It seemed pretty pointless at the time, but eight years on, the dumping of buckets full of ice cube-filled water on people’s heads is responsible for prolonging many lives.

The ALS Ice Bucket Challenge that went viral in 2014 was a ‘fun’, ‘daring’ and ‘must do’ trend that had millions of people and celebrities filling social media pages with videos of them dunking their heads with ice water in order to solicit donations, then nominating others to do the same. If a nominated person did not complete the challenge in 24 hours, they had to make a $100 donation to the ALS Association.

More than $115 million raised from the Ice Bucket Challenge enabled the ALS to increase its annual funding for research around the world by 187 per cent, and through the donations, ALS researchers have made tremendous scientific advancements and investments in disease research.  

Of the donations raised by the challenge,  ALS invested $2.2 million into researching and developing the new FDA approved drug, Relyvrio (AMX0035). The drug produced by Amylyx is an oral, fixed-dose combination therapy designed to slow disease progression. Relyvrio can be administered by mouth or by feeding tube. 

Dr Gethrin Thomas, the executive director of research at MND Australia, told Central News he is hopeful the new drug will be approved by the The Therapeutic Goods Administration (TGA). 

When you’ve got a life expectancy of two to three years, 10 months is a lot of extra time.

“I can’t make any predictions of what the TGA is going to do as they make their decisions purely on the scientific evidence to them. However, I am hopeful as they’re more likely to approve it since the FDA did, which to me improves the chances,” Thomas said.

“There is a two-step process. They must approve the drug, say yes and we believe it’s safe and effective and the second step is, are we going to subsidise this drug?

“So that’s really where we (MND Australia) come to the table. And hopefully, we can provide that support and that evidence to persuade the government that they should be subsidising this drug.” 

ALS (amyotrophic lateral sclerosis) is a type of rare motor neurone disease (MND), a degenerative nervous system condition that affects approximately one in 11,434 Australians. Types include ALS, PBP, PMA, PLS, and SBMA.  

With MND, the motor neurone nerves that carry messages from the brain to the muscles become damaged and start to die. This leads the muscles to weaken, stiffen and waste, which can affect how to walk, talk, eat, drink and breathe. It is life-shortening and incurable. The speed at which the disease progresses varies for each person. The prognosis for most patients is three years after their diagnosis.  

Stephen Hawking, one of the best-known scientists is one of many influential people who lived with ALS. Hawking, who died at age 76 lived with ALS for 55 years. 


In 2020, The ALS Association submitted over 50,000 signatures to the FDA calling on the agency to approve Relyvrio after a successful phase 2 trial. The trial enrolled 137 people with ALS in 25 medical centres and showed that AMX0035 was well-tolerated and there were no major safety concerns. AMX0035 significantly decreased the rate of decline in the Revised ALS Functional Rating Scale. Analysis of the data showed that AMX0035 extended life by 10 months and reduced the risk of death, tracheostomy or permanent assisted ventilation.

 The TGA is the medicine and therapeutic regulatory agency of the Australian Government that regulates the quality, supply and advertising of medicine. For Relyvrio to reach Australian patients, it must be TGA approved. 

To support Amylyx, the producer of Relyvrio, MND Australia helps lobby the government to have these drugs implemented and subsidised under the pharmaceutical benefits scheme (PBS).  

Riluzole was the first TGA approved drug implemented in Australia, shortly after being FDA approved by the US in 1995. It has been used to treat motor neurone diseases as it delays the onset of ventilator dependence in people, which increases survival by two to three months. Although Riluzole has been effective for some, Relyvrio is expected to be more effective. 

“I do think the new drug works, I mean there’s a lot of debate about the degree of the effectiveness of it, but the numbers are quoting prolonged survival for 10 months,” Dr Thomas said. 

“When you’ve got a life expectancy of two to three years, 10 months is a lot of extra time. It’s not just the survival factor, It’s the quality of life. So, the progression of the disease is slowed down, so you get to have greater mobility.” 

Many sufferers are hopeful this drug will change their lives and help them get a better quality of life with the time they have left.  

I will never forget those words ‘you have motor neurone disease this is a fatal disease’.

“My sister was diagnosed with ALS 11 months ago and it was the biggest shock of our lives,” an anonymous source told Central News.

“It has been hard to watch a healthy 54-year-old who regularly went on a morning run no longer be able to do so. This drug could change our lives and give us more time with the person we thought we had a whole lifetime to be with. As time passes, so will she, and all we need is some more time.”

