No White Flags: From Football Star to Living with ALS

It was September 25th, 2006; the New Orleans Saints played their first game back after Hurricane Katrina devastated the city. The Atlanta Falcons lined up to punt the ball. As the play started, safety Steve Gleason tore through the Falcons’ line and blocked the punt. The Saints recovered and scored a touchdown. The crowd roared, and Steve Gleason’s name spread throughout the city as the figurehead of the rebirth of the Saints’ spirit. 

However, in January 2011, my cousin Steve Gleason received devastating news. He was diagnosed with Amyotrophic Lateral Sclerosis (ALS). ALS is a progressive neurodegenerative disease that causes muscle weakness and paralysis, eventually affecting the ability to speak, eat, and breathe by impacting motor neurons in the brain and spinal cord. On a molecular level, ALS pathology involves a combination of genetic and environmental factors that lead to protein aggregation (e.g., SOD1) within neurons, disrupting normal cell function and proteostasis. Additionally, neuroinflammation driven by microglia and astrocytes accelerates motor neuron death.

Steve was given 2-5 years to live but is still alive today, 13 years later. He uses a motorized wheelchair to move around and needs assistance with breathing, eating, and talking, which he does through a computer that allows him to type with his eyes. Steve challenged Microsoft to create this eye-tracking technology, which was completed in 2019 and is now used worldwide by those living with ALS.

Although the disease is debilitating, it typically does not affect cognitive function. If you talk to Steve or listen to a minute of his interviews (linked below), that is apparent. He has not lost an ounce of his wit, drive, determination, and love for life. Steve has a family consisting of his wife, Michelle, and his children, Rivers and Gray. Both were conceived via in vitro fertilization, with Rivers born in 2011 shortly after Steve's diagnosis, and Gray in 2018. Being a parent is Steve’s greatest commitment and motivation to continue.

He is an inspiration to many, and he won’t surrender until there is a cure. “No white flags.”

Interesting videos/links about Steve Gleason: 

Blocked punt footage: https://www.youtube.com/watch?v=MYwPmzRs-nc

Recent interview with CBS Mornings: https://www.youtube.com/watch?v=aflvYUOMgic

Amazon Gleason documentary: https://www.amazon.com/Gleason-Steve/dp/B08CS4L48W

Team Gleason website: https://teamgleason.org/

Steve’s book: A Life Impossible: https://www.penguinrandomhouse.com/books/721744/a-life-impossible-by-steve-gleason-with-jeff-duncan/

Resources: 

Brown, R. H., & Al-Chalabi, A. (2017). Amyotrophic Lateral Sclerosis. New England Journal of Medicine, 377(2), 162–172. https://doi.org/10.1056/NEJMra1603471

Mejzini, R., Flynn, L. L., Pitout, I. L., Fletcher, S., Wilton, S. D., & Akkari, P. A. (n.d.). ALS Genetics, Mechanisms, and Therapeutics: Where Are We Now? - PMC. Retrieved September 9, 2024, from https://www-ncbi-nlm-nih-gov.dml.regis.edu/pmc/articles/PMC6909825/