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 […]

posted on April 21, 2016 by Kyriakos Economides 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 race.  My training was derailed once by the flu and […]

posted on April 04, 2016 by Amanda Foisy 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 hand, and we were crossing the finish line together. […]

Posted on March 28, 2016 by Laurie Sperou 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 past three years….it is hard to put into words […]

Posted on March 22, 2016 by Martha Staples 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 by her strength, resilience, and positive attitude. February 29 was […]

Posted on March 08, 2016 by Emily Burke 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 1st Providence Half Marathon so far. In the past […]

Posted on February 13, 2016 by Jason Dunklee This week I missed 5 days of training in a row due a to combination of factors – work, being tired, Run4Rare fundraising, kids waking up in the night, and just not feeling like getting up early. I don’t like missing training days and I find that each day […]

Posted on February 13, 2016 by Sarah Yang It has been just over 5 years since Madi was diagnosed with CCHS. Initially we were overwhelmed, and just could not digest our future, but most especially her future. How will she tell friends? How will she meet “someone” ? How will she live on her own? Or […]

Posted on January 19, 2016 by Sarah Yang There could be no better day than today to introduce myself as part of the Running4Rare Boston team. But, before I tell you the importance of this date, I’ll tell you a bit more about myself. My name is Sarah, and I’m a mom of three amazing children. I […]