The following blog post was written by Jessica Karnes about her HCU journey. I met Jessica in 2011 at the 1st ever HCU Conference in Denver, CO. Since the conference, she & I have remained in touch as Facebook friends. She’s had a tough road the last few years with broken bones & a terrible…
HCU Heroes – Carson’s Story
The following blog post was written by Dana Hunt about her youngest son, Carson Brady Hunt, who was born with a very rare kind of HCU that was not detected through newborn screening. When Dana shared her family’s story, she told me that at 3 months old Carson was admitted to the hospital for a…
Happy Valentine’s Day!
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…
HCU Heroes – Colbie & Cayle’s Story
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…
HCU Heroes – Danae’ and Garrett’s Story
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…
HCU Heroes – Charlotte’s Story
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…
HCU Heroes – Hayley’s Story
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…
2nd Annual Superbowl Block Pool for a Good Cause!
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…
HCU Heroes – Nathan’s Story
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…
HCU Heroes – Maeve’s Story
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…