Running for Rare Stories

Author: Rena Baek 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 should be easy, right? Can I tell you the number of times […]

He has 8 heart conditions. She has a rare cancer. Together they’re running the Boston marathon. Little Tessa Booth has been an inspiration to Fort McMurray runner Blake Crossley. Blake Crossley, left, and Tessa Booth, right. The Fort McMurray girl has endured several surgeries and weeks of chemotherapy after being diagnosed with Plural-pulmonary Blastoma or […]

Posted on April 27, 2017 by Brittany Hoffmann 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 ran the Hartford Half Marathon last October. I was flying high until about Mile 6 when it […]

Posted on April 23, 2017 by Elke Phillips 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 really sure what to write about.  So, I thought I […]

Posted on April 15, 2017 by Rachel Field 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 live right on the border so I’m always crossing the state line […]

Posted on April 7, 2017 by Rachel Field     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 and she has PKU.  A brief description on PKU for […]

Posted on October 9, 2016 by Sarah Dubuc     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 myself selfish questions like, What if we don’t […]

Posted on October 7, 2016 by Noah Victoria   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 thanking my mom for showing me this wonderful program. […]

Posted on July 31, 2016 by Kaitlin Bartlett 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 and grew up in Syracuse, NY. Syracuse is home to the Orange, the […]

posted on April 21, 2016 by Sarah Yang 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 marathon… 14 weeks ago I took on the task […]