Using zebrafish to understand more about MND

Using zebrafish to understand more about MND

Assoc. Prof Marco Morsch. FightMND grant announcement Macquarie University Sydney on Monday, November 11, 2024.

There is a wide range of projects that FightMND supports through grant funding. These include projects: 

  • building our understanding of MND 
  • addressing roadblocks to treatment 
  • helping to progress the development of treatments. 

One project type invested in by FightMND is Discovery projects. These projects aim to understand why motor neurone disease (MND) occurs and what drives its progression. They advance our understanding of MND. Increasing the chances of developing effective treatments or a cure. 

Associate Professor Marco Morsch is Co-Director of Research at the Macquarie Medical School at Macquarie University. He founded one of Australia’s first zebrafish research programs into MND This program investigates how neurodegenerative diseases, like MND, develop. Through his research, Associate Professor Morsch is helping to uncover critical insights into neurological disorders.  

In 2024, Associate Professor Morsch received a FightMND Discovery Grant to support his research on a protein called TDP-43.  

In this interview, he shares what inspired him to focus on MND research and talks about his journey so far. 

What made you decide to pursue a career in MND research? 

My motivation to pursue research in MND stems from the need for more knowledge and treatments for this devastating condition. The more I learn about the complexity of MND and the challenges in finding effective therapies, the more driven I became to contribute to this field.  

I am passionate about uncovering mechanisms that lead to neurodegeneration, particularly in MND, and finding ways to halt or reverse its progression. Knowing that each discovery, even at the basic science level, could bring us one step closer to relief for patients and families inspires me and my team to get into the lab every day. 

Can you tell us a bit about your research to date? 

Before receiving the 2024 funding, my research focused on understanding how protein clumping happens and how nerve cells interact with supporting cells, called glial cells. I studied how proteins like tau and TDP-43 become toxic when they clump inside neurons and how this affects nearby support cells.  

Using models like zebrafish, I examined what happens when these proteins are overproduced in nerve or glial cells. This research has helped me understand how protein clumping leads to neurodegeneration.  

What is your current project about? 

This project looks at how the TDP-43 protein is kept stable and functional in cells. Zebrafish will be used to provide a see-through view of this protein in action.  

TDP-43 is important for normal cell activity, but when it misfolds and forms clumps, it contributes to diseases like ALS / MND. By understanding how TDP-43 stays in its proper shape, we hope to find ways to stop it from clumping, which could lead to new treatments for ALS / MND and similar diseases. 

What do you hope to achieve with your project? 

Our goal is to find specific molecules that can help keep the TDP-43 protein in its healthy, functional state. By doing so, we hope to prevent or even reverse the toxic clumping of TDP-43. This could lead to new ways to protect nerve cells and slow or stop disease progression. 

How does your project contribute to the MND research community? 

Our project will provide new understanding of how TDP-43 clumps together, revealing potential targets for treatment that could help advance ALS / MND research worldwide. 

How does a FightMND grant help your project? 

This Discovery grant allows us to build on my earlier research findings and focus on early strategies to stop harmful protein clumping before it causes damage.  

It also allows me to explore multiple models in more detail, speeding up the search for potential treatments for ALS/MND. 

Why is it important for Australians to continue to donate to FightMND? 

Investment into MND research is crucial for translating findings from basic research into potential therapies. This, in turn, significantly advances our progress toward clinical applications.  

Donations are vital to support the groundbreaking research happening in Australia and all over the world. This funding is helping accelerate research with the ultimate goal of finding effective treatments and one day a cure for MND.  

Investing in research to beat the Beast 

The road to a cure for MND is long and challenging, but it’s one we’re travelling together — step by step, breakthrough by breakthrough. The only way forward is through relentless, world-class research. But that research takes time, dedication, and, most importantly, investment.  

For a decade, we’ve stood united in the fight against MND, determined to defeat the Beast. Thanks to the incredible generosity of our supporters, Australia has emerged as a global hub for MND research. The country’s scientists are not just contributing to the fight — they’re leading it, and their work is making waves worldwide. 

In 2024, FightMND is investing a further $18.89 million into groundbreaking research and vital care initiatives. This investment brings our total funding to a staggering $115.78 million

The projects we’re supporting this year build on the remarkable progress we’ve made so far, with one clear goal: to improve the lives of those living with MND and bring us closer to a cure.  

