Category Archives: Uncategorized

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 … Continue reading →

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 … Continue reading →

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 … Continue reading →

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 … Continue reading →

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.  … Continue reading →

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 … Continue reading →

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 … Continue reading →

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 … Continue reading →

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 … Continue reading →

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, … Continue reading →