Choroideremia. That’s a mouthful. I had to practice saying it… heck, I avoided saying it for the longest time because I butchered it every time I tried. But like the name, it’s a hefty disease. Choroideremia is a rare disease carried by women, but only affects men, causing a loss of that starts to occur in their teens, and can ultimately lead to blindness. My dear friend Liz is a carrier of this disease and recently found out that her son unfortunately has this recessive gene.
When I decided to run Rock N Roll New Orleans, Liz was the first person that came to mind. No, not because of choroideremia, but because Liz loves New Orleans. She’s obsessed with it. When I lived in California, we would have Ghoul’s Nights where we watched horror movies and talked about amazing locations with haunted histories. New Orleans is always part of that list, but also because we both just love the culture and atmosphere of it. If you haven’t been, it’s a pretty incredible place. I ran the half marathon in NOLA a couple of years ago with a group of friends, but a few of us enjoyed it so much that we promised to visit again. Well, when my friend Stephanie said she wanted to run her first full marathon, we decided it could only be done in this incredible city. Once again, Liz came to mind.
This time, I realized that while I rarely fundraise for races (the last time was probably the Avon Walks that I did in my 20s), this was a worthy cause. Liz had just found out that her son had choroideremia and I wanted to help in any way I could. Running for Team CHM is a chance to both raise awareness for this disease, and to raise money towards the development of a cure or treatments, both of which have made considerable progress in recent years.
So this March, when I lace up for that long 26.2 mile trek, I’ll be doing so on behalf of Team CHM, with Liz and her family on my mind.
If you would like to contribute to my fundraising page, any amount is appreciated! You can find the link to my page here: Running 26.2 for the Smith Family