Casey Harrell: the climate activist taking on Wall Street – and the muscle-wasting disease that’s killing him

The 43-year-old co-founder of BlackRock's Big Problem knows he may not have long to live, thanks to the neurodegenerative disease ALS. But that won't stop him holding the US's biggest investors to account

Two months into the pandemic, Casey Harrell was diagnosed with the neurodegenerative disease amyotrophic lateral sclerosis (ALS). The 43-year-old climate activist started noticing symptoms in 2019, shortly after the birth of his daughter, Aya. At first, a doctor thought he had a muscle-twitching condition that would go away on its own. Then, he tested positive for Lyme disease, which can mimic the early symptoms of ALS. But, as the world closed down to stop the spread of Covid-19, neurologists concluded his worsening limp and cramps were the early signs of the muscle-wasting illness, for which there is no cure. He could expect to live between two and five more years.

After a short break, Harrell threw himself back into his work, pushing for BlackRock, the biggest asset manager in the world, to use its financial might for the benefit of the planet. This is an all-hands-on-deck moment in human history. Everyone that can should be fighting for a livable climate and a healthy biosphere," says Harrell. My ALS diagnosis has not changed that at all, it has only reinforced within me [the need] to do the work with urgency because my ALS clock may mean that I do not live as long as I had hoped I would."