Challenging 27 her way: Leanne’s story 

Leanne Sklavenitis is someone who loves being on the move. Starting as a fitness instructor back in the 80s, today she is a consultant, coach and professional speaker. Her passion for all things health and fitness, and for helping others achieve their goals, has taken her around the world.  

Leanne was diagnosed with motor neurone disease (MND) in September 2017. While she could no longer participate in fitness classes, this hasn’t stopped her from inspiring and helping others. 

This year Leanne, along with her daughter Maree, is challenging 27 her way, by taking 27 steps every day this September. 

As we reach the halfway point of Challenge 27, the FightMND team sat down with Leanne to learn more about her MND journey, why she is taking on Challenge 27 and her tips for staying motivated. 

When did you notice that something wasn’t quite right? 

Initially, a trip up the stairs at a restaurant left me with what I thought was a soft-tissue knee injury. It took about a month for my knee to recover. I was told at the time that I had possibly twinged a nerve. But, I know my body and something didn’t feel quite right.  

As I was searching for answers, I was becoming more unstable as my legs began to weaken. Over time the signs, like falling off my bicycle for no reason, started to hint at something more. 

In September 2017, 18 months after my knee injury, I received my diagnosis. I had motor neurone disease. 

What role has fitness played in your day-to-day life before and after your diagnosis? 

Exercise and nutrition are so important to overall health and wellbeing. Our bodies are designed to move. From the start, I’ve been determined to keep firing up my muscles to maintain the neural pathways while they were still functioning. It really was a case of ‘Move it. Or lose it.’. 

Even with my diagnosis fitness is my passion, and I’m determined not to give up what I love. While I can’t move my body the way I used to, I know how important exercise is for my mindset and mood – and I’ll look to exercise in whatever way I can! Plus, I still get a natural endorphin high when I train.  

What is something people often think about MND that you want to challenge? 

People might see MND and assume it’s all doom and gloom, but that’s not how I see it. MND is incredibly debilitating, yes, but my mind is still sharp. There is still so much hope and there’s so much that people living with MND can still contribute to our world. Although I might not look the same on the outside, I choose to live a fulfilling life. It’s not about giving up; it’s about deciding to keep going, no matter what. 

Why are you choosing to get involved with the Challenge 27 campaign this year? 

Even before my diagnosis I have strived to be the best version of myself and to mentor and motivate those around me. I’m still able to inspire and help others by sharing my story and the lessons I’ve learnt on my journey of living an awesome life with MND. 

Challenge 27 is one way I can do this. No matter how bad your day is, or whatever adversity you’re facing, it is important to get out there and move. I do it. You can too. It is such a great campaign for a great cause. FightMND gives people hope and if I can be an ambassador and provide that hope where I can, I’ll do it.  

So, what are some of your favourite exercises? 

I’ve always loved to sweat. Anything hardcore like push-ups, weights, or the dreaded burpee, and I was all in. It’s all about the burn! 

After 8 years with MND, I’m fortunate to still bear weight. For me taking 27 steps a day will be a huge challenge. But I love a good challenge and will not shy away from taking it on! 

Now, we’re getting to the mid-way point of Challenge 27. How about your number one tip for someone whose motivation is starting to get a little low? 

Reach out to an accountability buddy. It’s amazing how a quick message can give you that extra push to get moving. I’m also a big fan of rewards. So treat yourself once you’ve done the work! It’s all about making it fun and giving yourself something to look forward to. 

For those looking to unfreeze their fitness routine and get back into exercise, what’s your number one tip? 

You need to schedule it in! Put it on your calendar every day, just like you would any other appointment. And if you can, find a friend to join you – it makes it more fun and keeps you both accountable! 

Challenge 27 your way and show your support 

Challenge 27 is well underway. Until 30 September get active, raise funds and help FightMND work towards our vision of a world fee of MND. 

There is no rule on how to take on 27 your way. Just include 27 into your challenge goal. This can be cycling 27 kilometres, going to 27 fitness classes, or trying 27 different exercises during the month. The possibilities are endless! 

If you can’t participate in Challenge 27, don’t worry, you can still show your support by donating to one of our fantastic participants. Learn more about Challenge 27 and donate today via our website.  

Honouring her Dad’s legacy: Wendy and Norm’s story

A fit and healthy father of four, Wendy’s Dad, Norm, was always on the go. Working as a fitter and turner, he ran every day, cycled, played basketball and squash. Most importantly, Norm was a generous family man, helping raise Wendy and her brothers. Wendy’s favourite memory of her Dad was when she sat on his knee and Norm would wrap his arms protectively around her. 

Much of the family’s time revolved around soccer. A true family affair, the kids played at the local club and Mum helped run the canteen. Norm also played a big role at the club as team manager. A role he held since the establishment of the club in the early 70s. 

When Norm was diagnosed with motor neurone disease, it was the soccer community that banded together to provide their support.  

