I never considered myself an athlete. Growing up, I had juvenile asthma, and struggled to run “the mile” in high school. The furthest extent of my physical activity would be short sprints while playing on the high school tennis team. It’s easy to attribute my lack of  athleticism to having a rare blood disorder.  I always hated my own body’s limitations of what I wanted to do vs. what I was actually capable of doing.

Two years ago, an advocacy group for rare genetic diseases called Global Genes had their inaugural 5K run. “Denim Dash” as it is called,  is a race you can run, walk, bike or swim at your own pace, during a certain week of the year.  This event was my first glimpse into looking at limitations differently. I decided to participate in it, and living in the San Francisco, Bay Area, I did mine over the Golden Gate Bridge.  It didn’t matter how long it took, where I did it, what time of day…just that it I finish and have the chance to create conversation.  By the end of it, I had done something I had never done in my life, and that felt amazing.

How many people run marathons (Including half, 10K, and 5K events)? A lot, is the answer. Now, how many of them have rare diseases? Far less, I’m sure. This is where the idea of Next Level Advocacy took root. Someone told me after my first 5K event that doing so with a chronic illness took things to “the next level”, simply because being able to do so had deeper meaning to me. That got me thinking about fun ways to raise awareness for rare diseases that go beyond the norm of advocacy work. Running events, modeling, performing arts and even body art (if your body will allow it) with the intent to raise awareness to a cause or rare condition is what Next Level Advocacy about.

At the end of July, I will be participating in the San Francisco Marathon 5K event. I love San Francisco. It’s beautiful, iconic, and full of culture. I forget that my life is far from normal when I’m there. There’s something therapeutic about the scenery. I believe that if you’re going to do something, do it with a purpose. I didn’t want to run it just for bragging rights or to cross off a bucket list. Which is why it brings me great pleasure to be running for Rare and Undiagnosed Network. Living undiagnosed for over two decades, I have been in that void. I know the feeling: It’s like trying to catch your breath, just trying to make sense of what your body is doing.

For me, it’s not about beating the clock, it’s about beating the odds. Being well enough to run is not something I will ever take for granted. I’m going to rock this out for as long I can!  I’m still sick, but I can walk. If I can walk, then I can run.  If I can run, then I can run for those who can’t, and I can raise awareness so that others might do the same. I still wouldn’t consider myself an athlete, I’m just a guy trying to take it to the next level.