A few days ago, I completed my 1000th mile as a member of the Genzyme Running Team with fellow team members Jessi and Phil. Over the past two years through our weekly Tuesday morning runs in Cambridge, training runs and a variety of races, the three of us have run more than 1000 miles with other members of the GRT. Upon reflection, it made me so proud to reach this accomplishment together with Jessi and Phil. On our run, we took a picture to commemorate our accomplishment. After the run, as I looked at the picture it occurred to me, how proud I am to be part of this running team. Running has brought Phil, Jessi and I together. We all work for different parts of the company, Jessi in Corporate Communications, Phil in Manufacturing and I am a scientist in Research and Development. Running has not just brought us together, but also given us a way to make connections with the rare disease community. This is one of the basic fundamentals of the Running For Rare Diseases Marathon Team and we have made so many connections over the past 7 years.
Phil, Jessi and I during our 1000th mile run
Although the theme for this yearâ€™s Boston Marathon was We Run Together, itâ€™s actually been an integral part of the Running for Rare Diseases Team since 2010. That was the first year when runners were paired with rare disease patients.Â Itâ€™s been an amazing evolution of the team and this year we had more than 30 patient partners for the runners on the Boston Marathon Team. My patient partner this year was Emma. Even though the marathon is over, the connection between us is only growing stronger. This Friday, June 20th, Emma will be running in her first 100 km ultramarathon and I will be running with her as she did for me when I ran the Boston Marathon back on April 21st. I first met Emma on February 28th, 2013 during Rare Disease Day and itâ€™s been amazing to see the friendship grow because of our shared passion for running and advocating for rare diseases.Â Since that cold winter day in Boston, Emma has run her first marathon, her first 50 km ultramarathon and this Friday, her longest distance target yet, 100 km. Although we were fortunate enough to meet in Germany last fall, after we both ran races, I am looking forward to the day when we can run in a marathon together, in the same city.
Emma, running to the finish
On Friday, Emma will be running for Elaine Benton, who is also living with Guacher Disease. Emma has suggested ten different ways to support her run. I hope you too will consider being part of this initiative. Take a look at Emmaâ€™s blog, share the story or plant a rose. #WeRunTogether
Roses, Emmaâ€™s favourite flower