The Running for Rare Diseases Team is seeking passionate community members to join our 2014 Boston Marathon Team as patient partners! Patient Partner Testimony: For those of you who don’t know me, my name is Kristin. I’m an avid runner…

Team Wylder Nation Race Report:  Ghost Train 100 Mile Endurance Race 10/26/13 – 9:00 AM From the top going clockwise…Kaitlyn, Lily, Riley, Amber, Faith, Quinn, Trek, Jacob & Wylder (center) I got up at 5:00 AM and went through my typical…

Tomorrow, I will run with my team of angels, Trek, Jacob, Kaitlyn, Quinn, Lily, Riley, Faith and Amber and Wylder  at the , Ghost Train 100 endurance race.                                         October is…

Most of you know about the injury which occurred at my last 100 mile race attempt on June 15, 2013.  Since then, I have aggressively sought to overcome this adversity.  I have made many changes in my training including adding rolling,…

By Andrew and Emma We blogged earlier about our “Canada-Germany Running Connection” and thought it was time that we update you on our recent races in Germany. Andrew says: I’m back in Boston since running the Berlin Marathon on September…

Rare Disease Day takes place on the last day of February to raise awareness of rare diseases and their impact on real people’s daily lives. In 2012, a relay style torch run, linking the work sites of Genzyme in Massachusetts,…

This past February, Emma, a Gaucher Patient, was the guest speaker for the Rare Disease Day events held in Massachusetts. During her visit, Genzyme Employees heard about her Gaucher advocacy project called “My Normal“. Emma developed this program as a…

A couple of weeks ago, I was traveling with an engineer I had recently hired to Philadelphia.  After boarding, I was looking through my schedule for the week and realized that she and I had a scheduled one on one…

In preparation for the Boston Marathon, we held a playlist fund raiser where employees donated $5 and selected a song to be put on the my playlist during the marathon.  It was a great fund raiser and inspired some real…