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

Posted in Uncategorized

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

Posted in Uncategorized

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

Posted in Uncategorized

Introducing the Community Partner Committee

Did you know that Running for Rare has a Community Partner Committee? Our main objective is to support healthy and safe community partnerships for the Running for Rare team. We develop strategies to grow the community and work to ensure

Posted in Patient Stories

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

Posted in Uncategorized

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: ,

Big City Hope

With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the

Posted in Patient Stories, Running Stories

26.2 Degrees of Keven Bacon

When I think or rare disorders one thing that pops in my head is Kevin Bacon.  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.”  If you

Posted in Running Stories

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