Author: therarerunner

Hi All!  Just a quick update today.  I wanted to mention a few things & I couldn’t resist giving you a sneak peak of the my newest HCU Hero – meet Carson from Kansas!  His mother, Dana, shared some of his story with me last night & sent me this photo –  what a little…

The following blog post was written by Sarah and Cole Sullivan about their children Colbie and Cayle. This story makes my heart melt!  Both Colbie and Cayle were diagnosed with HCU after Colbie suffered a massive blood clot on her brain.  I’m honored to share their story and dedicate part of my 2014 Boston Marathon…

The following blog post was written by Danae’ Austin.  I met Danae’ and her brother Garrett in 2011 at the 1st ever HCU Conference that took place in Denver, CO.  They are 2 of 8 siblings, and they both were diagnosed with B6 non responsive HCU as children.  Since the conference, Danae’ & I have…

The following blog post was written by Kristin McEvoy. Her daughter, Charlotte, was diagnosed with HCU at age 7. In Australia, where the McEvoy’s live, Charlotte was not screened for HCU as a newborn, and as a result, she started developing eye problems at a young age. Fortunately, Charlotte is B6 responsive, and her levels…

The following blog post was written in cooperation with Janna Thomas.  Her youngest daughter, Hayley, was diagnosed with HCU following newborn screening in the state of Texas.  Her story reminds me a lot of my own, which makes it very personal.  I will absolutely be dedicating one mile of my 2014 Boston Marathon to this…

I am currently fundraising for the National Organization of Rare Disorders (NORD) while I train for the 2014 Boston Marathon.  In an effort to increase my fundraising & help reach my goal, I am hosting a Superbowl Block Pool.  It is $20 per square and half the proceeds will go to NORD.  The other half…

The following blog post was written by Marian Cummings. Her son, Nathan, was born with HCU, but was not diagnosed with the disorder at birth.  Fortunately, he is B-6 resposive – meaning his levels can be controlled with high doses of B vitamins, but it wasn’t until he started developing eye problems that he was…

The following blog post was written by Matthew and Laura Nelson.  Their daughter, Maeve, was born with the same rare disorder I have – Homocystinuria (HCU). I will be dedicating one mile of my 2014 Boston Marathon to this beautiful little girl! Maeve was born on May 9, 2012.  As part of the check-in process…

Where has the time gone?  Seems like just yesterday it was Thanksgiving & I was promising you a follow-up post about the Philadelphia Marathon.  What can I say?  ‘Tis the season for having no time to blog. Here is a quick re-cap of the last few weeks for me: 1. Philadelphia Marathon – I successfully…

First and foremost, HAPPY THANKSGIVING to you all!!!  I know many of you ran Turkey Trots this morning, and hope you are now enjoying this special day full of food, football & family! I’m currently at my brother Kevin’s place & rudely typing this blog while everyone else is sitting around Kev’s big screen noshing…