THE BLOG
03/01/2013 12:03 pm ET | Updated May 01, 2013

A Cure With Some Magic and Jordan

The decision was made: something had to be done. There was no way I was going to sit by and not make some noise. It had only been a couple of months since I had been diagnosed with ALS, but I was constantly reminded of how few people have actually ever heard of the disease. To say this was frustrating is the PG version of my feelings toward the issue. Those feelings though were what sparked the creation of A Life Story Foundation.

The first thing I realized was that there was no way I could do this alone. Thankfully, not only do I have a lot of friends and family who were willing to help, I have insanely intelligent and successful friends and family. This endeavor would be just like starting a company of my own. Knowing that, I fully believe in the adage of surrounding yourself with people who are smarter and more talented than yourself.

I have friends who work at global advertising agencies, friends who are extremely successful entrepreneurs, and, not to mention, a mom who was one of the highest ranking female officers in a company with over 45,000 employees. It sounds funny to say this given the severity of ALS, but as this team came together, the momentum was now in our favor.

Our team was in place, now all we needed was a name. Unfortunately, being 30 years old when I was diagnosed really cut into my time of becoming a household name. (Although, I certainly did try. Here is a glimpse into my short-lived career as a TV host) It made little to no sense to call it the Kevin Swan Foundation. After all, who the hell is Kevin Swan? We knew that not only did we have a long road ahead of us in creating a nationally recognized charity organization, but that it was also important that people see the letters ALS as often as possible. Our internal placeholder was actually "Another Live Strong" before we decided on "A Life Story." We knew we did not want to be just some mom and pop shop doing car washes and bake sales. I wanted and am currently working toward making A Life Story the Air Jordan of the nonprofit space.

And speaking of Michael Jordan, another NBA great came up frequently in our initial brainstorming sessions: Magic Johnson. Here is a man who over 20 years ago was diagnosed with, at the time, a death sentence: HIV. He's absolutely one of my heroes I plan on meeting one day. Not only did he give a face to a disease, he completely changed the world's perception of it. Fortunately for me, all I have to do is create the world's perception of ALS. No big deal, right?

I feel absolutely blessed that I have an All-Star team surrounding me and hopefully it continues to grow. If we are able to make ALS a household name, I promise you, treatments and ultimately a cure will be inevitable.

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