Thanks to Daniher’s Drive, Simon is a happy camper

Simon Hicks knows firsthand how devastating motor neurone disease (MND) is. His mother, Lorna, passed away from MND in 2002 aged just 51.

In honour of her memory, Simon, his brother Warren and sister Naomi have joined every Daniher’s Drive since its beginning in 2015. In 2022, Simon was the lucky winner of the Daniher’s Drive raffle. Walking away with a brand new Jayco caravan, Simon and his family have wasted no time in hitting the road for some grand adventures!

Here Simon shares his memories of family holidays in Jayco caravan, his time on Daniher’s Drive and why you should register to join the Drive in 2024.

Tell us about the adventures you have had in the Jayco caravan you won through the Daniher’s Drive raffle.

My wife Peta and I have 7-year-old twin girls and we’ve absolutely loved going away in the caravan.  We’ve had the van for one summer and we’ve headed down to Inverloch over New Years. We loved it so much that we extended our stay.

We spent a week in Port Fairy, where my brother and sister joined us.  We have had an adventure in Echuca and camped out on the Murray River in Barooga for the June long weekend. It’s been fun!

What is your connection to MND?

My mother Lorna Hicks passed away from MND in 2002 at just 51 years old.

Mum was an incredibly fit, talented and sporty person. She knew something was wrong in 1998. She couldn’t get the right grip on her tennis racquet resulting in missed shots that she would never miss. She also dropped catches at indoor cricket that she would never drop.

A long process of travelling to Melbourne from Cobram for tests trying to find what was wrong with mum followed.  By process of elimination, we were finally told that mum had MND.

What does the Daniher’s Drive mean to you?

My brother Warren, sister Naomi and I have put teams (Lorna’s Cobram Crew & Lorna’s Girls) in the Daniher’s Drive since it began in 2015.  Our father Brian also contributed every year until he passed away from cancer in 2020.

We had never heard of MND when mum was diagnosed. The internet and email communication were in their infancy. There was also no social media and therefore limited awareness of the disease.

The Daniher’s Drive has been great for our family to get together with close friends to remember mum. It’s also a great opportunity to join the FightMND community help raise awareness and funds to support and improve the quality of lives of those currently battling the Beast.

FightMND events such as the Daniher’s Drive have a great impact and my family are proud to support the cause and the hard work that the FightMND team put in.

What’s your fondest memory from the Drive?

I have so many. 

Number 1: The quality of the people that you meet.  So many top-quality people who are so generous with their time, effort and money – coming together for a common cause.

Number 2: Getting out to the regional communities.  The morning teas and lunches in regional communities are amazing.  You can see the impact Daniher’s Drive has on these communities, most of which have been touched by MND in some way, who want to contribute to the fight. 

I still remember the first year in Penshurst in western Victoria where around 500 people had turned up out of nowhere with cakes that they had been baking for a week. They were there to raise what funds they could for FightMND.  This has continued every year and it’s great to come together with the regions we travel through.

Number 3: Being inspired by Neale Daniher.  Having seen first-hand how tough dealing with MND is, the way that Neale and the Daniher family have assembled an army to fight has been inspirational.  It puts a lot into perspective and being around Neale just makes you a better person.  Not to mention the way that Neale leads Mr Brightside on Saturday night – that is just the icing on the cake!

All of this ties back to the quality of the people.

Why should people get involved with Daniher’s Drive?

To be part of a community of great people all fighting for a really important cause.  You’ll have fun, meet great people and contribute to something that makes a difference.

Donate today

Enter the 2024 Daniher’s Drive raffle for your chance to win!

Thanks to our sponsors at Jayco, you can go in the draw to win your very own 2024 Starcraft Bushpack 19.61-3 Caravan valued at $65,590.

A lucky runner up will receive a gift voucher from our sponsors at the Card Network. Valued at $4,999 this voucher can be redeemed at any retailer of your choice.

What are you waiting for? Purchase your tickets today for just $40 each or 3 for $100 and get in the draw!

