I was at a Rare Disease Event on Monday night in celebration of World Rare Disease Day (a post is forthcoming on this wonderful day).  During the event, I had a few discussions about marathon running and running in general…

Once in a blue moon comes a night that takes me out of this broken body. In my night dream I am running. I can feel each capable foot push off the firm believable earth. I can hear the strength…

As I’m sure are the rest of my teammates (and everyone else in the North East for that matter), I’m having a difficult time finding dry pavement to stick to my training schedule.  As a result, I’ve been forced inside…

maybe it was the first storm of winter or the darkening sky where once the sun lay gold on an open palm.  perhaps it was the entire day, hope hanging on thin infusion tubes in the arms of grace or…

For the 2nd year, the Genzyme marathon team members have  partnered with rare disease patients.  Four of the partnerships are described in this post.  Jay is partnered with Rachel, a Canavan Disease patient who we had the honor of meeting at a fundraising…