Hello everyone! Sorry I disappeared for a bit, post my Yosemite trip I came down with a cough that has been screwing me lately. I finally went to the doctor today so hopefully I am getting back on track. I want to share some of the randomness of the last week, along with a cause that I’m supporting for a sweet little girl named Clara.
So last Saturday’s long run was a bit of a mess. I set out with a plan to do 14 miles, but due to whatever breathing issue I’ve been having my body just said no. I ended up having to walk the last two miles just to get to 13 and had to stop and lay down a couple of times because I thought I was going to pass out.
For the record I sweat a lot and I had sat down first, I did not pee myself in this picture. Also a huge thank you to my good friend Shannon for not abandoning me, and for snapping that memorable moment!
But I made it out alive, and tried to take this pic at the end in my Clara shirt which I will explain here in a bit.
Post embarrassing long run performance I hosted ‘Sangriathon’, because why wouldn’t I have a party the same day I thought I was going to die on a curb?
The intent behind Sangriathon was to compete for who could make the best Sangria. What we found is that we can all make good Sangrias so we are all winners. And just for fun I made everyone drink them out of empty Tostitos jars. I’m a true Frito girl through and through.
Same group of friends had a Star Trek themed birthday party a few days later. Because why not celebrate the day of your birth with Gagh?
But most importantly today I wanted to talk about a cause that I’m supporting. One of my co-workers at Frito-Lay has a daughter that needs our help. I can’t speak highly enough about this family, they are the nicest lot of people you will ever meet. Ryan actually helped me change career paths from sales to finance, and I wouldn’t be where I am today without his help. But their sweet little girl named Clara has a terrible disease called GM1 gangliosidosis.
I remember when Clara was born I was working for Ryan out in California. I only got to meet her in person once at his going away party before the family moved out to Alabama. It was shortly there after that they started realizing she was having development problems. About a year ago she was diagnosed with GM1 and the doctors told them “GM1 would cause her to slowly lose her ability to walk, talk, and eat; to suffer breathing difficulties, seizures, deafness, and blindness; and eventually, to die before her 10th birthday.”
But the family did not accept this as the fate for their little girl. They found there is a clinical study underway and they are close to human trial, there is just money and red tape standing in the way of their little girl and a cure. So they started fundraising and sharing Clara’s story with the world. Since then they have raised over $1 million for the Cure GM1 Foundation!
Despite all of their success, we are not there yet. And one of the unknowns with this treatment is whether it will reverse the effects or only stop the disease from progressing, so it is important to try to get this cure while Clara is still young.
During the month of September the Cure GM1 Foundation is putting on a friendly run/walk competition to help raise awareness for kids like Clara who are suffering from this disease. Each team earns points for shirts sold, donations, miles tracked on social media, and bonus points for posting pictures in the team shirt.
I’m in the middle of marathon training anyway so it is a no brainer for me to post pictures every day and help Team Clara! If you follow me on Instagram prepare yourself for near daily pictures counting my miles.
How can you help?
Any donations would be much appreciated! Follow this link and pick team Clara!
Like my shirt? Looks like you can still order here
Join the team! If you want to join us and track miles this month with #CureGM1TeamClara. Shoot me an email at firstname.lastname@example.org and I’ll get you set up on our team 😃