It’s hard to believe as I sit here in Oregon experiencing a rare 80 degree day that one week ago today I was at milepost 14.5 in pouring rain experiencing my first marathon and waiting for my partner Lisa to come…
Blog Archives
Wow! How do I say thank you!
Posted in Patient Stories, Running Stories, Uncategorized Tagged with: #running4rare, awareness, boston marathon, genzyme, Lindy, Lisa, MLDfoundation, patient partner, runningforraredisease, runningforrarediseases
Nerves
This is not about running. I don’t know how many times we’ve said that, and I feel like I am a prime example, because there’s no way I would do this if it was about running. I do it because…
Posted in Running Stories Tagged with: #running4rare, awareness, boston marathon, Marathon, marathon monday, patient partner, rare diseases, running, runningforrarediseases, training
“Marchâ€-ing Through Together
While I often joke that the reason I am running the Boston Marathon is so I can buy one of the jackets, the real reason is I wanted to do that one final thing I had yet to do as…
Posted in Patient Stories Tagged with: #running4rare, awareness, boston marathon, Fundraise, fundraising, Marathon, patient partner, runningforrarediseases
Overcoming the February Funk
I feel like a broken record complaining about the snow. But for the past 6 weeks, it’s all anyone in Boston has talked about. And as ridiculous as it might sound to complain about something as basic as the weather,…
Posted in Running Stories Tagged with: #running4rare, awareness, boston marathon, Marathon, Niemann Pick, patient partner, providence marathon, rare disease day, rare diseases, relay, running, running for rare diseases, training
My Promise
A year and a half ago I joined Genzyme. I had heard of the company and knew the name but before I interviewed with them I didn’t know their mission and the passion people have to find ways to help…
Posted in Running Stories Tagged with: awareness, boston marathon, fundraising, genzyme, patient partner, rare disease, runningforrarediseases, winter
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…
Posted in Running Stories, Uncategorized Tagged with: awareness, boston marathon, Fundraise, fundraising, Marathon, marathon monday, partner, patient, patient partner, rare disease, rare diseases, running, runningforrarediseases, training, winter
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…
Posted in Patient Stories Tagged with: awareness, boston marathon, fundraising, Marathon, partner, patient, patient partner, rare disease, rare diseases, running, runningforrarediseases
This is What it’s All About
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 –…
Posted in Patient Stories, Running Stories Tagged with: awareness, boston marathon, fun, marathon monday, patient partner, rare diseases, running, runningforrarediseases, training
Why Rare Disease Day Matters
Last holiday season, I organized a gift-wrapping fundraiser for the National Organization for Rare Disorders (NORD) at a bookstore. One of my “customers” jokingly said, “Rare diseases? Right, because you wouldn’t want to raise funds for any of those common…
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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