The raffle is open to residents of Victoria, New South Wales, Queensland, South Australia and Tasmania. Entries close Monday 7 October at 11:59pm AEDT. The raffle will be drawn Saturday 12 October 2024 at 8:00pm AEDT.

Join the fight. Together we can beat the Beast.

Buy Raffle tickets

Want to join Daniher’s Drive in 2024? Register today!

There is still time to register to join the 2024 Daniher’s Drive. Join 250 other participants for a road trip unlike any other and help us raise awareness and funds in our fight against the Beast that is MND.

The 2024 Drive will depart Melbourne on Thursday 10 October. We’ll take the scenic route through Bendigo, Warrnambool and Lorne before returning to Melbourne on Sunday 13 October.

On Daniher’s Drive, we aim to put the FUN back into FUNdraising. The Drive is a fantastic opportunity to get your family and friends together, form a team and contribute to the fight against MND.

Ready to register, or want to learn more? Check out our Daniher’s Drive page.

FightMND appoints new CEO, Matt Tilley

FightMND is thrilled to announce Matt Tilley has stepped into the role as the organisation’s new Chief Executive Officer (CEO).

Dr Fiona McIntosh, who has served as CEO for the past 4 years, will step down in the coming weeks. She is working with Matt to seamlessly transition him into the role and set him, and FightMND, up for future success.

Matt previously served as Chief Communications Officer at Foodbank Victoria and was the Founder and CEO of the Aussie Dollar Drop which supported homeless Australians.

Prior to this, Matt had a successful two-decade career in commercial media as a radio presenter on major stations like FOX FM and Triple M.

We want to acknowledge Fiona’s dedication and hard work and thank her for her countless contributions to FightMND during her tenure.

Fiona’s achievements

Fiona joined FightMND as CEO in October 2020. During her time with the organisation, Fiona has brought incredible leadership, passion, and vision to the foundation. She has worked with the team to build clear strategies and processes to advance our fight against motor neurone disease (MND).

Building a world class team around her, Fiona has been a strong advocate for funding for research into MND – both in Australia and across the globe.

Under her leadership, FightMND has become a strong, trusted organisation, playing a leading role in supporting funding for critical scientific research.

A Note from Dr Fiona McIntosh

“It has been a privilege to be part of FightMND over the past 4 years – it’s been one of the best and most fulfilling things I have done professionally and personally.

I’m proud of what we have collectively achieved – making the Big Freeze bigger and better than ever, developing FightMND’s new strategy and being clear on how we will accelerate progress in finding a cure through a world-leading Cure strategy. We are also rethinking the way we support people living with MND in Australia by investing in Care initiatives in new ways.

But my proudest achievement is building such a fabulous team. I’m in awe of the way they work together, collaborate and have fun. Perhaps I’m biased but they are truly the best team ever. FightMND is now well-positioned for the future, thanks to all of their collective hard work.

My sincere thanks to the support and friendship from the FightMND Board – particularly Mike Schneider for his friendship and guidance, and to Neale Daniher for teaching me the difference between being a chicken and a pig.

Dr Fiona McIntosh & Mike Schneider

And I am always humbled by the MND community who gives their support so generously towards FightMND. Thanks to all the friends I have made in this compassionate and enthusiastic community (you know who you are) and I look forward to staying in touch.

As we always say, it takes people to beat the Beast that is MND. There’s still more to do but when I reflect on the team we have built and the people I have encountered on this journey, I am hopeful and confident that one day we will live in a world free from MND.”

A Note from Matt Tilley

“Not a day goes by where I might be walking the dog down at the shops or having a cheeky pot at the pub – and not see a few Big Freeze Beanies. They have become an iconic part of our winter life.

I’m incredibly excited to join this team that has become such a landmark organisation in such a short period of time. FightMND is tackling the Beast at the highest levels of medical science and on the world stage – who wouldn’t want to be a part of that? I’m also conscious that as my hairline starts to recede ever so slightly, having a beanie as your work uniform isn’t the worst thing on earth.

