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Ice bucket challenge helps to fund FDA-approved motor neurone medication

Leonardo DiCaprio, Benedict Cumberbatch and Kim Kardashian all took part in the viral challenge.

Leonardo DiCaprio, Benedict Cumberbatch and Kim Kardashian all took part in the viral challenge. Photo: YouTube/TND

The year 2014 was the year of the viral social media challenge.

From the horrendous milk challenge to the cough-inducing cinnamon challenge, it was near impossible to scroll through social media without encountering a new viral stunt.

But one with a greater overarching message smashed all the others out of the park in 2014, named the ice bucket challenge.

For those unfamiliar with the viral trend, here’s how each video would typically play out.

Before pouring a bucket of ice water over their heads, each participant would dare a handful of friends to participate in the challenge.

They would then drench themselves in freezing water, with hilarious reactions usually to follow.

Although it might seem like a simple concept, the ice bucket challenge took the world by storm.

Seventeen million internet users and celebrities all around the world took part in the challenge, from Bill Gates and Kim Kardashian to Hugh Jackman and Donald Trump.

The challenge aimed to raise money from those who participated, calling on people to donate to the US’s ALS Association.

Some participants purely took on the challenge for a bit of fun, but many participants did donate, with the funds raised making a difference years later for those struggling with the life-shortening disease.

The ALS Association announced on Saturday that $US2.2 million ($3.38 million) raised from the ice bucket challenge were used to fund the development and trial of a new FDA-approved drug.

The drug, named Relyvrio, is an oral treatment for those with amyotrophic lateral sclerosis, better known in Australia as motor neurone disease.

MND is a progressive neurodegenerative disease that gradually affects nerve cells in the brain and spinal cord, and eventually causes loss of muscle control.

Through clinical trials, Relyvrio was found to slow the loss of physical function in people living with MND.

Amylyx Pharmaceuticals, the company behind the game-changing drug, said the FDA’s approval was a “major step” towards ending the suffering of those with neurodegenerative diseases.

“We want to give a heartfelt thank you to the broader ALS community, including healthcare professionals and those living with ALS, for their guidance, support of our clinical programs, and for sharing their experiences with us,” Amylyx co-CEOs Joshua Cohen and Justin Klee said.

“Their stories inspired us and helped our team to better understand the ALS clock, instilling in us a deep sense of urgency that will continue to drive us forward. This is just the beginning and there is much more to be done.”

The FDA said it “remains committed” to developing additional treatments for the rare disease.

How it all began

Former college baseball player Pete Frates, former athlete Pat Quinn and civil engineer Anthony Senerchia Jr, who all had MND, are credited with popularising the challenge.

The three activists completed their own versions of the challenge, before it began to receive mainstream media attention following attempts by morning television hosts and a gaggle of celebrities.

The challenge also swept Australia, with more than 60,000 Aussies taking part in the challenge both online and at sporting events around the country.

By the middle of 2014, an estimated $220 million was donated to ALS and MND foundations around the world.

The money helped speed up research in Australia and worldwide, leading to the development of new treatments, such as Relyvrio.

Pete Frates, a former baseball player credited with popularising the challenge, pictured with his wife Julie at an NFL football game. Photo: AAP

Frates, Quinn and Senerchia Jr have all sadly died from the disease. However, their legacy lives on.

The challenge had a recent resurgence on TikTok, with videos using the hashtag #icebucketchallenge gaining more than 180.5 million views.

MND Australia is still committed to annual fundraising, and uses the Ice Bucket Challenge as the key focus.

MND awareness has long been championed by former AFL footballer Neale Daniher, who founded FightMND – the nation’s leading MND foundation.

FightMND’s annual Big Freeze events at the MCG are attended by tens of thousands each year.

Combined with the sale of Big Freeze beanies, donations and community fundraising, it brings millions to combat the disease each year – including a record $19.8 million in 2022.

Local push

The news of Relyvrio’s approval in the US sparked a response from MND Australia, which says it has begun a push for the drug to be approved by Australia’s Therapeutic Goods Administration.

“This is great news for the MND community as it is the first new treatment since Edaravone was approved in 2017 (this treatment has not been approved for use in Australia) and Riluzole in 1995,” MND Australia said.

“The next steps will be pricing for the treatment and approvals in other countries, including Australia. Current pricing in Canada is in excess of $200,000 a year, so discussions with authorities over subsidising costs will be critical.

“MND Australia have previously made contact with Amylyx around encouraging the company to apply for TGA approval for the treatment to become available in Australia. We will be renewing these discussions following the FDA’s positive decision.”

The drug could be available to Aussie MND sufferers within a year, if Amylyx promptly applies for TGA approval.

According to a 2018 report, drug approvals in Australia take a median of 391 days from application, compared to 304 days for the FDA.

However, if the drug is introduced to the TGA’s priority review process, it could be approved in as little as 150 days.

Topics: Science
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