I run predominantly in the mornings, generally between 5 and 6am at a length of 6-10 miles each day during the week. I choose the morning because this is my time; no meetings, no lost family time, and nothing else…
Blog Archives
From Skepticism to One Awe Inspiring Experience…
On January 20, 2014, a young girl, just turned 18 years old, received an email. That email was from NORD (the national organization for rare disorders) and stated that Genzyme was looking for patient partners for the Boston Marathon. The…
Posted in Patient Stories
Running for Sam
 On friday I had the great fortune to meet my patient partner Sam, and his parents, Allyson and Nick Buck, in their home in Greenwhich, CT. Allyson has already posted a great summary of Sam’s story. Sam is an amazing little…
Posted in Patient Stories, Running Stories
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
Mom Knows Best (Gaby’s Story)
Hello! My name is Gabriella Talarico, but everyone calls me Gaby. I am a 20-year-old sophomore attending Rutgers University. I aspire to graduate with a degree in Food Science, I love to swing dance, and I have made great friends…
Posted in Patient 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: focus, path, support, team, 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
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…
Posted in Patient Stories
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
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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