I look forward to taking the amazing legacy left by Fiona and growing this brilliant community-driven fight to make a difference across the country and around the globe.”

It takes a team: Big Plans x Big Freeze 10

*Don’t Say. Do. filming starts at Big Plans Melbourne.*

You often hear us say that it takes a team to beat the Beast. From those on the front-line researching treatments and a cure to our wonderful volunteers who help raise vital funds, we all have a role to play.

This year we were fortunate to film our Don’t Say. Do. campaign TVC at Big Plans in North Melbourne. Designed to bring architectural floorplans to life, this unique space provided the perfect backdrop for filming our Big Freeze 10 campaign and reflect on a milestone 10 years.

We wanted to take you behind the scenes of the filming for this year’s campaign.

*FightMND ambassadors gather to film the Big Freeze 10 campaign video in February 2024.*

*Adena* Sevva *and her children getting ready to film.*

*Bec and Neale Daniher filming the Big Freeze 10 campaign video*

*Neale Daniher during the Big Freeze 10 campaign video*

We want to take this opportunity to thank Tass, Dario and the Big Plans Melbourne team for their support during Big Freeze 10. For more information about Big Plans, visit their website.

Still want to support FightMND, but missed the Big Freeze? Don’t worry. Check out our Ways to Support section to learn more about how you can help us beat the Beast that is MND.

Big Freeze 10 raises a record $20.1 million!

MELBOURNE, AUSTRALIA – JUNE 10: Former AFL player, Nic Naitanui goes down the slide during the 2024 FightMND Big Freeze at Melbourne Cricket Ground on June 10, 2024 in Melbourne, Australia. (Photo by Josh Chadwick)

This year we called on you to embody the words of our Co-founder and Patron, Neale Daniher and use your actions over your words. Don’t Say. Do.

And act you did! Thanks to your support, we’ve raised a record-breaking $20.1 million during Big Freeze 10.

This achievement would not be possible without the incredible generosity of our partners, supporters, suppliers and the Australian community.

We recognise that many Australians are doing it tough right now. To everyone who dug deep and purchased a Beanie, a sweater or pair of socks, or who donated generously throughout Big Freeze 10, thank you. Your support has helped make this our biggest result ever!

Our Programs team is working hard to invest these funds into vital MND cure and care initiatives. We look forward to sharing more information about these initiatives with you when we announce our grants later in 2024.

The funds raised during Big Freeze 10 adds to the $97 million FightMND has invested into vital MND cure and care initiatives. Our Impact page has more information about how your support has made a read difference in research outcomes and improving the lives of people impacted by MND.

Ten years of the Big Freeze is truly a milestone. As we reflect on the blows we’ve made to the Beast together, we recognise that the job is not over. This was never a battle that was going to be won in a sprint. We still have work to do, and we need your help to do it.

Stay tuned over the coming months more information about Daniher’s Drive and, of course, Big Freeze 11. We hope that you can continue to join us in the fight against the Beast that is MND.

We go again.

Sliding towards a cure: Big Freeze 10 is here

Today’s the day. Big Freeze 10 has arrived!

Now, while Melbourne and Collingwood gear up for their King’s Birthday clash, 9 celebrities are preparing to take the icy plunge – all in the aim of raising vital funds for MND research.

To be a Slider is deemed an honour. At FightMND, we’re for thankful to all those who have braved the icy conditions to help raise funds and awareness for this important cause. As the event grows, we continue to see our celebrities lift the bar on the costume front – with many asking, ‘What is your costume this year?’. For many, Nick Riewoldt’s Freddie Mercury is the most memorable. The question is, will his cousin Jack take his costume crown? Only time will tell!

Each year there has been standouts. For right or wrong reasons. In the spirt of ‘10’ here are 10 of our highlights. What’s yours?

Sam Newman’s’ Mankini in year one as he showed his wares to the world.

Mick Molloy plunging headfirst and surviving.

Sharelle McMahon shaking off the cold to nail a goal post slide.

Nathan Buckley as firefighter Murray Swinton, who was living with MND.

