FightMND’s annual Big Freeze event will be held during the AFL match between Collingwood and Melbourne at the MCG on June 13th.

Motor neurone disease (MND), sometimes called amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, is a global problem.

According to the International Alliance of ALS/MND Associations, MND affects over 350,000 of the world’s population, and kills more than 100,000 people every year.

It became widely known following the affliction of the late renowned physicist, Stephen Hawking.

The disease is invariably fatal, with the average life expectancy of someone who has MND being just 27 months. So what is MND and what are the symptoms?

Firstly, MND is a term used to describe a group of diseases that affect nerve cells called “motor neurones”, which carry messages from the brain to our muscles via the spinal cord, allowing us to do for-granted things like walking, talking and breathing.

When a person is afflicted with MND , the nerves become damaged and start to die. This results in muscles becoming gradually weaker from the lack of use, and they eventually waste away.

Currently, there is no cure for MND.

FightMND fights the disease

While MND is life-shortening, research has shown that early and timely treatments can help patients lead a better and longer life. One Aussie foundation that’s been at the forefront of this research is the charity organisation, FightMND.

Founded in 2014 by former AFL player Neale Daniher, FightMND was established with the purpose of finding effective treatments, and ultimately a cure for MND.

A former Essendon player and Melbourne Football Club Coach, Daniher needs little introduction.

Debuting for the Bombers in 1979, Danihner is one of four brothers making up part of the Daniher football dynasty.

His football career, although plagued by injury, was well respected as he won widespread praise and accolades for his actions both on and off the field. But in 2013, Dahiner was diagnosed with MND.

Unable to speak now, Dahiner’s continued determination to live life to the fullest has been a tremendous inspiration not just for MND sufferers, but also for millions of Australians.

CEO of FightMND, Dr. Fiona McInstosh, said her organisation is pulling out all the stops to find a cure.

“Since 2014, FightMND has invested nearly $60 million into world-class MND research to find effective treatments and a cure – including 12 clinical trials and 22 drug development projects,” Dr. McIntosh tells Stockkhead.

“As a result of this investment, Australians living with MND have more opportunities to participate in research or clinical trials than ever before.

“By funding innovative research and the infrastructure that underpins it, FightMND are helping to accelerate progress towards a cure.

“We are driving discoveries forward by building capacity and capabilities across the whole MND research sector.”

“Beanie On, Play On”

This year will be the eighth consecutive year that FightMND will feature in the AFL’s ‘Big Freeze’ match.

The Queen’s Birthday event is one of the biggest on the football calendar,  where AFL athletes and supporters band together to help raise funds for FightMND.

This year’s event will be held during the half time break of the match between Collingwood and Melbourne, played at the AFL’s “home of football”, the Melbourne Cricket Ground.

It will once again feature the “ice challenge”, where past and present athletes take a slider plunge, and splash into a pool of freezing water.


It’s “Beanie On, Play On” for Australian basketballer Lauren Jackson. Pic Supplied.

Dahiner has called on Australians to “Beanie On, Play On”,  and help lead the fight against this ‘Beast’ of a disease.

“MND doesn’t take a break, and the fight to ‘beat the beast’ never stops,” Dahiner says in a FightMND statement. “We will continue our fight to find more effective treatments, and ultimately a cure for Motor Neurone Disease.”

Dr. McIntosh says that while MND is a brutal disease, we still need to find time for moments to laugh and cherish our time together, which is what the Big Freeze is all about.

“It helps us find those moments of fun and humour – we’re playing on and we’re choosing to laugh in the face of this Beast of a disease, as we watch our favourite Australian celebrities plunge into the ice,” she says.

“It’s a special moment of celebration that pushes MND into the spotlight. It’s FightMND’s signal to the world that the fight to find a cure is on.

“Every beanie sold or donation made during the Big Freeze takes us another step closer to cure – so please give generously at and help us rid the world of MND,” Dr McInstosh adds.

FightMND is hoping to raise $2 million by Monday, and supporters who can’t make it to the MCG can stillmake a donation on the FightMND website.

PharmAust’s MND clinical trial

In June last year, ASX listed biotech PharmAust (ASX:PAA) received a pledge of around $900k from FightMND to conduct research into MND.

Following the first $200k grant in April, PharmAust has now made the preparations to proceed to a Phase 1 clinical trial.

The primary objective of the trial is to study the safety of using PharmAust’s lead drug Monepantel (MPL)  in 12 individuals living with ALS/MND.

Patients will undergo dosing according to a conventional dose escalation design, with each level of the dose escalation lasting28 days.

Pre-clinical studies have shown that monepantel can slow disease progression in MND models by clearing harmful materials in a motor neuron that stick together and make them unwell. The upcoming Phase 1 trial aims to advance monepantel as a potential therapeutic for MND

PharmAust has appointed Alithia Life Sciences as Safety Monitor for the trial, and has also commenced screening patients this month.

cGMP (current Good Manufacturing Practice) Monepantel tablets have also been manufactured especially for the MND trial. They tablets were delivered to the trial sites in Melbourne and Sydney in May.

These tablets were designed with a different shape and size, in order to help with swallowing for MND patients, and to reach specific blood drug levels targeted for this disease.

Preparations for the trial commencement are mostly complete,  and recruitment of patients is expected  very soon.

The second installment of $99,230 is now payable from FightMND after the completion of the one-month GMP accelerated stability study of the newly prepared MPL tablets.

The third instalment  of $173,034.80 will be payable upon commencement of the trial itself, while further instalments will be paid by FightMND to PharmAust as they hit additional milestones during the clinical trial.

The trial will be overseen by Dr Susan Mathers of Calvary Health Care, Bethlehem, Melbourne and will include a second trial site headed by Professor Dominic Rowe of the Centre for Motor Neurone Disease Research Faculty of Medicine and Health Research at Macquarie University in Sydney. The funding agreement provides that PharmAust shall own all intellectual property generated from the trial.

This article was developed in collaboration with PharmAust, a Stockhead advertiser at the time of publishing.

This article does not constitute financial product advice. You should consider obtaining independent advice before making any financial decisions.