Therese Alexander known as ‘Teed’ has gained a large Tik Tok following and has taken her viewers on her  journey in hopes of raising awareness of ALS.

Teed has a YouTube channel where she shares her journey through her series ‘Teed Talks’, with topics like ‘Talking about death with children’ and ‘How to live knowing you’re dying’. 

“I will never forget those words ‘you have motor neurone disease this is a fatal disease’,” Alexander said in a TikTok video last August. “That was a year ago and I never would have believed what motor neurones disease could take from me, but what it hasn’t taken is my attitude.”

Teed, who was diagnosed in 2021, was admitted into a hospice with a prognosis of a few weeks, and passed away with her family at her side last week. 

“It’s been a very tough couple of weeks, the doctors are saying we should be thinking weeks rather than months, but who knows,” she announced to TikTok, in one of her last posts.  


What is it?

 The symptoms of motor neurone disease begin gradually over weeks and months. They include: 

  • A weakened grip, which can cause difficulty picking up or holding objects 
  • Weakness at the shoulder that makes lifting the arm difficult 
  • A”foot drop” caused by weak ankle muscles 
  • Dragging of the leg 
  • Slurred speech (dysarthria) 

Although MND is incurable, it does not make it untreatable. Many symptoms can be managed by seeing a physiotherapist, occupational therapist, dietician and other experts. There are also many ongoing clinical trials in Australia.                                                                                                       

According to the Advance Rehab Centre (ARC), a prospective cohort study found that people with MND who were followed up by multidisciplinary clinics lived on average 7½ months longer than those who did not. 

Anna Biddiscombe, a neurological physiotherapist at the ARC told Central News she coordinates with other health specialists to give those with MND the best possible care. 

“Coordinated care means the best outcomes for our clients, survival benefit, fewer hospital admissions, increased use of adaptive equipment and enhanced quality of life,” Biddiscombe said.  

She added therapy is extremely beneficial for diagnosed patients. 

“Therapy has a wide range of benefits for people with MND and helps clients achieve what is important for them,” she said. “This may include being able to walk, access the community with their family or participating in a particular leisure activity which has a huge impact on clients physical and mental wellbeing. 

“As a progressive disease, people with MND will continue to lose strength and function. There is evidence which suggests that having coordinated multidisciplinary care, including therapy, can prolong life and is recommended by all recent MND guidelines.”

There is research that shows that people with MND that attended multidisciplinary clinics have better outcomes.

Occupational therapy is a health profession that works hand in hand with motor neurone disease patients to maximise their ability to participate in everyday functional tasks. Occupational therapists take into account the physical, sensory and thinking skills required to complete activities important for independent living. 

Kylie Christel, an occupational therapy consultant at the MQ Health Motor Neurone Disease Service, said: “The term occupation is used to describe everyday things we do in our lives, and what makes our lives meaningful.

“These activities include taking care of oneself, participating in hobbies, interests and social events, working and volunteering. 

“As occupational therapists we have extensive knowledge of the diverse range of assistive technology available, and will assist a person with MND to address their needs. This may be voice activating your computer, a hoist to lift you in and out of the front seat of your car, a special mattress, or a custom made powered wheelchair. We also assess the environment, and advise on home modifications, from the installation of a ramp, automated blinds, or a bathroom modification.”

Macquarie University Centre for MND Research has assembled the largest research centre in Australia – focused solely on finding the causes of MND and developing therapies to cure it. Led by Professor Dominic Rowe AM, MQ’s multidisciplinary team of specialists provide expert diagnosis and management of all stages of MND. 

According to Dr Christel, the patients that come into the clinic will spend the afternoon with the neurologists, the clinic nurse, the respiratory specialists in the OT, physio, the speech pathologist, dietitian and sometimes will see some of the other clinic staff as part of the trials.  

“There is research that shows that people with MND that attended multidisciplinary clinics have better outcomes,” said Christel.  

Macquarie is also undertaking two clinical trials designed to significantly prolong the survival of patients. The Lighthouse trial is repurposing a HIV therapy to see if it can slow or stop activation of the most common form of MND. The second trial is testing an Australian developed novel compound called Copper-ATSM to try and redress the imbalance of metals that occurs in the brains of patients with the familial disease. MQ also hopes to commence a third trial in the near future.  

Donations to MND Australia or MND Research Australia go towards improving the lives of people living with motor neurone disease. If you would like to help fund a cure for Australians with MND, donate here.  

Main image Chris Rand/Wikimedia.