Want to see how your support is making a difference? Dive into our 2024 Cure and Care Investment Booklet to discover the incredible projects we’re backing in 2024. 

Together we can beat the Beast that is MND.  

Researching gene therapy to improve motor neuron health

Researching gene therapy to improve motor neuron health

Dr Bec Sheean, Mel Yang, Archie Davis, Dr Margreet Ridder and Assoc Prof Trevor Chong. FightMND grant announcement and presentation of the first Dr Ian Davis OAM Award Florey Institute Melbourne on Friday, November 8, 2024.

To beat the Beast, researchers need to understand the causes and progression of motor neurone disease (MND). Understand the challenges in drug development and clinical trials. Understand how to target disease-causing genes.  

Dr. Margreet Ridder is a recipient of a 2024 Improving and Accelerating Translation (IMPACT) grant. Based at the Queensland Brain Institute at the University of Queensland, she is leading research titled Targeting Motor Neurone Hyperexcitability with Drug-Controlled Gene Therapy. This project aims to determine whether a gene therapy that slows motor neurone activity can improve their health. Potentially preventing MND. 

Dr. Ridder is the first recipient of the Dr. Ian Davis OAM Award. Named after FightMND Co-founder, Dr Ian Davis, the Award recognises and honours research excellence. It is presented to the highest-ranked project in the grant round.  

Here Dr. Ridder discusses her research and highlights the vital role of grants for MND research. 

What is your project about? 

Neurones are excitable cells. They use electrical signals to communicate with each other and the muscles in our body. Too much excitability, known as hyperexcitability, can cause neurones to die. This project aims to rescue motor neurones from hyperexcitability using gene therapy.  

What do you hope to achieve with your project? 

Ultimately, the goal of this project is to provide a gene therapy option for patients with sporadic MND. Sporadic MND is a diagnosis given to cases with no apparent family history of the disease.  

One of the first steps to bring a new gene therapy to patients is to show its safety and effectiveness in preclinical models. This research looks at this. 

What is new about your project? 

Researchers, including myself, have used a wide range of tools to control neurone excitability to determine their function in specific behaviours. We have adapted this technology as a therapeutic intervention to reduce motor neurone hyperexcitability in MND.  

How does your project contribute to the MND research community? 

Gene therapy has recently emerged as a strategy for treating MND. Specifically in cases where there is a family history of the disease. This research aims to provide a gene therapy avenue to treat all forms of MND.  

How does a FightMND grant help your project? 

This IMPACT grant makes this research possible! This project has been paused previously due to a lack of funding.  

Suspending research, or even worse, abandoning it, is a common reality for many researchers. 

What is different about your project compared to existing research? 

Medications reducing hyperexcitability, such as rilozole, focus on reducing the excitation of neurones. This research focuses on increasing inhibition instead. To achieve our goal, we have engineered a human silencing receptor as part of this work.  

Why is it important for Australians to continue to donate to FightMND? 

One of the devastating things about MND is that time is not on your side when you are diagnosed. Without sufficient funding for research, there is a real risk that promising research projects will be put on the shelf, or worse, stopped.  

We need an army of researchers that are sufficiently funded if we want to speed up research discoveries. 

Advancing research: FightMND’s 2024 grant round 

In 2024, FightMND is investing $18.89 million into research and care initiatives for people living with MND.  

As we mark 10 years of FightMND, this year’s funding brings our total investment into MND research to an incredible $115.78 million!  

This year’s projects continue to build on the incredible work done in the MND research space to date. Each one aims to improve the lives of those living with MND and their families. Want to know more? Check out our 2024 Cure and Care Investment booklet for more information about the incredible projects receiving funding in 2024. 

FightMND to invest $18.89M in the fight against MND in 2024

FightMND to invest $18.89M in the fight against MND in 2024

FightMND is investing a further $18.89 million into motor neurone disease (MND) research and care initiatives.  

Founded in 2014 by Neale Daniher AO, Dr. Ian Davis OAM and Pat Cunningham, FightMND was established to raise awareness and vital funds for MND research. Over the past decade, it has grown into one of the world’s largest independent funders of MND research. 

