Time is flying! Today marks exactly one month until Marathon Monday!!! I CAN’T WAIT! Here’s a quick recap of the last few weeks: Fundraising & Training My fundraising has been going great! Thanks to all of you generous people, so far, I have raised a whopping $11,535 for The National Organization of Rare Disorders. That’s…
Month: March 2014
HCU Heroes – Eirean’s Story
Meet my latest HCU Hero – Eirean Bennett from Lupton, England! Today is Eirean’s 16th birthday. Happy Birthday Eirean!!! Eirean’s Mom, Jessica, reached out to me and asked me to share her story. She was diagnosed with classical HCU at age 5. She had her lenses removed at age 7, and is partially sighted. Eirean…
HCU Heroes – Nicolas’s Story
Meet Nicolas from Slovakia – my newest HCU Hero! Nicolas’s Mom, Eva, reached out to me and asked me to share his story. She tells me that he was diagnosed at 6 1/2 years old. At the time, he had poor eyesight, behavior problems, and was lagging behind. After being diagnosed with Homocystinuria, he was…
HCU Heroes – Pam’s Story
The following blog post was written by Pam Penrose about her HCU journey. Pam was born in Long Beach, California in 1957. There was no newborn screening at that time. Newborn screening first debuted in the United States in the early 1960s, and has expanded to countries around the world, with different types of screening…