Content Warning: This section of the guide includes discussion of illness and death.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive and terminal neurodegenerative disorder that affects the motor neurons, or nerve cells in the brain and spinal cord, which are responsible for voluntary muscle movement. As these neurons deteriorate and die, communication between the brain and muscles breaks down, resulting in gradual muscle weakness, loss of mobility, and complete paralysis. Despite many patients retaining intact cognitive functions, ALS ultimately robs individuals of the ability to speak, eat, move, and breathe independently. In Life’s Too Short, Vanessa says, “ALS took this from me, like it had taken so many other things. It was more than just a thief of life. It stole hope. Dignity. Dreams. And it would take until there was nothing left” (97-98).

Doctors and scientists don’t fully understand the causes of ALS. Approximately 90-95% of cases are sporadic, meaning they occur without a known family history or genetic mutation. The remaining 5-10% are familial ALS, caused by inherited genetic mutations. Environmental and lifestyle factors, including exposure to toxins, military service, and head trauma, have also been investigated as potential risk contributors, though conclusive links remain elusive.