Luke Beveridge surfing the slide standing up.

The double act of Christian Petracca/Angus Brayshaw as Happy Gilmore and caddy.

Gillon McLachlan’s Meatloaf, served with a touch of satire.

Neale’s loyal demon skipper David Neitz as Braveheart.

Ash Barty’s full body Rafiki from Lion King.

Mick Fanning as the body painted Silver Surfer.

The Big Freeze is, and always has been, a time for us to laugh in the face of the Beast. To push MND into the spotlight. To show the world that the fight for a cure is on – and we’re not backing down.

This year the Big Freeze turns a milestone 10 years. Traditionally milestones are an opportunity to celebrate. But for FightMND, this milestone is about recognising that the job is not over, and that more needs to be done.

This fight against the Beast was never going to be won in a sprint. We still have work to do, and we need your help to do it.

Help us reach $3 million by Monday

You (yes you, wearing your Beanie with pride) answered the call 10 years ago. Your support has helped us build a movement that reaches every corner of Australia. You’ve helped us freeze the nation.

Thanks to you, FightMND has been able to invest in a solid research foundation. This investment is enabling MND research in Australia to be competitive and world-leading in driving a pathway to better treatment and a cure for MND.

But our fight is far from over. We’re now at basecamp and we need your help to get to the summit.

Three million can go a long way to funding vital cure and care initiatives. Three million dollars can be used to help develop and maintain National MND Care Guidelines so that people living with MND can access the same care no matter where they live. Or it can be used to fund 3 Discovery projects to help unlock the causes of MND.

Keep doing. Keep fighting. Donate today and help us reach our $3 million target.

How $3 million makes a difference

At FightMND we often talk about the importance of research in the fight against Motor Neurone Disease (MND). But how does research really make a difference and how does your donation help?

When FightMND was founded in 2014, Australians had very limited or no access to clinical trials. No one knew much about the disease and support for researchers in the MND space was lacking.

Fast forward 10 years and MND research in Australia has come a long way. Our goal is a world without MND. Since 2014, we’ve invested more than $97 million into vital research and care initiatives for those living with MND.

This makes FightMND one of the world’s largest independent funders of MND research.

Thanks to you:

more than 600 Australians have access to clinical trials through FightMND funded projects
we’ve funded 15 clinical trials across 10 sites in Australia and supported 30 drugs in the drug development pipeline
five potential treatments have developed through to clinical trials
two further potential therapies are set to start clinical trials for MND later in 2024.

This support enables MND research in Australia to be competitive and world leading in driving a pathway to a better treatment and a cure for MND. Together we’ve come a long way, but there is still more to do.

Research continues to be our best weapon against the Beast. But this takes time and investment.

This year we’re putting the BIG into Big Freeze. We’re aiming to raise an extra $3 million by Monday 10 June.

But how can $3 million make a difference?

$3 million funds 3 discovery projects to unlock the causes of MND.
$3 million supports the development of 3 new potential treatments for MND.
$3 million funds 2 MND clinical trials to test the safety and efficacy of promising new drugs.
$3 million supports 16 local organisations to provide support, educate and care for Australians affected by MND.
$3 million funds the development and maintenance of National MND Care guidelines so people living with MND can access the same standard of care – no matter where they live in Australia.
$3 million can help us land solid blows against the Beast. But we need your help.

Keep doing. Keep fighting. Help us reach $3 million by Monday

MND is a devastating disease. More than 2,000 Australians currently live with MND. Their average life expectancy from diagnosis is 27 months. Today 2 Australians will die from MND and 2 more will be diagnosed. There is no cure.

This year FightMND is aiming to raise an extra $3 million for vital MND research for Big Freeze 10.

Our fight isn’t over. We need your help to beat the Beast that is MND. Help us reach $3 million by Monday. Donate today.

We go again.

Don’t Say. Do. Help us reach $3 million by Monday

This year FightMND marks 10 years since the first group of brave celebrities took the icy plunge in the name of MND research. To mark the occasion, for Big Freeze 10 we are aiming to raise an extra $3 million by Monday 10 June.

