Vance Joy to warm up crowd at Big Freeze 8

Global music superstar and hometown hero Vance Joy is set to kick off celebrations at the AFL’s Big Freeze match between the Collingwood Football Club and Melbourne Football Club on June 13.

The Australian, ARIA-award-winning singer-songwriter will take to the MCG performing hits such as Missing Piece, and his new single Clarity from his forthcoming album ‘In Our Own Sweet Time’ (out June 10).

His performance will precede the Big Freeze celebrity slide and Round 13 clash at the MCG on the Queen’s Birthday public holiday (VIC).

The announcement of Vance Joy as the musical act for the Big Freeze comes as tickets for the AFL game go on sale.

Now in its eighth year, the annual Big Freeze event sees the AFL community come together to help raise awareness and funds to find effective treatments and a cure for Motor Neurone Disease (MND).

Vance Joy said he was excited to be heading to his hometown for the iconic event in the AFL calendar.

“It’s an honour to be part of the Big Freeze 8, an event which has fundraised an incredible amount of money to help find a cure for MND,” Vance Joy said.

“I can’t wait to perform in front of a packed-out crowd at the MCG, all wearing their Big Freeze blue beanies.”

FightMND Campaigns Director Bec Daniher also flagged her excitement at being able to celebrate the Big Freeze, with her father and FightMND Patron and co-founder Neale Daniher, in front of tens of thousands of passionate AFL fans.

“The Big Freeze is back with a bang and what better way to kick off the celebrations than with a performance by Vance Joy,” Bec Daniher said.

“Throw in the return of the March to the G’ along Daniher’s Way, watching our brave celebrity sliders plunge into the ice, and the atmosphere of 80,000 cheering footy fans, the Big Freeze 8 is shaping up to be an unforgettable day.”

Tickets to the Big Freeze match can be purchased online via Ticketek.

Big Freeze beanies are now on sale in Coles, Coles Express and Bunnings stores nationwide and online here.

 

The Big Freeze is back – It’s time to Beanie On, Play On

Big Freeze 8 beanies are now on sale at Coles, Coles Express and Bunnings stores nationwide and online at fightmnd.org.au.

Neale Daniher is calling on people in every corner of Australia to Beanie On, Play On at the launch of FightMND’s annual fundraiser, the Big Freeze 8, today.

FightMND Patron and co-founder Neale Daniher AO, who himself is fighting Motor Neurone Disease (MND) was joined by his family at the MCG to celebrate the reveal of this year’s popular Big Freeze beanie.

Now in its eighth year, the annual campaign sets out to raise awareness as well as vital funds to find effective treatments and a cure for MND.

As MND takes away Neale’s ability to be the voice of the campaign, this year serves as an emotive call to arms for all Australians to help lead the fight against this Beast of a disease.

“As the beast takes away my ability to be the voice of this fight, this year, more than ever, I’m calling on all Australians to come together, play on and help lead the fight against MND – with actions, not words,” Neale Daniher said.

“MND is relentless but so are we. By proudly wearing a Big Freeze Beanie, you’re joining an unstoppable army, united in their determination to fight back and marching as one towards a cure.

Together I know we can defeat this Beast. It’s time to Beanie On, Play On.”

All funds raised through the sale of Big Freeze 8 beanies as well as 10 cents from every Coles Brand Australian Pork product and 20 cents from every Coles Free Range Pork product sold until 21 June will be invested in cutting-edge research projects focused on driving discoveries towards a cure as well as care for those living with MND.

The six-week campaign will culminate with a huge celebration on the Queen’s Birthday public holiday (13 June) at the annual Big Freeze match between the Collingwood Football Club and Melbourne Football Club at the MCG.

The celebration will include the much-loved celebrity slide, see the return of the March to the G’ for the first time since 2019 and a yet-to-be-announced global musical act.

FightMND CEO Dr. Fiona McIntosh recognised the important role of the Australian public in their ongoing enthusiasm for the Big Freeze and the famous blue beanies.

“We know it will take people to defeat this Beast and it’s only thanks to the generosity of our supporters and committed partners in Coles and Bunnings, that we are able to make a real impact for people living with MND,” Dr McIntosh said.

