Rare Disease Day Relay 2014

Back on February 29th, 2012, I was in Allston for a meeting and brought along my camera along to try to snap a few shots of the employees running the final leg of the inaugural Rare Disease Day Relay from Framingham to Cambridge. I’d been involved with the Running for Rare Diseases team since 2007, helping with the web site and silent auction, and photographing runners as they passed mile 19 of the Boston Marathon near my home.

After the group left the parking lot to head across the Western Ave bridge, I hustled out the back gate and lumbered across the River Street bridge, arriving on Memorial Drive quite winded with about 5 seconds to spare to set up take this shot of the runners as they braved the snow on the journey into Cambridge.

It was an audacious goal for the running team to pull off the huge logistical challenges to make the event a success. I was inspired by the passion of the team as well as my total lack of fitness getting across the River Street bridge.

I began exercising and came out to watch the team effortlessly finish their long training run and then trailed them along the 2012 Boston Marathon course. Sports photography lets you see things up close — things like Kai coming off the sideline to run 12 miles into Boston with her patient partner in the heat. It was an inspiring day.

Fast forward a year later in 2013 I was a Running for Rare Diseases team member and marathon hopeful. I trailed the relay with my camera (by car) from Framingham to Cambridge and was able to attend the Waterford to Framingham “hand off” in Framingham and hear Emma Rooney tell her story as a Gaucher patient. Having worked in the manufacture of rare disease therapies for 16 years, nothing could be more uplifting than seeing her lead the relay along the Charles River.

Friday marked the third annual Rare Disease Relay and I was again able to trail the runners along the course and listen to the patient stories. Photos from the day are in this facebook gallery with highlights in the YouTube video below, set to David Meeker’s remarks at the close of the day.

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6 Responses to Rare Disease Day Relay 2014

  1. Emma R says:

    It was such a beautiful day to be part of last year! I was deeply touched by the opportunity to talk and especially to RUN holding the torch. It’s a great feeling to still be connected and to get your great capture of this year’s activities. Your photos are gorgeous Jack (especially fun to catch a glimpse of the banner that has me and Phil)! Congratulations to everyone who made the day a success.

  2. Dean Suhr says:

    Thank you team genzyme for your support for those with Rare Disease … on the street, in the snow (and ice), in the lab, and most especially in the clinic!

    Dean Suhr
    MLD Foundation http://MLDfoundation.org

  3. Dean Suhr says:

    Thank you team genzyme for your support for those with Rare Disease … on the street, in the snow (and ice), in the lab, and most especially in the clinic!

    Dean Suhr
    MLD Foundation

  4. Tara Notrica says:

    What an incredible event the Running for Rare Diseases Team has participated in! Thank you for making the Rare Disease Community a better place.

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