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Running for Rare Diseases

Posted by Chrissy Horan  March 26, 2014 07:52 PM

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A few years after we graduated from college, one of my best friends and former roommates mysteriously and frighteningly started losing her hair. It was odd because she was a 27 year old woman in good health and no reason to be losing hair. It was frustratingly scary because no one could tell her why or what was wrong. She travelled across to country to see specialists. Yet it took probably a year for her to be properly diagnosed with alopecia and treated. And happily she has her beautiful long dark hair back.

Years ago when my friend was dealing with this, I had not heard of NORD, the National Organization of Rare Diseases. I have since learned of the organization and more recently learned about the team running the Boston Marathon and fundraising for this cause.

Since 2008, members of the Genzyme Running Team have been paired with rare disease patient partners, and devote months before the Boston Marathon to training, raising awareness and fundraising. Genzyme has been a longstanding partner of NORD, and recently the Genzyme/NORD NIH Undiagnosed Diseases Fund was created, in part due to the fundraising efforts of the Boston Marathon team. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program.

The Town of Ashland supports Team Genzyme by providing them with the marathon bibs that allows team members to fundraise for NORD. This year, the team is the largest ever at 30 runners, with several qualified runners and runners who were unable to finish the race last year returning with bibs in addition to 15 runners running with Ashland bibs.

In addition to the funds, the Team also raises awareness about the NORD and its services. Once a year, on Rare Disease Day, the Team organizes a relay run that travels between all 4 of the Genzyme offices in Framingham, Waltham, Allston and Cambridge. Employees can run a leg the relay, with patients, family and friends invited to join the last leg.

Team Genzyme_Run

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At each office are informational sessions and materials to educate others about NORD and rare diseases, as well as fundraisers for the marathon team, like bake sales.

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The runners from Team Genzyme, like many other charities, recognize their opportunity to run can also be used to raise funds and awareness for a deserving organization. With 36,000 runners on the course this year, you may not see all, or any of these 30 runners in the sea of marathoners, but know they are out there channeling their passion to run to help others with rare and undiagnosed diseases.

If you would like to donate to NORD on behalf of Team Genzyme check out their team fundraising page here.


As always, let me know what you think and what’s going on in your running community. Post comments here or email me at RunAlongBoston@gmail.com.

This blog is not written or edited by Boston.com or the Boston Globe.
The author is solely responsible for the content.

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About the author

     Chrissy Horan has been running around Boston and nearby neighborhoods since 2000. An athlete through high school and college, she has found the running community in Boston to More »

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