34-year-old Ady Barkan has a life expectancy of 2-3 years. He was diagnosed with ALS, the same disease Stephen Hawkin had, in 2016. ALS is a degenerative neuromuscular disease that weakens muscles in the body, eventually paralyzing the individual.
“Death is something that sits very close and omnipresent for those of us who are sick. We survive on a day-to-day basis, not running away from it, but by trying to be comfortable in its presence.” Barkan explained. “ALS affects about 6,000 new people every year in the United States — about 20 times that number around the world. Average life expectancy is very short — two to five years. Most people get it around age 55 or 60. I got it a year and a half ago when I was 32.”
In Hawking’s memory, Barkan launched a GoFundMe, which has raised more than $12,000 for ALS research, surpassing his goal of $7,600.
“In the evening when I saw that Stehpen Hawking has died, [my wife’ deadpanned and said, ‘Oh what’d he die of?’ which made be crack up because kind of the fact that he’d been alive so long has been amazing.”
In addition to his activism around ALS, Barkan continues to fight for issues like health care and immigration, stating, “I think that my hope for the world that [my son] grows up in is that it’s one where our budgets and our public polices reflect the very best in us and not our worst.”