Last Monday, I participated in the Sanofi Genzyme Running for Rare Disease Day Relay. I ran from my Westborough, MA office building to the Framingham site. The run was 6.9 miles; the longest run of my training for the May…

17 Miles. That is what I ran today. The longest and by far the most difficult run I have had to date. The first 15 miles went well despite the single digit temperatures and the wind chill that brought the…

This week I missed 5 days of training in a row due a to combination of factors – work, being tired, Run4Rare fundraising, kids waking up in the night, and just not feeling like getting up early. I don’t like…

It has been just over 5 years since Madi was diagnosed with CCHS. Initially we were overwhelmed, and just could not digest our future, but most especially her future. How will she tell friends? How will she meet “someone” ?…

There could be no better day than today to introduce myself as part of the Running4Rare Boston team. But, before I tell you the importance of this date, I’ll tell you a bit more about myself. My name is Sarah,…

In 2015, as an experiment, the Running for Rare Diseases (Running4Rare) board decided to add the Providence Marathon and Half Marathon as an option to inspire the involvement of more employees.  Incredibly, not only were more employees interested, so were…

Greetings from your RFRD team member in the Mountain Time Zone. I am Justin but better known as Garrett’s dad in many circles, including the RFRD crew. Garrett has the honor of being Phil Maderia’s patient partner this year.   When…