Tara is a RARE Community Partner  for the third year with runner, Nick Thurlow, and is representing the Mast Cell disease community. She has been a wonderful member of our team for 3 years and we would like to share her…
Blog Archives
RARE Community Partner Continues Her Fight
Posted in Patient Stories Tagged with: Assembly Education Committee, Mast Cell Disease, NYS Bill A1470B-2015, rare disease, stem cell transplant
Sam Vs. VWM
Andrew Hegedus is Sam’s running partner. Here is our story. Sam is happy 4-year old, full of life, quick to laugh and smile. He has a great sense of humor. He is loving, affectionate, grateful and appreciates the little things…
Posted in Patient Stories, Uncategorized Tagged with: rare disease, runningforrarediseases, SamvsVWM, VWM
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
You Can’t Do It Alone
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…
Posted in Patient Stories, Running Stories Tagged with: boston marathon, partner, patient, patient partner, rare disease, rare disease day, running, Shwachman Diamond Syndrome, Tay-Sachs disease
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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