A Legacy of Strength: Jason Fowles’ Family and the Fight Against ALS

My first encounter with ALS came early—too early. I was only five years old when my father was diagnosed. In fact, all of my memories of my father were of him being sick. As a young child attending half-day kindergarten, I often accompanied my parents to my dad’s numerous doctor appointments at the VA hospital in Salt Lake City, a frequent third wheel, too young to fully grasp the gravity of what was unfolding.

Back then, we simply believed my dad was extraordinarily unlucky. After all, who gets ALS? Despite his strength and resilience, my father lost his battle in 1977.

Decades passed before ALS returned to my awareness, compelling me to act. Over dinner one night, I expressed to my wife a deep desire to do something—anything—to help in the fight against ALS. I was kicking around some ways in which I could help, and we landed on signing up for the ALS walk and start there. My wife also lost her Grandfather to ALS so she was all in as well.  This was maybe a few years before the COVID pandemic. 

Around the same time, we learned of the passing of my half-brother from ALS. This changed everything. Now we know that my father was not unlucky; he just had bad genetics. During the height of COVID, when there was not much going on, I dove deep into family history on my dad’s side. Using some fantastic online family history tools, we opened Pandora’s box for our family and ALS. My Grandmother’s side is where the gene mutation C9ORF72 came from. Now doing more research on ALS and specifically cases with the C9 mutation and working with a great Doctor in Salt Lake, we discovered that my grandmother and two of her siblings had succumbed to ALS accompanied by frontotemporal dementia (FTD), and tragically, each of them had children who had passed from ALS.

So far, we have been able to track back to at least 9 cases across the last three generations that have had to suffer and surrender to this disease due to C9ORF72. In April 2023, my other brother was diagnosed with ALS-FTD.  That’s why my family and I support and help in this cause in any way we can. 

The reach to find someone who has been affected by ALS is so short.  It seems that anyone we speak to knows someone, or has lost someone to this disease.  

My family’s personal journey motivates us deeply to support ALS United Rocky Mountain. Since volunteering and becoming an ALS Ambassador, we’ve been enriched by every event like the ALS Walks and encounters.

I have met some of the kindest and remarkable individuals, those courageously fighting ALS and the caregivers who stand by them with strength and compassion. Each year, I eagerly look forward to helping and participating. I have been blessed to work with such great people at ALS United Rocky Mountain. I will never medically solve ALS, but maybe with this great organization, my contribution in some small way could make someone’s life just a little better.

A special acknowledgment goes to my employer, Nate Wade Subaru/Ken Garff Automotive. They have been an unbelievable resource for support and fundraising. I can’t thank all of the coworkers and management who have opened their hearts and wallets to support me on this journey. Their incredible generosity and support have fueled my passion and our fundraising efforts. Their heartfelt contributions truly make a meaningful difference.

Thank you for allowing me to share our story.

Together, we walk toward hope, care, and, ultimately, a cure.

~ Jason Fowles