The photo gallery from yesterday’s rare disease relay has been uploaded. While there is more to be said about the wonderful events of the day, sometimes a picture is worth a 1000 words. The gallery has also been posted to…

A loved one passed away this week shortly after turning 100 years old.  She really was an unbelievable woman.  If she didn’t answer the door, she was probably out in the garden, raking the leaves in the back yard or…

You can track the progress of Thursday’s rare disease relay between Framingham and Cambridge by clicking on the link below. It will also work on iphone, ipad, or droid devices via an app. http://www.myathletelive.com/storage/races/2013/RDDR/index.html Photos from last year’s relay are…

The Genzyme Boston Marathon Team’s Virtual 5k for NORD is a virtual event on Rare Disease Day to benefit the National Organization for Rare Disorders (NORD) and all those impacted by rare diseases. Event can be completed by anyone, anywhere. Walk,…

This morning Jessi, Kelsey, Luis, Phil, Sharon and I ran our usual Tuesday morning loop around the Charles River. The run was great as usual but on this snowy morning it made me think about why we are running in…

The 2013 Running for Rare Diseases marathon team will soon kick off its fundraising efforts and patient events leading up to the Boston Marathon on Monday April 15th. There are a number of ways you can stay connected to the…

I came across this TED Talk by Brene Brown:  ‘The power of vulnerability’ and thought it was worth sharing.  She gives a wonderful perspective on connections and why we are here.  She discusses how connections give us purpose and meaning…

A video of the runners and patients that participated in the 2012 Running for Rare Diseases Boston Marathon event is now available: It is also highlighted on the Genzyme home page.

The site switched to a new subscription service today from wordpress.com. Existing subscribers should receive a confirmation email to authorize the new subscription. If you would like to subscribe to get new posts by email, enter your address in the…

I had lunch on Thursday with a very special young man.  At only 20 years of age, Christian recently had stents implanted around his heart to unclog two major arteries.  Christian is inflicted with familial hypercholesterolemia (FH); a genetic disorder…