A MND diagnosis  

Norm was diagnosed with MND in 1986. He noticed that something was different after falling when running to catching the train into the city. Back then there wasn’t much awareness or understanding about MND. Wendy remembers her family desperately looking for information about MND. Frantic to learn about the Beast that had descended upon their lives. 

MND quickly wreaked havoc on Norm’s strong body. He was admitted to palliative care shortly after his diagnosis. Wendy remembers travelling 40 kilometres to see her Dad at every opportunity she had. 

Over the last 12 months of his life, Norm lost his ability to speak and needed Wendy’s mum to help with eating. He was a prisoner in his own body and had to rely on people for the smallest task, which caused him great frustration.  

Although it is painful for Wendy to remember what her Dad went through, she recalls the kindness of the nursing staff with great fondness. With their help Wendy’s family were able to bring the family dog to visit Norm as well as organising a surprise 30th wedding anniversary for her parents. 

Norm died 18 months following his diagnosis. He was only 55 years old.  

Wendy’s daughter shares Norm’s birthday. A bittersweet reminder of everything he missed out on because of MND. Together, Wendy and her daughter visit where Norm’s ashes are scattered. They purchase Big Freeze Beanies every year and donate what they would have spent on his birthday and Christmas gifts to FightMND.  

Honouring Norm’s legacy with a gift in her Will 

In remembrance of Norm, Wendy has decided to leave a gift in her Will to FightMND. Her decision is a deeply personal way for her to make a lasting impact in the fight against MND. 

Wendy says “You never know when this could affect you or somebody you love dearly in the future. Any little bit would help to find a cure.” 

Norm’s story is a powerful reminder of why a gift in Will to FightMND is so important. It has been many years since Norm passed away. But, the lasting impact MND has on families like Wendy’s highlights the urgent need for research and support. 

Including a gift in your Will 

By including a gift in your Will to FightMND, you’re investing in a future where families like Wendy’s don’t have to endure the heartbreak of watching a loved one become a prisoner in their own body. 

A gift in your Will to FightMND is the gift of better treatments and therapies for people living with MND. It is an investment into a future without MND.  

Until 18 September, FightMND is offering you the opportunity to secure your family’s future with an online Will through Safewill, normally $160. 

Safewill’s simple platform provides step-by-step instructions, with each Will reviewed by a practicing Australian solicitor for peace of mind. After 12 months, a subscription fee will apply. Safewill’s terms and conditions are available on their website. 

Our gift in Wills page has more information about how you can leave a gift in your Will. We would love to hear from you so if you have any questions please reach out to Eloise Shepherd our Gifts in Wills Coordinator at [email protected] or 03 7052 7004.  

FightMND brings the world’s best MND minds together for Roundtable event

At FightMND we know that our best weapon in the battle against motor neurone disease (MND) is research. In any fight, there are moments of success but there are also challenges. Research is no different. Today, MND researchers face challenges in progressing their work to find effective treatments, and a cure for MND. One way we can address these barriers is through collaboration.  

From 28 to 30 August, FightMND is hosting its inaugural Global MND Research Roundtable in Melbourne, Australia. The Roundtable brings together world-leading neurologists, geneticists and cellular biologists in the MND field along with strategic and collaborative leaders, people with lived experience of MND, industry and funders from outside MND. With a strong focus on international collaboration and capturing diverse perspectives, the Roundtable has invited delegates from around the world. This includes Canada, the UK, the US, New Zealand, Switzerland, Malaysia, Belgium, France, the Netherlands and Australia. 

The purpose of the Roundtable is to address some of the biggest challenges preventing researchers from transitioning their research into effective treatments and, ultimately, a cure for MND. These themes were developed based on feedback from the global MND research community. They include: 

• Disease heterogeneity. Understanding the variability and genetics in a person’s disease. 
• Disease fundamentals and drug targets. Understanding the fundamentals of the disease to develop drugs to target MND.  
• Patient stratification and classification. Ways to help guide patients to the right clinical trials. 
• Biomarkers. To develop a diagnostic test, as there isn’t one, and a way to measure how a disease is progressing. 
• Global collaboration. Ways for researchers around the world to collaborate on projects focusing on MND.  

During the Roundtable, delegates will work together to discuss and develop a series of outcomes. These outcomes aim to address the barriers faced by MND researchers and accelerate progress towards effective treatments and a cure for MND. 

We would like to thank our Roundtable sponsors for their support. Major sponsor and dinner sponsor Teva Pharmaceuticals, welcome event sponsor Perron Institute, lunch and morning tea sponsor Murdoch University and lunch sponsor Alithia Life Sciences.

The Roundtable would not have been possible without all of the support from the Australian community during the Big Freeze and beyond. Whether it is through buying a Beanie, donating and everything in between. The FightMND team would like to thank you for your support. It is thanks to you that we can bring these leaders together for such an important event. 

Stay tuned over the coming months as we share updates on the outcomes of the Roundtable with all of you.  

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. 

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.  

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 

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.  

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.  

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.