CALLING ALL: Rare disease patient advocates who want to participate in a life-changing experience to raise awareness and funds for patients desperately seeking a diagnosis!

If you’re a rare disease patient or patient advocate who is passionate about helping patients with undiagnosed diseases, we have an opportunity for you! About the Running For Rare Diseases Marathon Team The Running for Rare Diseases Marathon Team has

Posted in Patient Stories

Running to Keep Up

The end of September marked a whole year that #WeRunTogether virtually. From Tuesday training runs, to synced race schedules, and virtual pacing support during PR (Personal Record) quests, Andrew Scholte and I have been racking up the joint miles between

Posted in Patient Stories, Running Stories

Those Silent Tears #7

June 2007 I underwent an abbreviated session of IVIG. I was referred to a Hematologist and underwent my first bone marrow biopsy. I did not know what to expect, so I am assuming I was a bit more relaxed for the

Posted in Uncategorized

Thoses Silent Tears #6

January 2007 I became violently ill, extremely weakened and no longer had the balance to even walk. I crawled to get to the bathroom and could only wash off in the bathtub. The EMS calls became more and more frequent.

Posted in Uncategorized

No Day But Today

On Friday I began a 100 km journey into the night, the start of the race marked by fireworks in the sky. In truth it wasn’t the beginning as I had already traveled 1,900 km, since the start of 2014,

Posted in Patient Stories

We will run 1000 miles

A few days ago, I completed my 1000th mile as a member of the Genzyme Running Team with fellow team members Jessi and Phil. Over the past two years through our weekly Tuesday morning runs in Cambridge, training runs and

Posted in Uncategorized

Running Heroes

Yesterday, June 4th, was National Running Day in the United States and I was happy to hear from my running partner, Andrew, that members of the Genzyme Running Team were out again and even more exciting, the rumor of new

Posted in Patient Stories, Running Stories

Running with Roses

This past weekend I carried a single dried rose petal as I competed in my first ultra-marathon, practice for an upcoming goal race. The pink petal that came along for the ride had recently arrived, tucked into an envelope with

Posted in Patient Stories, Running Stories

Those Silent Tears #5

June 2006 I consulted with a Specialist who was now primarily treating pediatric patients.  I had seen him a few years back for pseudo-anaphylactic episodes and difficulty conceiving.  Little did we know those would eventually become extremely important clues to my ultimate

Posted in Uncategorized

Reflections from Orange Slices

This is my first post, so bear with me. I have many thoughts to share about my experience of running the 2014 Boston Marathon as part of the Genzyme Running Team for NORD. In keeping with our captain’s advice, Phil

Posted in Uncategorized

Welcome to the Running Archive

Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.