Brian Wallach can only move two fingers, but that’s not stopping him from using his voice.
Steadily, he taps out missives on why patients of ALS, or amyotrophic lateral sclerosis, deserve to use whatever short time they have remaining to make their own decisions on drugs. The disease causes motor neurons to degenerate, causing paralysis and eventually death. Since his 2017 diagnosis at the age of 37, he and his wife, Sandra Abrevaya, have fought to improve treatment and the possibility of a cure for patients like him.
In December, they watched as President Joseph Biden signed into law the Accelerating Access to Critical Therapies for ALS Act, or the ACT for ALS, which will help patients access drugs that could prolong their lives. The couple hopes it could even help Wallach, who like many is not eligible for clinical trials for reasons including being too far out from his diagnosis.
