Blog Archives

Shauna’s Speech at RFR 2016

We are so thrilled to be paired with Running For Rare for the 4th year! I can’t explain it any better than Shauna did last year, so I am sharing her speech for those who were not there. Her words

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Back

This will be short and sweet. It’s been a number of years since I was part of the R4R community. In a little over 1 week I’ll toe the line at Providence as a member of the R4R running team

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Providence or Bust

Providence or Bust With a little over a week to go (9 days to be exact, but who’s counting) I ask myself if I really think I can do this again. Having no experience running (and very little training) I

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Grateful

It’s two weeks until the Providence Half Marathon.  I’m so excited to be participating as a member of the Running for Rare team.  I’ve definitely been procrastinating on this blogpost but only because I’ve never blogged before and am not

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10 miles and mommy guilt.

  I write this on along a car ride to an out of town wedding midday after my first double digit run. I reached 10 miles this morning. It was a beautiful morning in NC/SC. I say this because we

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Providence and PKU: Part I

I have a lot of love and passion for the rare disease community every day,  but especially on days like today, since we went to my daughter’s genetics and metabolism clinic st UNC.  Annabelle is 19 months old exactly today

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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

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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

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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

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Boston Marathon

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New York City Marathon

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