Our family has been involved in ALS awareness, advocacy, and fundraising for 17 years. It’s hard to remember life before ALS involvement. Our story is documented on the Cure for ALS website, if you don’t already know how we got here. I admit that at times I get tired and frustrated; tired of trying to get the public to understand ALS and how underfunded it is, and frustrated that, though there have been advances in treatments and technology for PALS (people with ALS), there is still no discovered cause and no cure. In those weary times, often something happens to bring my drive and energy back to keep fighting for ALS families and the other day, something happened.
Mike Reilly is “The voice of Ironman” to anyone who knows anything about Ironman triathlon. When someone crosses the finish line after the 2.4 mile swim/112-mile bike/26.2 mile run that makes up the Ironman distance, they want to hear Mike’s voice say, “YOU are an IRONMAN!” Mike said those words as Jon Blais crossed the finish line in Kona, HI at the Ironman World Championship in 2005. Blais was an age group triathlete and the first person with ALS to complete an Ironman distance race.
Mike brings positive energy to anyone and everyone who has the opportunity to meet him or just be in his presence. He brings that energy to his podcast, Find Your Finish Line. Listening to his most recent episode, Be Brave – Andrea Peet with Meredith Atwood was one of those moments I mentioned above that nudged in me to charge forward with renewed energy to rid the world of ALS.
Andrea is an endurance athlete who was diagnosed with ALS in 2014. Andrea decided to keep moving forward in her life and to LIVE each day to the fullest. She didn’t stop racing and she just accomplished her goal of running a marathon in all 50 states – yes, you read that right! Along the way she’s raised money for ALS research and created the Team Drea Foundation. I encourage you to listen to her journey.
ALS is still considered an “orphan” disease, which means it is a “disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.” In the past 65 days, I’ve had four people in my inner circle of friends tell me of loved ones who have recently been diagnosed; that doesn’t fall into the “orphan” category.
Help me be a voice for those who no longer have one – spread awareness for ALS and support any of these organizations with a financial gift.