Inspiration for the ‘Ice Bucket Challenge’ dies aged 34

The inspiration behind arguably the most successful and well-known social media challenge has died at the age of 34.

With his part in popularising the the viral ice bucket challenge, Pete Frates helped raise tens of millions of dollars to help fight Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease after the New York Yankees great who suffered from it.

ALS is a degenerative disorder that affects specific nerve cells of the spinal cord, brain stem and brain. It belongs to a group of disorders known as motor neuron diseases, and results in the gradual loss of voluntary muscle control, leading to paralysis.

Pete Frates with his partner (left) and Boston Red Sox star David Ortiz. Source: Twitter

Those participating in the challenge raised awareness and money by sharing a video on social media of them dumping a bucket of ice and water over their head and challenging others to do the same or make a donation to charity. Most people did both.

Harnessing the huge reach of social media, the former Boston College star baseball player helped popularise the notion of using an internet challenge as a way of focusing attention on fundraising for an important cause.

“Upon my diagnosis, it became abundantly clear that my calling was to raise ALS awareness and to fight for a brighter future for all those affected today and those yet to come,” Mr Frates wrote in a 2014 column for sports publication Bleacher Report.

Pete Frates with his 4-year-old daughter Lucy and wife Julie by his side. Source: Getty

“Today Heaven received our angel: Peter Frates,” his family said in a statement shared by his former university Boston College.

“Remarkably, Pete never complained about his illness. Instead, he saw it as an opportunity to give hope to other patients and their families. In his lifetime, he was determined to change the trajectory of a disease that had no treatment or cure.”

The ice bucket challenge actually began in 2014 when pro golfer Chris Kennedy challenged his wife’s cousin Jeanette Senerchia, whose husband has ALS.

ALS patient Pat Quinn of New York picked up on the idea and it started to spread. But when Mr Frates and his family got involved, the phenomenon exploded on social media.

Pete Frates is introduced before a Boston Red Sox game on October 1, 2016 at Fenway Park in Boston. Source: Getty

Thousands of people participated, including celebrities, sports stars and politicians — even Donald Trump before his election and cartoon character Homer Simpson. Online videos were viewed millions of times.

The challenge has raised about A$322 million worldwide, including A$168 million alone for the Washington-based ALS Association.

Mr Frates is survived by his wife, Julie, daughter Lucy, parents John and Nancy, and siblings Andrew and Jennifer.

- With AP