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 heartbreaker!!!
Carson was born with a very rare type of HCU which was not detected through newborn screening. I’ll be posting his complete story soon!
Well, as we are all aware, today is Valentine’s Day. It’s also my brother Brendan’s birthday. Brendan has always been a big supporter of everything I set out to accomplish. Last year, he traveled with me & my Mom to Boston for the marathon. It meant the world to me to have him there. Wishing you the happiest of birthday’s little brother!
Today also marks 2 weeks until World Rare Disease Day. This is a day of observance to raise awareness for rare diseases (such as HCU) and improve access to treatments. One way to get involved is by changing your profile picture on your favorite social media networks! Be sure to use hashtags #CareAboutRare and #WRDD2014.
Here’s mine:
You can download step-by-step instructions on how to do this here:
There are MANY other ways to get involved on World Rare Disease Day. You can read about of them here:
Today also marks 65 days until the Boston Marathon – time is flying! My training is coming along. I had a solid long run last Saturday (a little over 11 miles) and completed a 5K on Sunday with my new running buddy :). Here’s a little pre-race photo from Sunday:
This year the Boston Athletic Association announced the creation on the Boston Marathon World Run. It’s an online platform that encourages runners of all abilities to participate in the spirit of the 2014 Boston Marathon. So, if you’d like to virtually run with me on April 21st – check this out:
Happy Valentine’s Day Everyone! Hope you have a wonderful day spent with your loved ones :).
