When I think or rare disorders one thing that pops in my head is Kevin Bacon. Â It’s an odd thought, but if you’ve heard of him, then you’ve probably heard of the game “6 degrees of Keven Bacon.” Â If you…
Running for Rare First Timer
About two months ago my childhood friend Emily asked me if I’d be interested in running the Hartford Half with Running for Rare. I knew I could do the running part, but was nervous about the partner part. I asked…
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Advocating to win the fight
My name is Noah Victoria I am 19 years old I was diagnosed with Abetalipoproteinemia, which is a rare metabolic disorder. This was my second year participating in Running for Rare Diseases as a patient partner. I must start off…
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Never Thought I’d Become a Marathoner, But Here I Am
Hey all! First of all, thank you for taking the time to give me a few minutes of your time to discuss my marathon training and my Community Partner, Tara Notrica. My name is Kaitlin Bartlett, I’m 29 years old…
Posted in Running Stories, Uncategorized Tagged with: #running4rare, community partner, fundraising, kate bartlett, marathon runner, marathon training, nyc marathon, patient partner, rare diseases, tara notrica
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