As we mark 10 years of FightMND, this year’s funding brings the total investment into MND research to an incredible $115.78 million

This year’s projects continue to build on the incredible work done in the MND research space so far. Each one aims to improve the lives of people living with MND and their families. Our 2024 Cure and Care Investment booklet has more information about all the projects receiving funding this year.  

Cure investment 

We’re committing more than $15.44 million of this year’s investment to MND Cure research. This funding will support 25 projects, and five career development awards. Selected through our competitive grant round, these projects include: 

  • 4 drug development projects to advance promising new drugs or therapies 
  • 7 discovery projects addressing key unknowns in MND research, particularly its causes and progression  
  • 11 Improving and Accelerating Translation (IMPACT) projects focusing on overcoming challenges in MND drug development and clinical trials 
  • 2 infrastructure projects to advance MND research infrastructure 
  • 1 Massey Charitable Trust grant  
  • 1 mid-career research fellowship to support mid-career researchers focusing on MND 
  • 4 early career research fellowships to support early career researchers focusing on MND. 

Since 2014, we’ve invested more than $100.67 million into Cure projects. This investment has transformed Australia’s MND research landscape. Today, Australia stands as a central hub for MND research, with our dedicated researchers playing a crucial role in the global effort. We now understand some of the genetic mutations and biological events that may cause MND. Moreover, Australians living with MND have more opportunities to participate in research and clinical trials than ever before. 

Care investment 

In addition to our support of Cure research, we also work to support Australia’s MND community through our investment in Care initiatives. In 2024, we’re investing $3.45 million into 10 MND Care support projects for Australian’s living with and affected by MND.  

Our investment into Care initiatives started in 2017, with Care research investment starting in 2022. Since then, more than $15.11 million has been invested into this area.  

This investment focuses on three key priorities, which were developed in consultation with Australia’s MND community.  

  • Evidence: funding care-focused research to inform the best practices for supporting people with MND, their carers and families. 
  • Standards: investing in the creation of national standards and guidelines for MND care.  
  • Support: providing targeted support through organisations delivering MND care and services.  

It is important to note that FightMND is not a care service provider. This is the role of MND Australia, the state MND associations, MND&Me and other organisations serving the MND community. Our investment works to complement the existing work of these groups and Australia’s front line MND Care providers.  

This investment aims to improve the lives of Australians living with MND, their families and the people caring for them.  

It takes people. Thank you!  

FightMND would like to acknowledge the contribution of the Federal and Victorian Governments, and our major partners Coles, Bunnings, the AFL, Seven Network, Herald Sun and Chemist Warehouse.  

But our biggest thanks goes to you! Our amazing donors, Beanie buyers, community fundraisers and volunteers. Your generosity ensures we can invest in research and care initiatives for those living with MND and their families. This investment brings us closer to finding effective treatments, and one day a cure for this insidious disease.  

In the coming weeks we’ll be sharing with you some of the projects to receive funding during the 2024 grant round. Stay tuned!  

Neale Daniher named 2025 Australian of the Year for Victoria 

Neale Daniher named 2025 Australian of the Year for Victoria 

FightMND Co-founder and Patron, Neale Daniher AO, has been named the 2025 Australian of the Year for Victoria. Announced during a ceremony at the Victorian Arts Centre on November 8, Neale was recognised for his advocacy to find a cure for motor neurone disease (MND).  

Diagnosed with MND in 2013, Neale, in partnership with the late Dr Ian Davis OAM and Pat Cunningham, whose wife Angie sadly died from MND in 2016, established FightMND in 2014 to raise vital funds and awareness for MND research. Today, FightMND has grown into one of the world’s leading independent funders of MND research with more than $97 million invested in research and care initiatives to date.  

Upon receiving this honour, Neale said:  

“While it is not the reason we do what we do, on behalf of my wonderful family I am humbled and honoured to be named as Victoria’s Australian of the Year. 

As a tight knit family, together we have taken on motor neurone disease, and I am so appreciative of the emotional strength of my steadfast wife Jan and children Lauren, Luke, Bec and Ben and their partners. Their enduring guidance, and unwavering support has allowed me to maintain my battle against ‘the Beast’.  

My nomination is also a nomination for everyone who has been impacted by this insidious disease and allows us to appreciate that this fight is not yet over and continue our focus on the search for a cure.  