Ten years ago, many Aussies weren’t aware of this cruel disease and progress towards finding a cure globally, let alone in Australia, was slow and frustrating.

So, Neale, with the late Dr Ian Davis, who was diagnosed with MND at just 33 years of age, and Pat Cunningham, whose beautiful wife Angie was diagnosed around the same time as Neale, decided to bring the fight to the doorstep of this insidious Beast.

From here FightMND and the Big Freeze was born.

We know that funding in innovative and urgent research increases our chances of a scientific breakthrough. For 10 years, FightMND has enabled research in Australia to be competitive and world-leading. Driving a pathway to better treatment and a cure for MND.

We are closer than ever before to finding a cure. We now understand some of the genetic mutations and biological events that may cause MND. This takes us even closer to understanding how best to fight it.

While we’ve managed to land some solid blows against the Beast, there is still a lot left to do in this fight. And we need your help.

We don’t believe that MND is incurable, just underfunded – every dollar raised takes us another step closer to finding a cure. We do this with a sense of urgency – people living with MND cannot wait.

Currently, more than 2,000 Australians are living with MND. Their average life expectancy is 27 months. Today, 2 Australians will die from MND and 2 more will be diagnosed. There is no treatment. There is no cure.

Help us reach $3 million by Monday.

MND is relentless, but so are we. We know how personally devastating this insidious disease is, and we’re united in our determination to fight back. Investing in research continues to be our best weapon against the Beast, but it’s expensive and takes time.

We’re putting the BIG in Big Freeze 10. This year we’re aiming to raise an extra $3 million by Monday. But we need your help!

Every donation takes us another step closer to finding a cure. It means that we can continue to land solid blows against the Beast.

Keep doing. Keep fighting. Donate today and help us beat the Beast that is MND.

Stars unite to make Big Freeze 10 one to remember!

Stars unite to make Big Freeze 10 one to remember !

The secret is out! We now know our celebrity slider line-up for Big Freeze 10. Did you miss an announcement. Don’t worry! We have your slider wrap up.

Pat Rafter

Pat Rafter is Australian tennis royalty. Soaring to World No. 1, Pat’s impressive career includes clinching back-to-back US Open titles in 1997 and 1998, winning the Australian Open doubles in 1999 and being a was a double finalist at Wimbledon.

Erin Phillips OAM

Renowned for her leadership on and off the field, Erin Phillips is a legend in not one, but 2 sports! She’s a two-time WNBA champion, FIBA World Champion, and three-time AFLW premiership player. Today you can see her on your screens as part of Channel 7’s AFL broadcasting team.

Nic Naitanui

West Coast Eagles and AFL legend, Nic Naitanui is celebrated for his high-flying marks and dominant ruckwork. During his career, Nic was included in 3 All-Australian selections, won the John Worsfold Medal twice and took out the 2015 AFL Mark of the Year.

James Brayshaw

Former cricketer, James Brayshaw is one of Australia’s key sporting media personalities. He played domestic cricket for Western Australia and South Australia, winning the Sheffield Shield twice—once with each state. Today he is known for his work on Triple M’s Rush Hour as well as commentating cricket and AFL with Channel 7.

Joel Selwood

AFL icon, Joel Selwood is a quadruple premiership player, 6-time All-Australian and 3-time captain of the All-Austrlian team. He captained Geelong between 2012 to 2022, is the club’s games record holder and won the Carji Greeves Medal 3 times. Joel also holds the record for the longest-serving captain in the AFL.

Sally Pearson OAM

Known for her speed and agility, Sally Pearson is one of Australia’s most successful athletes. An Olympic champion, Sally claimed gold in the 100m hurdles at the 2012 London Olympics and silver in the 2008 Beijing Olympics. She is also a two-time World Champion.

Meg Lanning

Meg Lanning is an Australian cricketing icon captaining the Australian Women’s cricket team to multiple world titles, including 2 Cricket World Cups and 5 T20 World Championships. Meg is celebrated for her record-breaking batting, including the most Women’s ODI centuries.

