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Running Heroes

Posted on by Emma Rooney — 1 Comment ↓

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…

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Posted in Patient Stories, Running Stories

Running with Roses

Posted on by Emma Rooney — 4 Comments ↓

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…

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Posted in Patient Stories, Running Stories

Running For Rare-Christopher’s story

Posted on by Anne Burtenshaw — 5 Comments ↓

Our son Christopher has Hyperinsulinism (HI). He was diagnosed at 7 months of age after an observed seizure while we were on vacation in North Conway NH. At the local ER testing revealed his blood sugar level was only 27.…

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Posted in Patient Stories

My Run 4 Boston

Posted on by Emma Rooney — 4 Comments ↓

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…

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Posted in Patient Stories

Gina’s Story

Posted on by Pete Smith — 3 Comments ↓

I have the honor and distinct pleasure to represent Team Genzyme/Running for Rare Diseases in the 2014 Boston marathon.  The focus on this year’s race is heightened for obvious reasons, and I hope that some of that attention lands on…

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Posted in Patient Stories

Storytellers Wanted

Posted on by Emma Rooney — 3 Comments ↓

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…

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Posted in Patient Stories

This is What it’s All About

Posted on by amy atwood — 1 Comment ↓

The majority of our 2014 Running for Rare Diseases Boston Marathon Team ran from the Boston Marathon starting line in Hopkinton through mile 21 near Boston College on Saturday. It was the last long training run of the season –…

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Posted in Patient Stories, Running Stories Tagged with: , , , , , , , ,

My Bones Just Don’t Like Me…….

Posted on by Marissa Poole — 4 Comments ↓

I don’t have a disease, “my bones just don’t like me”….. In a recent meeting with my patient partner Natali, this is how she described her condition and is a testament to her sense of humor and the positive spirit…

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Posted in Patient Stories

You Can’t Do It Alone

Posted on by Shay Zukowski — 3 Comments ↓

I recently took a week off to travel up the California coast and visit family and friends in San Francisco. My training plan had me running 13 miles that weekend, so I convinced my best friend Liz, who lives out…

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Posted in Patient Stories, Running Stories Tagged with: , , , , , , , ,

Meet Melissa Higgins – An incredible human being who faces up to the challenges of Niemann-Pick Type B disease everyday

Posted on by Shariq Ali — 2 Comments ↓

I will be taking on the challenge to run the Boston Marathon on 04.21.2014. This will be my third marathon if I make it to the start line!  My goal is to increase awareness of Rare Genetic Disorders and to…

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Posted in Patient Stories, 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.