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Running is easy, blogging is hard….

May 9, 2018

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 […]

“I Can’t Believe this is Really Happening…”

April 4, 2016

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. […]

Shauna and her Rare Disease – Rothmund-Thomson Syndrome

March 28, 2016

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 […]

Staying Focused

February 13, 2016

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 […]

Life is a Marathon

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 […]

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