Jack Riewoldt

Rounding out our AFL icons taking the plunge is Jack Riewoldt. This Richmond legend has had an illustrious career with 3 premiership titles, 3 Coleman Medals, and 3 All-Australian selections. Jack is also a 12-time leading goalkicker for Richmond and a 2-time Jack Dyer Medallist.

Mac Horton

An Australian swimming champion, Mack Horton, is celebrated for his Olympic gold in the 400m freestyle at Rio 2016. He’s also a World Championships gold medallist, and a four-time Commonwealth Games gold medallist. Horton’s career boasts seven World Championship medals and a legacy of junior world records

There is less than a week to go until Big Freeze 10!

The countdown is on!

The Big Freeze is a special moment of celebration that pushes MND into the spotlight. It is our signal to the world that the fight for a cure is on! The Big Freeze is also a chance for us to find moments of fun and humour. Together, we choose to laugh in the face of the Beast as we watch our favourite Australian celebrities and sporting personalities slide into the icy pool.

So join us on June 10 at 2pm and see your favourites take the icy plunge all in the name of fighting the Beast that is MND. Then stick around for the King’s Birthday clash as Collingwood take on Melbourne.

If you can’t make it to the game, don’t worry! You can catch the whole thing live on Channel 7.

Don’t Say. Do. Big Freeze 10 is here.

The Big Freeze is back for its 10th year, with FightMND officially launching Big Freeze 10 in an immersive experience unlike any other, all in the aim to raise vital funds to continue the search for a cure for Motor Neurone Disease (MND).

This year’s launch included a stunning totally immersive experience at THE LUME Melbourne, our official venue partner. The experience brought to life FightMND’s 10 year journey and 9 previous Big Freeze events that have catapulted FightMND into one of the world’s leading funders of MND research.

This year’s message is a simple adaptation of one of Neale’s most famous mantras – “It’s not what you say, it’s what you do!” and Big Freeze 10 is an opportunity for everyone to DO their bit, and let their actions speak louder than words.

FightMND was founded a decade ago by Neale Daniher AO, Dr Ian Davis and Pat Cunningham, with the original Big Freeze taking place on Queen’s Birthday 2015. Sadly, Dr Davis and Pat’s wife Angie Cunningham have since passed away because of the disease. But, the legacy they helped create means the fight goes on and FightMND continues to fund critical research into cure and care for those living with MND.

*_{Big Freeze 10 beanie launch. The Lume South Wharf. Wednesday, May 8, 2024.}*

FightMND has invested more than $97 million into research and care initiatives thanks to the amazing generosity of the Australian public, partners and state and federal governments. But more is needed and so ‘we go again’ with Big Freeze 10.

Every Beanie sold and donation made brings us one step towards a cure. So, team up for Big Freeze 10 and do your bit. Buy your Beanie today at Coles, Bunnings, selected Coles Express stores and online.

*_{Eddie McGuire Big Freeze 10 beanie launch. Lume South Wharf. Wednesday, May 8, 2024.}*

Keep doing, keep fighting. When you wear your Beanie with pride, you’re stepping up and fighting for Neale and everyone who has or has had MND. Share your action across social media with the hashtags #DontSayDo #BigFreeze10 and tag us @fightmnd

*_{Big Freeze 10 beanie launch. Lume South Wharf. Wednesday, May 8, 2024.}*

A huge $1.2 million investment kicks off FightMND’s inaugural ‘Care Research Grants’

In another innovative move to ‘beat the Beast’, FightMND will invest $1.2 million into five Motor Neurone Disease (MND) research projects focused on determining and improving best-practice care for people living with MND.

It’s the next step in the fight for the organisation, and the Care Research Grants initiative will help inform guidelines around providing the most suitable care for people living with MND, as well as MND Care innovations aiming to improve quality of life and extend survival.

Co-founded by AFL legend Neale Daniher AO in 2014, FightMND is now one of the world’s largest independent funders of MND research.

