9 miles, Noah, and an Update on HCU Network America

On Friday night, I had the opportunity to connect with my patient partner for the NYC Marathon.  Her name is Noah.  She is 19 years old, and was born with an extremely rare disorder called Abetalipoproteinemia, or ABL for short.  She's also been experiencing some other symptoms, and is undergoing testing at NIH in their Undiagnosed Diseases Program.  I'm looking forward to getting to know her over the next few months & will be posting another blog about her soon!

I also received an email from Margie regarding the next steps for setting up the 501C status for HCU Network America.  The attorneys need to know who the initial officers of the board will be, and what the foundation's expected activities & estimated budget will be for the next three years.  And Danae' has created an HCU Pamphlet & Facebook Page for HCU Network America.  So, things are moving along with the new HCU foundation as well!

On Saturday morning, I woke up about 4:30AM, and started getting ready for my weekly long run.  I gave myself about an hour to get ready as I'm a slow mover in the morning.  I had breakfast, got dressed, packed a bag, and pulled up the directions to the location of this week's run at the Matthew Henson Trail.  It was about 30 mins away & my pace group was supposed to start at 6:10AM.  When I arrived, I didn't see Sandy, the pace leader for the 12:30 group.  So, I decided to run with a slightly faster pace group, the 12:00 min milers & it turned out to be a great decision.  I ran most of the 9 miles with Wendy and Paula.  We covered all sorts of topics uncluding the weather, hydration, sneakers, running experiences, and personal goals. 

 

I also briefly chatted with another runner (not sure of her name yet) who asked me about the Running for Rare Diseases singlet I was wearing.  It turns out she works at NIH in the infectious diseases department & she's familiar with the undiagnosed rare disease program - small world!  

With my recent foot pain & the humidity I was expecting Saturday's run to be brutal, but I was pleasantly surprised.  I felt the run went very smoothly.  When we finished up, there were refreshments waiting for us, including watermelon slices.  I've never been a huge fan of watermelon, but I decided to partake in a slice & it was absolutely delicious.  In fact, liked it so much that I had to stop on my way home at the grocery store to get some more, haha!  I did some further research and it turns out there have been some recent studies about the benefits of eating watermelon post workout.  And an added bonus for HCU athletes like myself, it's low in methionine (which is the amino acid my body can't break down).  I may have found a new post run favorite food!
 

This upcoming week, I'll be trying something new.  I'm getting a bit out of my comfort zone & will be joining my friend Jackie at Boot Camp class on Tuesday evening.  I'll let you know how that goes!