“Every beanie sold takes us closer to a cure and helps give hope to people with MND – hope that one day, there will be effective treatments or a cure for this devastating disease.”

When you put on a Big Freeze beanie, you’re stepping up and playing on for Neale and everyone that has been diagnosed with this horrible disease. You’re showing people living with MND that you are with them and that you care.”

FightMND Campaigns Director, Bec Daniher also flagged her excitement at being able to celebrate the Big Freeze in front of tens of thousands of passionate AFL fans for the first time in three years.

“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,” Ms Daniher said.

“We might be opposing teams on the field, but when it comes to the fight against the Beast, the Big Freeze shows that we’re all on the same team, united in our goal – a world without MND.”

AFL Chief Executive Officer Gillon McLachlan said he is looking forward to seeing football fans at a packed MCG on the Queen’s Birthday public holiday.

“It’s always so inspiring to look out across the MCG to a sea of the Big Freeze beanies being worn by football fans during the much-anticipated Melbourne and Collingwood clash.

The important work that FightMND does with the help of the broader football community and fans continues to grow year on year and as an organisation we couldn’t be prouder to put our beanies on and play on,” Mr McLachlan said.

The famous, blue, Big Freeze beanies cost $25 and are available for purchase nationally at your local Coles, Coles Express, Bunnings and via fightmnd.org.au.

Kids’ beanies are also available exclusively online via the FightMND website.

FightMND’s partners are integral to the success of the Big Freeze campaign and help ensure that it’s easy to join the fight against the Beast.

Coles Chief Operations Officer Matt Swindells said Coles was delighted to be selling beanies in its Coles Supermarkets and Coles Express stores again this year.

“Coles has been a proud partner of FightMND for the past five years and we’re delighted to once again support this important cause with the help of our customers, pork farmers and team members,” he said.

“With an average of two Australians diagnosed with MND every day, it’s a cause that has been very close to many of our customers and team members. That’s why we’re incredibly proud to be a part of the FightMND Army and to help make a genuine difference to the people and families impacted by this horrible disease.”

Bunnings Director of Operations, Ryan Baker said that Bunnings was excited to be supporting the Big Freeze campaign for the fourth year running.

“Our team and customers continue to get behind the campaign year after year, proudly donning their beanies to support the fight against the Beast.

We’re humbled to be a part of the FightMND Army and look forward to coming together for Big Freeze 8 to ‘Beanie On, Play On’ and help raise vital funds and awareness for MND,” Mr Baker said.

Purchase your Big Freeze beanie or make a donation and help find a cure for MND.

Funded research projects

Thanks to the ongoing support of the Australian public and the FightMND Army,  FightMND has invested more than $55.9 million into MND research since 2014.

Together we have made real progress towards effective treatments and a cure since the Army answered the call seven years ago.

People living with MND now have more opportunity to participate in research or clinical trials throughout Australia. It is proof of the accelerating progress we0 are making to end MND.

From clinical trials to drug development projects, it is research like this that will help us find more effective treatments and ultimately a cure.

Below you will find a list of the clinical trials, drug development projects and impact grants we’ve invested in from 2016 – 2021

Clinical trials

Clinical trials test and evaluate promising new treatments to find better ways to prevent, detect or treat MND.

Drug Development Projects

Drug Development projects are focused on advancing promising new drugs or therapies through the final stages of testing in preparation for their assessment in clinical trials with MND patients.

IMPACT grants

To accelerate the development of effective therapies for MND, FightMND IMProving and ACcelerating Translation (IMPACT) grants support projects focused on overcoming one or more key barriers preventing the advancement of potential treatments through to clinical trial.

Angie Cunningham PhD Scholarship and Grant-in-Aid

Honouring the life of Angie Cunningham, FightMND’s Angie Cunningham PhD Scholarship aims to support future leaders in MND research.

