Scott Marsell

I am the youngest of three, and I have quite the extended family with nine step brothers and sisters, of which I am still the youngest. My friends are my family as well. I have such an incredible support system around me that I am so grateful for.

Just before my 50th birthday, I got those words that no one wants to hear: “You have ALS.” Getting to this diagnosis was a very long journey. My symptoms started in 2016, and we initially thought I just had a pinched nerve in my low back. After many hours of PT and back surgery, it was back to the drawing board. I was going to the gym three days a week and never saw improvement.

In 2021, I decided it was time to get back to the doctor. We ran the gauntlet on tests before my neurologist recommended that we see a specialist. A month later, ”you have a motor neuron disease called ALS.” Unfortunately, I was not surprised – devastated, but not surprised.

Within a short period of time, my support system and I jumped right into planning fundraising for ALS research. We have been running fundraisers for years already, so this was an easy decision. Thus my relationship with ALS United Greater Chicago began, and so did a lifelong friendship with Peggy O’Connor.

I often get asked where my strength comes from, and that’s an easy question to answer. It all starts with Mom and trickles down to everyone in my support system. Without all of them, I couldn’t have the outlook that I have. When I get down, there is always someone to pick me up, from my wife Sarah to a sibling to my core group of friends. I am a very lucky man.

ALS will never define me, and I hope that I leave a lasting impression on everyone about constantly fighting no matter what. And the only thought of being remembered for ALS that I want is that we cured ALS in my lifetime. And we will find a cure. Hence our group name Scoots for the ALS Cure. My friends call me Scoots, but the fundraising name is about all of us. Look us up on Facebook and join the fun. #noteverALS