Blog Archives

Introducing the Community Partner Committee

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

Posted in Patient Stories

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: , , , , ,

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

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Welcome to Running for Rare Diseases

Marathon runners dedicated to making a positive impact on the lives of people with serious diseases have teamed up with NORD to make a difference. Click here for more info.

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