These are the symptoms of ALS disease - as ice bucket challenge co founder dies, aged 37

Monday, 23rd November 2020, 4:22 pm
Updated Monday, 23rd November 2020, 4:23 pm

Patrick Quinn, the co-creator of the ice-bucket challenge, has died seven years after he was diagnosed with ALS (amyotrophic lateral sclerosis).

The challenge went viral in 2014, the year after Mr Quinn’s diagnosis, raising approximately $220m for research into the rare neurological disease also known as Lou Gehrig’s disease.

Celebrities, sports stars and tech entrepreneurs, from Donald Trump to Oprah Winfrey, all took part in the challenge which involved a participant filming themselves being baptised with a vessel of ice-filled water, before nominating friends to do the same and raise awareness of ALS.

Sign up to our daily newsletter

The i newsletter cut through the noise

Announcing his death the ALS Association credited Mr Quinn, 37, with popularising the craze, noting “the Ice Bucket challenge dramatically accelerated the fight against ALS, leading to new research discoveries, expansion of care for people with ALS, and greater investment by the government in ALS research.”

Read More

Read More
Could MND and Alzheimer’s cures be closer due to Coronavirus clinical trials?

What is ALS?

ALS Association defines the illness as “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord”.

The disease degenerates nerve or neurone cells responsible for voluntary movement, progressively impacting a person living with ALS’ ability to speak, eat, move and breathe. It’s not known what causes this to happen.

ALS is progressive meaning that symptoms get worse over time, and currently there is no cure or effective treatment to halt the spread of the disease.

The disorder belongs to a wider family of diseases known as motor neuron diseases, ALS being the most common.

What are symptoms of ALS?

Early symptoms of ALS include the following:

- weakness in your ankle or leg – you might trip, or find it harder to climb stairs

- slurred speech, which may develop into difficulty swallowing some foods

- a weak grip – you might drop things, or find it hard to open jars or do up buttons

- muscle cramps and twitches

- weight loss – your arms or leg muscles may have become thinner over time

- difficulty stopping yourself from crying or laughing in inappropriate situations

Who was Patrick Quinn?

Born in Yonkers, New York City, Patrick Quinn, attending Iona College in New York Stae where he was a keen rugby union player.

A month after his 30th birthday Mr Quinn was diagnosed with ALS. According to the ALS Association, Mr Quinn immediately wanted to make a difference to the ALS community following his diagnosis.

He and friend Pete Frates, who also lived with ALS, popularised the trend with their fellow support communities, morphing the local trend started by the friends and family of ALS community member Anthony Senerchia into a global phenomenon.

Pat, Pete and Anthony were named “ALS Heroes” by the ALS Association in 2015 for raising awareness of the disease, while Pat and Pete were also nominated for Time Person of the Year.

Following his death on November 22, ALS Association wrote: "Pat changed the trajectory of the fight against ALS forever. He inspired millions to get involved and care about people who are living with ALS." Frates had died of the disease a year earlier at the age of 34.