Challenge Me to Live Life to the Fullest

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 everyday. “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 anytime!! 

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.

7 thoughts on “Challenge Me to Live Life to the Fullest”

  1. Noel, I appreciate and maybe am envious of you but I see it a little different. I to participate in the ice bucket challenge and didn’t know much about ALS then or after. Then one horrific day in December 2018 I heard my Neurologist tell me I think you have ALS, Like you, it too changed my life forever, not that very minute but over the next 3 months as my diagnosis was confirmed I did everything I could to learn as much as I could about this insidious disease. What I learned was very scary, not so much for me but as I have had a good life (and I hope that continues) but I was scared for all those young families that are stricken with ALS. I can’t imagine being 30 years old, graduating from Medical school (with a big student loan) a small child with a second on the way to be told “I am sorry, you have ALS” I am scared for them. So my life is focused on advocating any way I can for the victims of ALS. We must find a cure, we need to find it now.

    Good luck to you and all other ALS victims and their families, we can and will beat this.

    David Doane, Bucksport ME


  2. What a wonderful story. Like you we were really unaware of this vicious disease at the time of the ice bucket challenge, but it all changed on Feb 9,2017, when my big strong son was told, you have ALS, no cause, no treatment, no cure, fatal! All in one sentence. It changed our lives forever.


  3. I love the strength and the passion to live and not die God grace and his mercy can take us to a place where noone can understand unless you have tested the storms of life. My son got diagnosed four months ago with AlS he is 36 years old and his life has been totally turned upside down but his faith and strength is the most awesomest I just thank God for keeping his hands o. Him.


  4. You made a comment:
    “high quality care more available for people living with this disease. ” Maybe if you have a brick of Gold Bullion to pay for all the medical aids, medications and caregivers.
    It is costing so much as the medical community does not cover all the treatments.
    Caregivers are not covered by the medical community.
    The newest medications that the government has just approved is such a hassle to get for every treatment. And the cost for such treatment!!
    We, the ALS families need more help and support!!
    And did I mention the paperwork!!!
    The care for ALL ALS patient should be free as there is no cure.
    The scientists need to do more!! You have had 75 years to research this disease.
    Find a cure!!


  5. Way to go, Noel!
    Yes, I’ll challenge you to all those things.
    I’m also challenging myself – to KICK BUTT KICK ALS in a walk to defeat ALS in October.
    Keep up the good fight!


  6. I am glad I was able to read those words and see those great people whom are living the day to day challenges that caused by ALS that are doing everything they can to stay positive and keep going with thier lives . I can not describe how we felt when this horrible disease was diagnosed with my mother in 2018 . It true one can feel helpless, hopeless and emotionally deprived but certainly, giving in and crying is not an option specially as care givers we need to be strong and compassionate.


  7. Thank you for your beautiful words. My brother died of ALS 27 years ago. He was diagnosed at 20 when he was a nationally-ranked collegiate wrestler (aka muscular meathead). He died at 30 after he blossomed into a poet, short-story author, screenwriter, sculptor, board game creator, and organic gardener. Family and close friends played supporting roles in the script of his life. When he lost his ability to walk, he fell into a deep depression and wanted to die, but after he pushed through that darkness, he began to and did live every day to the fullest. When it became clear the end was close, in the most heart-wrenching scene I might ever witness, he asked our dad for permission to stop fighting. Not previously knowing his permission was necessary, our father freely gave it. Three months later, in the early morning hours of the winter solstice, my awesome big brother, Daniel Vico Fleck, passed peacefully in his sleep. He taught me, our sisters, and our friends to appreciate everything we have and never take anything or anyone for granted.


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