartfelt and emotional speeches it was obvious that partnering with actual patients for the Boston Marathon added a whole layer of meaning for the Genzyme employees. It wasn’t just about raising the money for NORD; it was also about forging connections with patients, understanding their lives and empathizing with their experiences.
Sunday was Hopkinton Day. The patient partner and runner families bonded over a yummy indoor barbeque at Ed and Anne’s. Then we went into town where Jen, her kids, Anne, Ed and their kids introduced Mark, Ben and I to the infamous starting point of the race. Already, townsfolk and tourists were gathering. The excitement had begun.
Monday morning we met the Johnson family in Wellesley to watch the race with the other patient partner families and members of the Genzyme and NORD staff. The day was gorgeous, blue sky, cool and crisp temperature. The first runners to get to the halfway point were the wheelchair
runners who left the start first. The athleticism of those in front was something to behold. It was so moving to watch people who have to deal with serious disabilities competing and displaying so much physical talent. The last of the wheelchair racers were in some ways even more powerful to watch. These folks might not have as much strength, might have more challenges, but that didn’t stop them from giving this race their all. When the elite runners flew by next, the men than the women, their speed was not to be believed. After the elite runners came thousands and
thousands of people running for causes, every cause you can imagine. There were blind runners with guides running with them, autistic runners surrounded by guides. There were parents running while wheeling disabled children in wheelchairs. When the Genzyme runners started to run by we went crazy with cheers, our most memorable moments were our midpoint embraces with Jen.
There was so much goodness at the Boston Marathon April 15, 2013. When I heard the terrible news of the tragedy at the Finish, my fantasy was that all the runners would have run to the halfway point and then continued running backwards from there, running all the way back to Happy Hopkinton, still completing their marathon while staying out of harm’s way. Unfortunately, it is only a fantasy and our hearts go out to the families of those who lost their lives and to those who were injured at the Finish. I will forever cherish our beautiful experience being a part of the Running for Rare Diseases Genzyme NORD team. I am sure the team will be stronger than ever next year, as is our collective resolve to support individuals and their families living with rare diseases.
-Julie Raskin
