New runner

Dear all Arrived from France in September and I am honored to start this 2015 challenge with Running for Rare Diseases Marathon Team. I would like to thank you all, as this project reminds me the deep reason of my … Continue reading

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The Most Selfish Thing I’ve Ever Done

This is a letter I wrote to my family and friends (obviously) and decided to share on my personal blog as well as here because I think many others are feeling similar to me – anxious, excited, terrified – at … Continue reading

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Wanted: Passionate Patient Partners

All of us on the Running for Rare Diseases Marathon Team Board are getting really excited about the new season. For weeks now we have been pouring over the applications of all the runners who want to join us for … Continue reading

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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 … Continue reading

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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 … Continue reading

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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 … Continue reading

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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. … Continue reading

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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, … Continue reading

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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 … Continue reading

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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 … Continue reading

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