FightMND supports biomedical research in the field of Motor Neurone Disease (MND), encompassing all relevant research disciplines. The objectives of the Angie Cunningham Scholarship Scholarship and Project Grant-in-Aid Award are to:

  • Support research aimed at understanding the causes of sporadic MND,
    elucidating disease mechanisms and facilitating the translation of therapeutic strategies from the laboratory to the clinic;
  • Encourage new interest within the field of MND research from exceptional new postgraduates;
  • Help develop PhD graduates who demonstrate academic leadership,
    independence, creativity and innovation in their work and foster a passion for future MND research;
  • Honour the memory and legacy of Angie Cunningham

Angie Cunningham Scholarship recipients:

Drug Screening Platform

In 2017, with support from the Andrews Labor Government, FightMND partnered with the Balcon Group Pty Ltd to establish the FightMND Drug Screening Program. The four-year, $5M program aims to establish a high-throughput drug screening platform to screen approved and experimental treatments on motor neurons grown from skin cells from Australians living with MND.

The FightMND Drug Screening Program has drawn together an expert team of stem cell scientists and MND clinicians and made significant progress over the last four years. The major research outcomes for the study include:

  • the generation of the world’s second-largest MND iPSC bank available for drug screening and a vital tool for MND researchers globally
  • the development of a robust motor neuron generation protocol that will be published and shared within the research community
  • an MND specific drug screening platform and pipeline for screening approved and novel promising therapeutics
  • the foundation for comprehensive single-centre multidimensional characterisation.

Research update – April 2022

We’re four months into 2022, so here’s a quick roundup of what’s been happening in the world of MND research.

Record number of FightMND research grant applications 

Applications for the 2022 FightMND research grant round closed on Monday 4 April.

FightMND received a record number of applications from MND researchers across Australia and around the world.

Over the next few weeks, MND experts from all over the world will be reviewing the applications, helping ensure only the most promising research gets funded.

We thank the researchers who have applied for their time and effort in preparing their applications and wish them good luck.

The outcomes of the 2022 grant round will be shared later in the year.

 

 

Professor Matthew Kiernan receives Sheila Essey Award

Professor Matthew Kiernan from the University of Sydney has received significant funding from FightMND, leading several clinical trials for Australians with MND.

In recognition of his amazing research achievements and contribution in the MND research sector, he has been awarded the highly prestigious Sheila Essey award by the American Academy of Neurology.

As the first Australian neurologist to receive this honour, this award reflects the tireless work Prof Kiernan has committed to helping his patients with MND/ALS.  

Read more

 

Lighthouse II (Phase 3) Clinical Trial begins recruitment

In an exciting step forward, the Lighthouse II (Phase 3) trial began recruiting in their first round of drug trials this year.

With the first patient being enrolled in the trial for MND earlier this year, participants will be part of an international effort, testing the efficacy of a drug called triumeq.

Aiming to enrol 390 participants from across Australia, Europe, and the UK, FightMND are proud to support the Australian component for up to 90 participants. FightMND also supported the successful Lighthouse I (Phase 2) trial in 2016, which has paved the way for this Lighthouse II study.  

Read more 

Best and brightest MND minds come together for MND Symposium in Brisbane

For the first time in two years, some of our best and brightest minds in the Australian MND research sector will be coming together to share updates, findings, and advancements in MND research.

Co-funded with MND Research Australia, the first-ever Australian and New Zealand MND Research Symposium is set to be held in Brisbane from 28 – 30 April.

With registrations now open, the three-day event will provide a unique opportunity for MND researchers and those with a lived experience of MND to collaborate, connect and learn.

Featuring over 55 presentations, 50 posters, a symposium dinner, platform and poster prizes and Q&As with Australia’s leading MND researchers, it is an event not to be missed! 

Read more 

Key risk-factor gene for MND identified 

An important link between a key risk-factor gene (UNC13A) for MND/ALS and a significant feature of the disease has been identified.

Published in the journal Nature, the study indicates that the loss of a protein called TDP-43 in the part of a motor neuron that stores its genetic information, can cause changes in the UNC13A gene, and increase the risk of MND/ALS.

These new findings are especially exciting as they have improved the understanding of MND and provide further support for the development of TDP-43-targeted therapies.  