FightMND’s vision is a world without MND, but the road to a cure also requires a continued effort to improve MND Care in Australia and addressing key challenges faced by people living with MND, and their loved ones, during and after a diagnosis.

FightMND Director of Research and Programs, Dr Bec Sheean says this commitment to pioneering investment in MND Care research will build the capacity and capability of the Australian Care research sector and serve as a beacon of hope for Australians living with MND.

“Everyone’s journey with MND is different and we want to ensure that every Australian living with MND gets the best support available when they need it most,” says Dr Sheean.

“With this investment, we’re matching our long-term commitment to finding a cure with a targeted focus on improving care through our support of these new projects from incredible teams of researchers.

“We know that research is the best way to defeat the Beast, but it can also help to tame it. Improving the standards of care will mean that everyone who is diagnosed with MND now, and into the future, can experience the best possible quality of life while fighting this insidious disease,” says Dr Sheean.

The investment from this initiative brings FightMND’s total investment in MND Care to over $11.6 million since 2017.

The Care Research Grants initiative was open to researchers nationwide, with five projects identified as the top-ranked projects for support:

Professor Samar Aoun: Perron Institute Research Chair in Palliative Care, University of Western Australia, WA
Professor David Berlowitz: Clinician Researcher, Department of Physiotherapy at The University of Melbourne and Respiratory Physiotherapist, the Victorian Respiratory Support Service at Austin Health, VIC
Dr Marnie Graco: Implementation Scientist, the Institute for Breathing and Sleep at Austin Health, VIC
Dr Anne Hogden: Senior Lecturer, School of Population Health at UNSW, NSW
Dr Nicole Sheers: Clinician Researcher, the Department of Physiotherapy at The University of Melbourne, and the Institute for Breathing and Sleep at Austin Health, VIC

Professor Samar Aoun, who was awarded the 2023 WA Australian of the Year for her work in palliative care, aims to improve the quality of palliative and end-of-life care service delivery to MND patients by understanding and addressing gaps in current practice across various settings.

“This national collaborative approach will bring together for the first time peak MND and palliative care organisations to work together… It will establish a collective of stakeholders that includes people living with MND and their families, and has the capacity to sustain and nurture future research, workforce education, training for informal carers and service development,” says Prof. Aoun.

Professor David Berlowitz’s project aims to develop and apply artificial intelligence (AI) to the setup and optimisation of Non-Invasive Ventilation (NIV), a mechanical breathing support used by people living with MND, as people’s needs change.

“We believe that this AI development work is unique internationally. We currently do not have NIV devices that can really keep up with the changing respiratory needs of people living with MND. This FightMND grant can help us change that. Good respiratory support does not make MND go away, but when done well, it absolutely helps people, and the families live better with MND,” says Prof. Berlowitz.

For the last two years, Dr Marnie Graco has been leading crucial research on how to improve the uptake of Non-Invasive Ventilation (NIV) to improve quality of life and survival for people living with MND.

“My research has shown that access to NIV is inequitable across Australia, and I have identified many problems that could be addressed to improve NIV access. This new project, funded by FightMND, will allow us to work with the MND community to develop novel, targeted solutions to these problems,” says Dr Graco.

Dr Anne Hogden’s project will co-design up-to-date, high quality Decision Support Tools (DSTs) to empower people living with MND to be able to make informed decisions for their care and quality of life.

“The DSTs were developed with members of the MND community, and we will now improve the range to meet the current needs of people living with MND…Rather than just reading fact sheets, the DSTs assist people to work through the options at their own pace, weigh up the pros and cons, and arrive at a decision,” says Dr Hogden.

Dr Nicole Sheers’ research looks at whether specially developed exercises can help people living with MND maintain their breathing muscle strength to breathe deeper and cough better.

“Breathing muscle weakness, cough and swallow problems have a devastating impact on people affected by MND… This pilot study will tell us whether people living with MND can manage this novel, proactive exercise program, as well as provide some information about the benefits on breathing, cough and swallow function,” says Dr Sheers.