It is a privilege to be recognised amongst this group of amazing and inspirational Victorians whose talents and efforts were identified as our state’s nominations for 2025, and I congratulate my fellow nominees Madeleine Buchner OAM, Professor Deborah Cheetham Fraillon AO and Wayne Holdsworth on their achievements and will look to watch on as their efforts continue to unfold. 

I am grateful to the awards committee, but this is more than an individual recognition and I thank and acknowledge each and every person amongst our community, my tireless and hardworking colleagues at FightMND, friends and family who have all been with me on this journey.  

It is with pride and gratitude that I will be representing our state, and all those living with or impacted by MND, at the National awards next year. Play on.” 

FightMND CEO, Matt Tilley congratulated Neale on this incredible honour. 

“This is more than a wonderful recognition of Neale’s unwavering passion and leadership, this is also a moment that should bring a smile to the face of everyone who’s bought a beanie, taken on an ice bucket challenge, donated, or contributed to the fight against the Beast.  

It also touches the many families living with MND and recognises the power of one is always the strength of many.” 

The FightMND team would like to congratulate Neale on this recognition of his amazing work.  

Stay tuned for Australian of the Year 

Neale will join the other state and territory Australians of the Year for the national awards announcement on 25 January 2025 in Canberra.  

To learn more about the Australian of the Year Awards and the state and territory winners for 2025, visit https://australianoftheyear.org.au/

Daniher’s Drive raises over $2M for FightMND 

Daniher’s Drive raises over $2M for FightMND 

Start of the 8th Daniher’s Drive Wiiliamstown Oval on Thursday, October 10, 2024.

The chequered flag is down! Our incredible Drive teams have crossed the finish line for Daniher’s Drive 2024, and what a journey it has been! 

This year Daniher’s Drive raised more than $2 million for vital motor neurone disease (MND) cure research and care initiatives. This phenomenal achievement is thanks to the tireless efforts of our Drive teams, the generosity of the Australian community and the unwavering support of our fantastic Drive partners.  

Thanks to our Drive partners, including gold partner, Chemist Warehouse, silver partner PSC Insurance, raffle partner Jayco and night event partners CMV Truck and Bus and Bayside Coaches. Thanks also to our supporters Coles Express / Reddy Express, The Card Network and Hertz.  

The biggest thanks must go to our Drive teams. A big part of Daniher’s Drive is connection, and our Drive participants are family. Each have their own reason to take part in the Drive, with many having a personal connection to MND. We are continuously blown away by their fundraising efforts each year. To everyone who participated in the Drive, thank you.  

The funds raised through the Drive will be invested into MND research and care initiatives. Stay tuned for the announcement of our 2024 grant recipients later this year to learn more about the impactful projects and initiatives receiving support. 

While the Drive may be over for another year, you can still show your support during October, thanks to our incredible partner, Chemist Warehouse. Simply visit any participating Chemist Warehouse store, excluding Western Australia, and donate at the register. Be quick! The campaign finishes on 30 October 2024.  

Together we can drive towards a world without MND. 

Terry and Chris Daniher wave the flag to start the Drive. Wiiliamstown Oval on Thursday, October 10, 2024.
Chris Daniher Ice Bucket Challenge. Avoca Community event Daniher’s Drive on Friday, October 11, 2024.
Port Campbell Surf Life Saving Club. Daniher’s Drive on Saturday, October 12, 2024.

Congratulations to our Jayco Raffle winner! 

Congratulations to Tahlia Heath who walked away with this year’s major prize a 2024 Jayco Starcraft Bushpack 19.61-3 Caravan valued at $65,590. With its very own FightMND decals and colours, your brand-new caravan is going to turn heads wherever it goes. 

Congratulations also to Cathy Fryer who walked away with a $4,999 gift voucher from The Card Network.  

Join the Drive in ’25: expressions of interest now open 

Daniher’s Drive isn’t just an event. It’s a celebration of people and connection. Whether you’ve been touched by MND or want to make a difference, Daniher’s Drive is your chance to meet likeminded people and share unforgettable moments. 

Expressions of interest are now open for Daniher’s Drive 2025. Don’t miss out on this unique opportunity to connect, raise funds and awareness for MND research and care initiatives and have a great time while doing it! Register your interest today and be part of something truly special.  

What are you waiting for? Register your interest today! 

