How I Embrace the ALS “Challenge Me” Campaign

By Noel Levasseur
Person living with ALS

Five years ago, I joined millions of people around the world and took the ALS Ice Bucket Challenge. The Challenge took America by storm and fueled the biggest social media movement in history. At least 17 million people uploaded videos to Facebook to raise awareness and donate to ALS research, and over $115 million was raised for The ALS Association. 

At the time, many of us who took the Challenge knew little about ALS, myself included. I personally had no idea, other than Lou Gerhig had died from it. We also had no idea about the challenge ALS had in store for us. 

Three years after taking the Ice Bucket Challenge, in November of 2017, I was diagnosed with ALS. My life was forever changed. Trust me when I tell you, an ALS diagnosis changes everything in the blink of an eye. Every day moving forward, I would now face the biggest fight of my and my family’s life! A cruel disease with no cure... ALS. 

When I got diagnosed, I had two options. I could lock myself in the bedroom, cry and give in, or I could fight, do whatever I could to help the cause, and live my life to the absolute fullest. I’m a fighter, so I decided to fight with every breath I have left and make the most of every day. “Get busy living or get busy dying.” 

The ALS Ice Bucket Challenge raised awareness of the disease and led to progress in the search for better treatments and a cure. Since the Challenge, we have identified five news genes connected to ALS and made high quality care more available for people living with this disease. 

These are great victories, but we still have a lot of work to do. That’s why I’m asking you to rise to the Challenge and do whatever it takes. We’ve got a big planet, people. We have to spread the word far and wide. We need to reach beyond our “Villages” and our ALS Community. You think I can’t inspire more people to join our fight? Just Challenge Me! 

ALS will never define me, NEVER! ALS might take away my body, my ability to speak, but it will never take away my passion for life or my spirit. I am going to keep trying to be the best husband, the best dad, the best grandpa, the best friend, and the best member of Our Village I can be, while I still can be and I am going to have a hell of a lot of fun doing it! 

Challenge me to laugh. 

Challenge me to love. 

Challenge me to make as many memories as I can with my friends. 

Challenge me to keep fighting for a cure. 

Then ask yourself what you are willing to do. Join me in the Challenge Me campaign, to continue to keep fighting for not just me, but for all people living with ALS in our community. Tomorrow is not guaranteed peeps and this horrific beast of a disease, known as ALS, can strike anyone at any time!! 

I may have ALS, but ALS sure the hell doesn’t have me!

The Challenge Me campaign picks up where the ALS Ice Bucket Challenge left off. This time, the ALS community is challenging everyone to do anything and everything they can to cure ALS. Click here to learn more.