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…

It has been ten days since the horrific events that occurred at the Boston Marathon. On the morning of the marathon as a member of the Running for Rare Diseases Team I was feeling excited about the new connections that…

There are 3 elements of a habit: a trigger, a routine and a reward. For example, my morning starts at 4:15 AM when my alarm goes off – the trigger.  Having planned the previous evening to meet a co-worker at…

A belated note to the blog to let you know that all the team runners and patient families are safe. Each of us was overwhelmed when we returned home by the concerned calls and messages reaching out to us from…

If you plan on watching the Boston Marathon on Monday, April 15, be sure to cheer for the 17 members of the “Running for Rare Diseases” team who are running for the National Organization for Rare Disorders (NORD). Runners have…

Marathon Monday is almost here!!  As you know Phil Madera will be running in honor of our little Wylder James who battled Niemann Pick A disease.  This is a beautiful reminder the GOODNESS in the World that Wylder taught us is out there everyday. …

The outpouring of support this year has been fantastic.  We presently have near 80 items up on the Online Silent Auction and more to be added.  We will continue to take donations right up until the closing of the auction on…