Raise Awareness for Rare Genetic Disorders

Hey! My name is Jerry Hughes.

My LIFE GOAL is to raise awareness and inspire those with rare diseases or genetic disorders. Anything is possible if you believe in yourself and do not to let anyone get you down. Don't let your diseases define you. Instead, have them make you better and stronger and show the world that you can be like everyone else. I also have a post on my Facebook a lot more info.

This is very close to my heart. The disorder is very aggressive and, if not diagnosed, the life expectancy is 35-45. It took my Dad's life at 33. He didn't know he had the disorder till the previous year and unfortunately, it was too late. It had spread to cancer throughout his body. When we found out it was genetic, we then then found out my brother, my sister and I had the same disorder. We all went through a series of major surgeries. During this time, someone heard of our story and sponsored us for a dream vacation through Help Fill a Dream.

When my son was born, I was out of shape with no direction. He inspired me to show him and my other son that they can do anything they want, even if they get the same disorder. They have 50% chance of having it and we won't be able to find out till they are 7 or 8. My fitness journey started with bootcamp, then I did Fight for a Cause, which is an event with everyday people, who train for 8 weeks to go in the ring and face their fears. It's a life-changing experience. From there, I played hockey. Then, I entered a 10k and my time was 44:43. A month later, I entered a half marathon and my time was 1:40:45. Both runs were done without training. I heard these are not normal times for 1st time 10k and half marathon runners and that I had a natural ability. After a few months of training on my own, I realized I needed a running coach. After some research, I found Yana Hempler. She is a running coach, personal trainer, run clinic leader, among many other things. Since I have been working with her,  I'm achieving goals I never thought possible. Now, we are doing a 60k run from Duncan to Victoria July 26. This is only the start of my runs, marathons, ultra marathons all in support of Help Fill a Dream.

Thanks, Jerry Hughes

 "Inspire the world one step at a time"