Blog Archives

Running is easy, blogging is hard….

Writing down your thoughts has to be one of the hardest things to do…. Those that know me even in the slightest bit know that I truly enjoy chatting with people. So, writing something for the Running For Rare blog

Posted in Running Stories, Uncategorized Tagged with: ,

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

Posted in Uncategorized

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

Posted in Uncategorized

Never Thought I’d Become a Marathoner, But Here I Am

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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: , , , , , , , , ,

Life is More than just a Marathon

A lot of us in the Rare Disease world refer to the ups and downs of the diagnosis (or hunt for a diagnosis) as being a marathon. This weekend, I discovered that our life is far more than just a

Posted in Uncategorized

RACE COMPLETED

The 2016 Boston Marathon was pure misery: My feet hurt, my knees hurt, and with the gels I was taking during the run, my reflux was acting up, so my chest hurt and I felt nauseated for almost the entire

Posted in Uncategorized

“I can’t believe this is really happening…”

Those are the words I managed to mumble to Dan Wilkens, my Running for Rare partner, around mile 12.5 last year; I couldn’t believe I was about to complete my first Half Marathon. A few minutes later, Dan grabbed my

Posted in Uncategorized

Shauna and her rare disease – Rothmund-Thomson Syndrome

Shauna's first RFRD Marathon

I’d like to start with a heartfelt Thank You to the Running For Rare runners, patient partners, volunteers, NORD, UDN and everyone else who is involved in this community. Our family has made so many friends and bonds in these

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Being Resilient and Happy

I am so honored and excited to be running in the 2016 Boston Marathon to raise money for NORD. My patient partner this year is Sarah who is diagnosed with fibromuscular dysplasia. As we’ve gotten to know each other, I’ve been inspired

Posted in Uncategorized

It starts

Last Monday, I participated in the Sanofi Genzyme Running for Rare Disease Day Relay. I ran from my Westborough, MA office building to the Framingham site. The run was 6.9 miles; the longest run of my training for the May

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Boston Marathon

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New York City Marathon

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