Month: January 2014

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…