Towards the end of the fall semester last year, Katie, my wonderful co-worker and one of my best friends (and bridesmaid) excitingly asks me if I want to do something awesome with her the following year. Katie has many times led me into pain (she was my strength and conditioning coach when I was playing volleyball) so I was a little nervous in agreeing to this unknown plan. She then tells me that this “fun thing” raises money and awareness for the Joubert Syndrome and Related Disorders Foundation, which helps her family a lot. How can I say no to this?! I timidly ask her what exactly this entails and she informs me we have to RUN 1000 MILES in 2017. ONE THOUSAND! Did you know that you have to average just under 3 miles EVERY. SINGLE. DAY. to get to 1000 miles in a year. I hate running. Absolutely hate it. BUT I love the Munger kids and can’t say no to Katie.
So on January 1, we set up our donation pages and began our 1000 mile trek. Katie and I did many miles together both running and on the stair stepper. We were keeping on track, trying to get extra miles during the week so we could take a break during the weekend. I always enjoyed Katie and my campus runs. It was our time to talk, complain, problem solve, and plan workouts. Then I hurt my foot. I could hardly walk, much less run. I was restricted to the stair stepper, swimming (1 mile swim = 4 miles running), and the bike (5 miles bike = 1 mile run). I also counted when I walked my dogs. We tried to play basketball when my foot and everyone schedules allowed. It has ended up being a pretty wonderful experience overall. I have 50 miles to go, so I am on track to finish before Christmas! This summer we made shirts that have words to describe the characteristics of people who have a rare disorder to sell to raise money as well. We sold 180 shirts and made about $2000 to give to the Foundation! If you would like to donate to our cause, you can give at https://www.youcaring.com/joubert-syndrome-and-related-disorders-foundations-495832
A little bit about Joubert Syndrome and why this is so important to me. This disorder is so rare that most of the information parents have is through other parents experiences in the Facebook group. Joubert Syndrome effects the cerebellar vermis and the brain stem, which are the parts of the brain that connect the balance and coordination of the body, specifically the muscles. In simple terms, it causes delays in the development in the balance, coordination, and muscles in the body. This is not limited to large muscle movements such as walking and moving, but also smaller muscles such as eye tracking and speaking. People who suffer from this can be in a range from being delayed in development to never being able to walk or do many muscular functions. The Joubert Syndrome and Related Disorder Foundation is an amazing organization that raises money to do research, support families, and put on a conference every two years where families can come together and learn and have a support system.
Now why is this so important to me: Munger Madness. Munger Madness is made up of the parents, Larry and Katie and their three kids, all 2 years apart. Peyton (7) is the oldest, followed by Ellie (5) and Kamryn (3). Peyton and Kamryn both have Joubert Syndrome.I have been lucky enough to be part of the Munger’s lives since before Katie got pregnant with Peyton. I have watched these kids grow up and I can promise you there is not a better family out there. These girls steal the hearts of all the athletes and staff at Texas Tech. They love coming to “mom’s work” and hanging out with the girls. They are sweet, caring, and have the most determination I have ever seen out of children. I love these kids and I obviously love this family because I can’t think of many more people I would run 1000 miles in a year for!