Michelle’s legacy: a future free of MND 

Michelle’s legacy: a future free of MND 

Michelle has chosen to remember her beautiful son Robbie with a gift in her Will to FightMND

Robbie Caliste was a remarkable and vibrant young man. He cherished his work at the MCG, enjoyed living in a share house with friends, and was an avid supporter of both the St Kilda Saints and Melbourne Victory. However, his world was shaken to its core when he received devastating news at just 34 years old: Robbie was diagnosed with motor neurone disease (MND)

Faced with this monumental challenge, Robbie exhibited extraordinary courage. His family, led by his parents John and Michelle, rallied around him, creating the “Caliste Bubble” and providing round-the-clock love and care. The Caliste family navigated sleepless nights, physical hardships, and the heart-breaking progression of Robbie’s MND. 

After a brave battle against the “Beast”, Robbie passed away peacefully at home, aged just 36. His story echoes the experiences of many others affected by MND, highlighting the pressing need for advanced research, improved treatments, and ultimately, a cure. 

To honour Robbie, Michelle has generously chosen to include a gift to FightMND in her Will, driven by the hope that other families might be spared the anguish her family endured.  

“We made a promise that we would try and help find a cure for those who have to live with MND like our son Robbie.” 

Michelle and Robbie Caliste with Neale Daniher in 2017.

By including FightMND in your Will, you can join Michelle by investing in a future where MND no longer devastates lives. While significant progress has been made, the journey towards a cure requires substantial time and resources. Your legacy could be a brighter future for all those impacted by MND, helping to fund world-leading cure research and care initiatives.

We would be delighted to answer any questions you might have about including a gift in your Will to FightMND. For a confidential discussion, please email Eloise Shepherd at wills@fightmnd.org.au or call us on 1800 344 486 and ask for our gifts in Wills team.   

Together, we can invest in world leading MND cure research and care initiatives. Together, we can ensure a brighter future for all those affected by this devastating condition.  

Together we can beat the Beast and strive towards a future free of MND. 

A gift of compassion: Judith and Keith’s story 

A gift of compassion: Judith and Keith’s story 

Judith with her dog Taxi. Judith has left a gift in her Will to FightMND

In 1985, while recovering from triple bypass surgery, Judith’s Dad, Keith, knew something wasn’t quite right. He noticed the muscles in his forearms starting to twitch. This wasn’t an isolated occurrence. Before going into hospital, he tripped over while walking the family dog.  

Then came the devastating diagnosis: Keith was diagnosed with motor neurone disease (MND). He was given three years to live. 

As the Beast ravaged his body, Judith remembers the muscles in her father’s arms and legs wasting away. Keith became less mobile. Judith’s mother had to help him shower and dress. He could no longer walk the dog.  

As the disease progressed, Kevin started to have difficulty breathing. His doctors thought physiotherapy might help and admitted him to hospital. It was then Judith’s family was told he had three days to live. 

“I remember visiting him in hospital the last time… seeing him struggle to breath was extremely upsetting.” 

Back in the 80s, not much was known about the Beast. We are learning more about MND every day. Thanks to wonderful supporters like you we have come so far, but research takes a lot of time and money. We still have a long way to go. 

Providing hope: Judith’s tribute to Keith 

Keith dad passed away in January 1987. He was 64 years old. 

He didn’t make the three years he was given to live. But Keith was a fighter, showing tremendous courage against MND. This is why we fight.  

The lasting impact MND has on families like Judith’s highlights the urgent need for research and support. 

By including a gift in her Will to FightMND in memory of her wonderful dad, Judith is providing hope that one day a cure will be found. 

Judith as a young girl with her beloved father Keith. Keith died from MND in 1987

Including a gift in your Will 

By including a gift in your Will to FightMND, you’re investing in a future where families like Judith’s don’t have to endure the heartbreak of losing a loved one to MND. 

A gift in your Will to FightMND is the gift of helping us better understand MND. It is a 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.  

If you would like to have a confidential discussion about the impact you can have on MND research long into the future, please reach out to Eloise Shepherd our Gifts in Wills Coordinator at wills@fightmnd.org.au or 03 7052 7004.  

Challenging 27 her way: Leanne’s story 

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

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 wills@fightmnd.org.au or 03 7052 7004.  

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

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.