I am an ALS Warrior

So here is my story about the "Blazeman". Sitting at the post race dinner in Clearwater on Saturday night, Delane and I sit down to eat and listen to the band and awards ceremony. Everything is setup right down on the beach, it is a beautiful evening, not a cloud in the sky with temps dropping into the 60s reuqiring a sweater or coat. Fish and chicken dinner, a little rice, desert of course. Yes my appetite is starting to come back. Can't do another beer though, I am such a lite weight now after starting this Tri thing, 3 beers and I am pretty wasted. I earned those beers today though so they went down just fine. Half way through the ceremony the anouncer tells the audiance he has a treat for us and ask us to watch this short video. The Video is about Jon Blaise - most people now refer to him as "Blazeman". His story is so insperational to my wife and I. Jon was a vibrant young athletic person who always wanted to do an Ironman, for years he played many sports and ran over 200 Triathlons of various lengths, but never an Ironman. However, life would deal Jon a tough battle, one in which he would show how much of an "Ironman" he truly is. Jon was diagnosed with Amyotrophic Lateral Sclerosis (ALS) but more commonly known as "Lou Gehrig's Disease". According to Jon, he knew at that very moment he would fulfill his dream of becoming an Ironman. Jon was awarded not just a chance at any Ironman race, Jon would race in the Kona World Championships in 2005 and boy did he. ALS had already started to ravage his body making it difficult for him to use his hands but this did not stop Jon. The video showed Jon's fight to overcome the ALS deamons and his triumph in becoming the first man to finish an Ironman with full on ALS. Jon's now famous "log roll" across the finish line was just the touch needed to make us never forget Jon. In the past few years I have done many cycling events and running events that were for great causes such as cancer or MS. My wife had ask me many times if I knew of any events that would help with ALS; but with ALS being such a rare disease there just seemed to be very little awareness and focus on this horrible disease. You see my wife and I have witnessed the killer ourselves. I met my wife about 14 years ago sailing on lake lanier. Before long I was meeting the family, a large family of six siblings. Andy her dad had an influence on me almost immediately. Andy and I had some similar interest and he was a geek pretty much like me. Strong and vibrant he had raised a large family and was now getting close to retirement. So like many, Andy and his wife Collette move to Kentucky to build their dream house on the water front. Andy worked tirelessly after retirement and built the perfect house for the two of them. Not much is known about ALS, but they do know that if your family has a certain gene then you will most likely develop the disease at some point in your life. However, at the same time people with absolutely no family history of the disease also get ALS. Andy knew his family had the gene and unfortunately Andy developed ALS and started showing symptoms very quickly just shortly after retirement. Delane and I had decided to get married and had set a date in late fall of that year but watching Andy it was clear he may not make it long enough to see the wedding. Something he told Collette he wanted to live long enough to see. Delane and I moved our wedding to July 5th of that year and Andy was there to see and rejoice in our day of happiness. It was not long before Andy was gone; it was tough seeing someone you had just got to know, go from being a strong and capable person to someone who had trouble speaking. You see ALS is a progressive neuromuscular disease that causes degeneration of some of the largest of all nerve cells, called motor neurons. Motor neurons control the movement of voluntary muscles. This was my first exposure to this disease, unfortunately that was not the end of it. Only two years later Delane's older brother also developed ALS. Darryl was just a great guy as well; this guy would give you the shirt off his back. Darryl and his wife Becky had worked to build up their body shop business. Darryl was known by everyone in town and if you wanted your car fixed right after an accident, Darryl was the guy to go to. Darryl would suffer with the disease for 5+ years before passing just a couple of years ago.

So as I sat listening to the Jon Blais story and watching the video, once again, I thought about Andy and Darryl and thought there must be something more that can be done. After the video they brought Jon and his parents on stage to a standing ovation. Jon spoke about how Ironman and he would now continue the battle for ALS awareness and hopefully one day a cure. Ironman will have one person wear the number Jon wore in his Ironman race in Kona #179 at each of their events. In additon, many ALS warriors came out to help in this year's Kona race by wearing ALS mesages on jerseys and contributing to the cause. More than 50 athletes did the now famous "log roll" just like Jon across the finsih line. Upon hearing all of this, it was like someone tapped me on the shoulder at the point and said. You know "You are now an ALS warrior - Right"? It was obivous how I could help and that is exactly what my wife I plan on doing. From now on, I will support the ALS cause in all my Ironman races and work to raise money and awareness of the disease. Pleas help me keep up the fight! Here is a link to Jon's web site where you can start to help.

ALS Warrior Poet