I originally started writing this blog days before Boston Marathon 2013, and was planning to post it after returning home. I’m glad that I hadn’t posted it beforehand, because the terrible events at the finish line have magnified my admiration all the more for a particular group of heroes – two groups of individuals who formed one amazing team.
The Genzyme Running Team, one half of the Hero-Group, has now run the Boston Marathon for the past six years. Between each runner’s personal appeals for donations and Genzyme’s matching gifts program, they have raised over $200,000. These funds go to NORD to help people with rare disorders through programs of advocacy and research. The rare disease community is the inspiration for the runners.
The majority of the Genzyme runners live in the Boston area, with much of their marathon training taking place before daybreak, during below-freezing, dark and snowy Boston winters. Each runner is paired with a “patient-partner.” When the training gets really tough, the runners envision the patient-partner in whose honor they are running – providing enough inspiration to fuel an army of runners.
In many of their blogs leading up to this year’s Marathon, the Genzyme runners have described their arduous training as a metaphor for the uphill battle many with rare disorders face on a daily basis.
In fact, two members of the Genzyme running team each has a serious rare disorder.
The rare disease patient-partners – those individuals and their family members who joyously participate on the sidelines – comprise the other half of the Hero-Group. Most were able to go to the Marathon this year – traveling to Boston from different areas across the country — to cheer on their running-partners and the entire team. They and their families willingly and publicly told their stories and shared their experiences, all for the sake of the entire rare disease community.
Enduring bonds are forged between these patients, families, and runners – bonds that will last forever.
I know several of the patient-partners and their families who participated this year, and I was aware that some are currently facing dreadful issues. One set of parents is beset with fear due to their child’s recent complication from her rare condition. Another parent lost a beloved little boy just months ago. One adult patient with a painful metabolic disorder has undergone numerous surgical procedures… and has more surgery scheduled. I could go on and on about the challenges that many in this half of the Hero-Group are up against right now.
Despite severe trials and tribulations, the patient-partners came to Boston to support their runner-partners. Like scattered atoms that miraculously bind in nature, these two groups formed into one perfect team!
I was so fortunate to have attended Genzyme’s pre-marathon celebration dinner on Saturday night, and to have finally met people with whom I’ve been in contact for the past several months, having helped to coordinate patients with running partners. This effort took hours and days to finalize – but it never felt like work for me. (There is a saying that when you love what you do for a living, you never work a day in your life!)
On Monday, the day of the Marathon, there aren’t words to accurately describe the joy and the air of celebration. We were at Mile 14, where Genzyme had a viewing section for us. We cheered on not only Genzyme’s runners, but also so many other terrific teams – good people from around the world – the scattered atoms aligning perfectly, running for a cause greater than themselves.
That atrocious act of murder and terror brought Boston Marathon 2013 to a sudden and screeching halt. While there are still many unknowns regarding the two perpetrators, we are certain about a few crucial facts. They did not understand the meaning of bravery, they did not know the definition of courage, and perhaps above all else – they underestimated the pluck and fortitude of those who surrounded them.
NORD sincerely and deeply thanks the Genzyme runners and their patient-partners for their efforts to help all who struggle with rare disorders. They are a very special team of heroes…perfectly aligned.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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