Watch the video story about Running for Rare Diseases Team coming to Paris.Â
For over two years now, Emma and I have pursued a â€œWe Run Togetherâ€ campaign, running many miles together virtually. This includes during last yearâ€™s Boston Marathon, when Emma was my patient partner, representing the Gaucher disease community, and supported my race, by running at the same time, from her home in Germany. This year, on Sunday April 12th, we finally had our first chance to run together in the same race, on the same day, and in the same beautiful city. We participated in the Paris Marathon, joined by 36 other enthusiastic runners. Our team included France based employees from Genzyme/Sanofi and members of a local lysosomal storage disorders organization, Vaincre les maladies Lysosomales.
When we individually signed up for the race last fall, we never expected that such an incredible group would come together, running in Paris for rare diseases. It was an extra special moment to be a part of, as our team stood as one, near the Arc de Triomphe on the Champs-Ã‰lysÃ©es, waiting for our 9:30 AM race start.
Emma and I truly ran the Paris Marathon together, over the entire 42.195 km distance. With the bustling of the crowds, at some water stops we would get abruptly separated, but always managed to quickly reconnect. The patches of bright orange on this yearâ€™s Running for Rare Diseases shirts, made it easy for us to quickly find each other, even in a field of 40,000 runners. With a place on our shirts to write the name of the person we are running for, Emma and I decided to write each otherâ€™s names. It was a thrill to hear both our names cheered many times as we ran the streets of Paris, always within earshot of the other. Just after 1:30 PM, we proudly crossed the finish line, hand in hand, together.
During our whirlwind visit to France, we also had the great opportunity to share our running story and the uplifting story of the Running with Rare Diseases team, with employees at both Genzyme and Sanofi sites. This special trip was a long time in the making, but as we said goodbye at the train station, we both knew that weâ€™d be continuing our journey. No doubt, this was just the start of Running for Rare Diseases in France as well. The Paris Marathon represented a tremendous team effort from all our groupâ€™s organizers, runners, and many supporters. After completing the race, it was inspiring and emotional, for both Emma and I, to hear from many on the team, that they had just completed the longest distance theyâ€™d ever attempted, and also to see everyone proudly wearing shirts that read, â€œIâ€™m Running for Emmaâ€ and Vaincre les maladies Lysosomales. This coming Sunday, just three weeks since Paris, Emma and I will be putting on our racing singlets again, as â€œWeRunTogetherâ€ from the Providence half-marathon to the Wings for Life challenge in Munich.
Good luck to the entire Running for Rare Diseases team at Providence this weekend!
Check-out the story Elaine Benton wrote in the Huffindton Post about our Paris run.
Also, special mention to my friend from Boston, Nilesh, who was there to cheer us on in Paris, snap our portraits , and had on hand extra fluids, to keep us hydrated on a hot race day.Â