Read more

PedalCure4MND raises nearly half-a-million dollars for the fight against MND

PedalCure4MND has now cemented itself as one of FightMND’s largest community fundraisers ever, raising nearly $500,000 for the fight against MND this year.

See PedalCure4MND’s live fundraising tally here.

On Saturday 12 March, 94 riders and 20 volunteer support crew rolled into Ariah Park, wrapping up their heroic seven-day, 880 kilometre Riverina cycling challenge.

Starting in Temora on 5 March with an extra special send off from Neale’s mum Edna, the route took riders to the towns of Lockhart, Berrigan, Albury, Wagga Wagga, Narrandera, Griffith before celebrations got underway at the finish line in Ariah Park.

Averaging 100 – 138km per day, the ride saw participants cycle from town to town, before camping overnight at local football grounds and enjoying the local hospitality of welcoming regional communities.

More than a bike ride, the event sets out to raise awareness and funds for MND research and care.

At the night events during the ride, participants were joined by members of the local community to celebrate and hear from FightMND’s Founder Pat Cunningham, Para-Olympic Gold medallist Scott Reardon, former Australian Opals Basketballer Lauren Jackson, Media legend Jason Richardson and MND Researcher Prof. Aaron Russell.

Organiser and Lockhart local John Fox said, “while the ride is a serious physical challenge, it’s worth every effort to help beat MND.

“While it’s a big distance to cover on a bike, it’s also a very satisfying experience riding with great people all who are trying to help raise funds for MND research,” Mr Fox said.

“We had a great support team that lead us along the route and helped keep us fuelled with food and drinks between towns.”

Now in its third year, the event which is held every two years has now raised more than $820,000 in total for FightMND.

FightMND CEO Dr. Fiona McIntosh recognised the outstanding efforts of everyone who helped make this event an outstanding success.

“On behalf of everyone at FightMND, I want to extend a heartfelt thank you to Team PedalCure4MND for their ongoing and inspiring commitment, both on and off the bike, to the fight against MND,” Dr McIntosh said.

“This year, I’m especially thrilled to congratulate PedalCure4MND on reaching a momentous milestone, raising nearly half-a-million dollars this year alone, taking their total funds raised for MND research and care to more than $820,000.”

“The progress being made in research laboratories around the world would not be possible without the support of everyone involved in PedalCure4MND.”

FightMND would like  to also personally acknowledge ride organisers Paul Bruest, John Fox and Paul Ansell for their mammoth efforts over the past few years, as well as the local Riverina communities and sponsors and partners including Supra Capital, A2 Milk, Diageo (Bundy Rum), Sureway Employment & Training, Supra Capital, Removed A2 milk again), Matthews IGA Group, Delta Agribusiness, The Famous Australian Sign Company (Albury) and Triple M Riverina.

Rumour has it that ride organisers now have Tassie in their sights for the next ride in 2024… stay tuned.

Ty set to raise funds for FightMND with a new Beanie Boo in 2022

Ty Inc is the largest manufacturer of plush in the world, and its Chairman, CEO and founder Ty Warner, is honoured to be joining the fight.

“Hopefully this special Beanie Boo, named after my great friend and Australian distributor Tony, will bring awareness around the world to this horrible disease, and bring us closer to beating the beast that is MND/ALS”.

A philanthropist, Mr Warner has donated more than $300 million to a variety of charities worldwide including the American Red Cross, UNICEF, United Way Worldwide, Ronald McDonald House, WIRES, and many more.

FightMND CEO Fiona McIntosh thanked Ty for joining the global fight against MND and helping raise awareness of the disease which has no effective treatment or cure.

“Anyone with children knows how popular Beanie Boos are, which is why we are very excited to partner with Ty and have our own special FightMND Tony the Penguin join the Beanie Boo family,” Dr McIntosh said.

“The money raised through this new partnership will go towards cutting-edge research to teach us even more about the disease and how to fight it.”

“Every dollar raised for the fight against MND takes us another step closer to finding effective treatments and a cure,” Dr McIntosh added.

Tony the Penguin is the newest fundraising item for FightMND, which will be offered in addition to the famous blue Big Freeze Beanies, which go on sale in Australia at Coles, Bunnings and online in May 2022.