Pete Frates, whose battle with Amyotrophic Lateral Sclerosis (ALS) inspired the ice bucket challenge which shook the internet and raised millions for research has died aged 34.
Everyone from President Donald Trump, Bill Gates to cartoon character, Homer Simpson participated in the internet phenomenon when it exploded into life in 2014.
The challenge, which saw participants drenched by a cold bucket of water filled with ice before nominating others to go through with it too, took social media by storm largely thanks to Mr. Frates, a former athlete and college baseball player.
Frates was diagnosed with ALS also known as Lou Gehrig’s disease and motor neurone disease in 2012 at the age of 27 after noticing that a wrist injury sustained while playing baseball was not healing properly.
Two years later, he helped draw attention to the ice bucket challenge and it has since raised about $220 million worldwide, with famous faces including George W. Bush and Tom Cruise among those who took part.
The money helped researchers identify a new gene associated with ALS, which is a rapidly progressive fatal neurological disease which affects nerve cells in the brain and the spinal cord.
The discovery, known as NEK1 now ranks among the most common genes which contribute to the disease and provided scientists with another potential target for therapy development.
The Boston-born Frates became paralyzed as the disease progressed and had to use a wheelchair . He lost the ability to talk and had to be fed through a tube.
At the time the ice bucket challenge was at its peak, he said: “The ALS ice bucket challenge represents all that’s great about this country. It’s about fun, friends, family, and it makes a difference to all of us living with ALS.”
Frates whose funeral arrangements are yet to be announced is survived by his wife, Julie, daughter, Lucy, parents, John and Nancy, and siblings Andrew and Jennifer.