The Rare Runner

Spring is coming and there’s lots of updates on the horizon! First, let’s do a recap the last two months: I completed the Zooma Love Run Challenge that began at the beginning of the year – running at least 1 mile a day for six weeks.  This really helped start off the year with consistency. I…

I’m happy to report that the Miami Half Marathon was a success!  Here’s a quick recap and some photos from race day: I woke up around 4am to shower, get dressed, eat breakfast, and head out to the starting line of the race.  For breakfast, I had some coffee, a Vitaflo HCU Express20 with water, 3/4 of…

Well the time has come, I’m off to Miami today!  I’m excited to bring awareness to HCU by running the Miami Half Marathon and I’m also elated to be escaping this cold winter weather – even if just for a few days! Here’s a sky video of the race from a few years ago to give you…

I met Kaden’s parents, Bridgett and Basil, at the very first HCU Conference in Denver, Colorado back in 2011.  That was actually the very first time I’d met any other HCU patients or parents – the beginning of what is now many connections in both the HCU community and the greater rare disease community.  The…

I first connected with Ella’s Mom, Kaiti, back in 2013.  Ella was just 5 months old at the time, but thanks to the internet and Facebook, we were able to start a dialog and have remained in touch over the years.  I’m thrilled to dedicate a mile to Ella in the Miami Half Marathon! Here’s…

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 2019 Miami Half…

Meet Samantha, the latest HCU Hero on the Miami Half Marathon team!      Samantha’s Mom, Amber, shares their family’s HCU journey:   Samantha Gibson was born June 2, 2015. Her newborn screen found her elevated homocysteine and was diagnosed with Homocystinuria around September 2015. Her first year was great and her levels were where…

I met the Skeens family at last spring’s HCU Conference in Boston.    They are from Beckley, WV and their son, Landon, was diagnosed with Classical Homocystinuria at the age of 4.  Landon’s Mom, Rachel, reports that since diagnosis and the beginning of his treatment, his health has improved greatly. Landon is now in the 6th grade…

I’m thrilled to introduce two more HCU Heroes on the Miami Half Marathon team, Callum and his sister Caoimhe from Cork, Ireland.  Their Mom, Ciara, reached out to me today and shared their photos.  She reports that  both kids amaze her everyday with what they’ve achieved so far in life.  They are happy & healthy…