In November 2017 I decided to join a program called Summit Fit Academy. One of the goals of the program is to help women focus on developing an adventurous lifestyle. The idea is to identify your own summit and then go out there and conquer it. As I began to think of things in my own life that I wanted to overcome, my thoughts turned to my nephew Nolan. He and his parents are such an incredible example of overcomers. Nolan was born with an RYR-1 mutation that has created so many challenges in his life so far. Something as simple as a cold can be very scary! But he continues to grow stronger every day. He is my hero! The more I thought about it, the more I wanted to combine what I was learning in the Academy with an opportunity to help Nolan and his parents reach their summit.
On July 28th, 2018, I will be hiking the Manitou Incline in Colorado. This is considered an extreme trail and is an advanced hike. The Manitou Incline gains almost 2,000 feet of elevation in less than a mile. The trail has 2,744 rail road tie steps with an average grade of 45%, and as much as 68% on the steepest sections. While this is a difficult hike, its challenge is minimal compared to those already faced by my nephew, Nolan, and the many others with an RYR-1 mutation.
My goal with this fundraiser is to raise money for a charity that focuses exclusively on funding research for RYR-1 myopathy, educates physicians on RYR-1, and provides support and advocacy for affected families and individuals. Together with the RYR-1 Foundation, I believe we can climb closer to that summit, and discover treatments, therapies, and possibly even a cure for RYR-1 related diseases.