Did you know that Running for Rare has a Community Partner Committee? Our main objective is to support healthy and safe community partnerships for the Running for Rare team. We develop strategies to grow the community and work to ensure…
Blog Archives
Big City Hope
With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the…
Posted in Patient Stories, Running Stories
Will Run for Coffee
By Jen Melanson with Emma Rooney I am very excited to, once again, be part of the Running for Rare Team, this year as a runner. I’m training to take part in the Providence Half Marathon which is less than…
Posted in Patient Stories, Running Stories
Light the Path
I appreciate the solitary nature of running—the way you can just get up and go without needing to form a team. In the same breath, I also know that I would be out jogging far too infrequently, through the winter,…
Posted in Patient Stories, Running Stories Tagged with: focus, path, support, team, training, winter
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
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
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
My Run 4 Boston
I never made it to Boston but on Marathon Monday I ran for Boston in my own unofficial way from Germany. My weekend was spent studying the Boston Marathon course through reading Jessi’s recommended, “26.2 Miles to Boston: A Journey…
Posted in Patient Stories
Storytellers Wanted
The GRT Infographic (a type of story) tells us that “23 patient stories so far†have been shared on the Running for Rare Diseases blog. To mention just a few, we’ve been exposed to blogs, like Erica’s Rarely Defined, watched…
Posted in Patient Stories
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.
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