Friday, January 29, 2010

Raising and Racing

So tomorrow night is FiSHing for a Cure 2010 Caribbean Nights Gala. The goal is to raise money for FSH research and bring awareness to the disease. I agreed to be in the film this year. My message is pretty straight forward: The thing I love to do most (athletics) directly makes my condition worse. The one thing that keeps my soul alive, and if given the chance I would devote everything to, progress my weakness. And to hit it home... I am missing the part of my DNA that rebuilds muscle and makes me stronger and faster. What a contradiction.

To be honest I'm really not looking forward to seeing myself on a big screen in front of a ballroom of people. Filming was painless and it was fun working with the guys from Elliott Bay Productions. I'm excited to see how they put everyone's stories together. And again kind of anxious about my message coming across.....

On the athletic front my friend Andy and I are doing a duathlon in a few weeks. It's a sprint (1 mi run/11.5 mi bike/ 1 mi run).... needless to say Andy's doing the run. He is a state record breaker and putting the pressure on! We'll win hands down. : ) My legs are feeling really good and I'm super excited.

1 state record breaker + 1 cripple kid = a competitive age grouper......?

Monday, January 11, 2010

FSHD in the New Year

I am not one for new years resolutions. I don't think you have to have a new number on the calendar to change your mindset or better yourself in any way. I believe setting goals, keeping a positive outlook, and continuing to grow as a person should happen year round. On the contrary I am excited for 2010 as something just feels different. Maybe it's all the news going on in the FSH world and the support of so many people pushing forward to make a change. All of these little steps are starting to add up and become larger movements. Just as Facioscapulohumeral muscular dystrophy has been recognized as the most prevalent form of muscular dystrophy our voice is growing. I feel like it's only going to get louder in 2010.

Fishing for a Cure 2010 Caribbean Nights Gala is coming up on January 30th. It's always refreshing to meet up with a large group of people who know what you are dealing with. The nature of this disease varies so greatly, and although it doesn't look like I have FSH (except to those who know what to look for) my shoulders and hands are shaking under gravity as I lift my hands to type this. Giving a voice and bringing awareness to this "invisible" disease is a great way to start 2010.

The increased difficulty and and pain of getting back to training this season is an issue I have had to dig deep into in order to come out with my glass half full. I will never be a pro athlete, but hey I can still ride a bicycle better than I can walk! : ) But in all seriousness I wanted to thank all the people who work so hard to put this event together. It means so much to me and so many others. Please help support FSH research in 2010 and lets be obnoxiously loud this year!