It also highlights the impact of MND on regional areas and offers advice for children of MND patients.

https://www.instagram.com/als_and_us?igsh=MWxjdGV5d2Z3dmR0cQ==

In our latest podcast episode, we sit down with Matt Tilley — former radio star turned CEO of FightMND — to talk about a career pivot driven by purpose.

After years behind the microphone entertaining millions, Matt stepped into a very different role: helping lead the fight against Motor Neurone Disease and supporting the mission started by AFL legend Neale Daniher.

He shares how he’s adapting to the physical challenges of MND, staying active through swimming, and leaning on a strong support network, including family and his mates at Pennant Hills Golf Club.

This is a story of resilience, community, and finding joy in every day.

Sue opens up about her own health struggles with cancer and the importance of support systems. Together, they emphasize the significance of finding joy amidst adversity, the value of humor, and the need for caregivers to seek help.

Their story is one of resilience, love, and a commitment to raising awareness for MND.

In this episode, Jean reflects on caring for her husband Greg, who died from MND in 2025. Jean and Jane discuss the physical and cognitive challenges of the disease, the need for clearer communication about cognitive changes, and the vital role of community support for people living with MND and their carers — including how to navigate life and identity after loss.

They are both from Warnabool. Hayley is lving in Ballarat where she is studying biomedical science and goal is to become a bio technician to aid in MND research.

Her brother Cameron is a town planner married with 2 little children and still lives in Warnabool.

They speak with such love of thier father and obvoius anxiety for thier family

They are appraching this journey with courage, love, honesty and laughter.

Salma's MND research experience has assisted in her development and implementation of the Speech Pathology and Voice Banking services for MND Queensland where she is currently a practicing clinician.

This is a very brief summary but if I spoke of all the research and publications we would be here all day.

Brad has a huge brain and a huge heart.

John's attitude to life is inspiring, always giving first. As he says "When God closes a door he opens a window"

John has always loved music, now he is following his passion, writing and recording songs......that make you sing and dance around the house, John gifts joy.

You can listen to his songs on Spotify  https://open.spotify.com/artist/1DbZOED0Nsdk5tsV3W2OA9?si=1sVXp5ktQ6CTsukYxvH96w

iTunes 

https://music.apple.com/au/artist/john-hanley/1498987867

Watch him on You Tube

https://youtu.be/cSRyaOYAn6M?si=eGdSnQvDFIVbHCQU

Also thank you John for allowing me to use "No Time To Cry" on the Let's Talk MND Podcast xxx

He also tells really bad dad jokes :)

Peter and his wife Rhonda have not let MND slow them down, enjoying retirement, travel and family and friends - Peter and Rhonda love a good laugh.

Many of us don't know that once we've been diagnosed with a terminal illness we have access to our Superannuation.

Kathie is the CEO of "Release My Super" and she tells us how you can access your Superannuation 

You also may be eligible to make a TPD super claim for compensation if you've suffered an injury or illness that permanently prevents you from working in your normal job or any other work for which you are suited by education, training or experience.

Your super fund may include income protection insurance allowing you to claim financial support when an injury or illness is holding you back from earning income from your regular job.

All superannuation funds have death benefit payments, which are usually made up of contributions as well as any insurance benefits attached to the policy.

You can contact Kathie via the website and they will do all they can to assist you.

https://www.releasemysuper.com.au

Paul also is one of the leaders of the MiNDAUS Registry, he explains it to us, how it can help and how we can help.

https://www.mindaus.org

She wants to share thier story.

This one may be a little hard to listen to. 

Whilst Peter does not deny the challenges MND have given him, he is living his life with intention, joy and a seriously wicked sense of humour which he delivers to us via videos

He has an alter ego, "Cranky Pete", who points out the ridiculous and things he just doesnt like.

Peter's website, where you can find out all "things Peter" is 

peterchambersmnd.com

Clare asked if she could interview me - thats a twist!.

I said yes, and this is my story with MND

As an Ambassador for MND Australia, Peter is passionately committed to raising awareness by amplifying the voices of those affected; as well as fostering greater understanding, compassion and meaningful change around this devastating disease. 

Peter is an accomplished professional with extensive experience within the private, public, and non-profit sectors; encompassing leadership, behavioural change, stakeholder engagement and governance. Peter also served with distinction in the Royal Australian Air Force for over 35 years, an experience that shaped his resilience, discipline, and deep sense of purpose.

Julie has worked with people with MND for the past 19 years.

Julie was the project manager on the new Lived Experience Network (LEN) which brings together people with Lived Experience and people who wish to research different aspect of MND.

Working on projects with people who have Lived Experience is teaching her more about what it's like to live with MND and thier priorities.

Mike chats to us about Estate Planning, Wills, Powers of Attorney, all the things we tend to put off.

Mike Poynter

She is the Member for Pakenham.

Emma was diagnosed with MND in April of 2024.

Emma is so open and honest about her diagnosis with MND and the changes that are happening to her and her family.

Emma is smart, funny, loving and loyal.

Enjoy her Podcast.

https://www.parliament.vic.gov.au/members/emma-vulin/

You can read the article here

https://rb.gy/amovj9

Jason was diagonsed in 2017 at the age of 39.

Together they are battling this disease and raising awareness at the highest levels.

They ROCK.

Featuring Natalie Parke and Phil Camden

Her research area focusses on the connection between humans with Nature / animate worlds and how this impacts mutual well-being. In particular.

Rachel is also an author, a mother and the widow of Dr Justin Yerbury.

Sunday 28th of July was the 1st anniversary of Justin leaving us.

He is former professional rugby league player. sports commentator he is also known as the voice of the NRL. 

But we are not going to discuss any of his career.

Matt's beloved brother Aaron died in March this year of MND, Matt's pain is raw.

Which basically means in Melbourne he is a hero.

However, David is a co-founder of Brewmanity which is more than just a brewery; it's a Melbourne beer brand committed to doing good. Since its inception in 2015, Brewmanity has been dedicated to raising funds for Fight MND (Motor Neurone Disease) in support of David's friend Neale Daniher, with contributions to date nearing $970,000.

Excitingly for David  Brewmanity, has just opened  Melbourne's first rooftop brewery bar in South Melbourne. Brewmanity is more than just a brewery; it's a Melbourne beer brand committed to doing good.

David is such a champion of Fight MND, raising funds and awareness about MND.

If you want to come to Brewmanity's fundraiser on 31st May here is the link to buy tickets. https://www.eventbrite.com.au/e/big-freeze-brewmanity-brewery-tickets-896772720347?aff=oddtdtcreator

Go Gentle is a charity which promotes end of life choices. including the option of voluntary assisted dying. Go Gentle is instrumental in passing voluntary assisted dying laws in all six states. 

 Jane Morris is the president of Dying with Dignity Victoria. She started her career as a nurse and then as a mature age student, completed a master's of bioethics and studied the topic of VAD with avid interest.

Jane is a member of our community. Her mother died of MND 10 years ago. Jane's mother's death was a catalyst that spurred her into action to take on the role of a staunch, vocal and active advocate for Victorian VAD legislation.

 I understand that today may be very difficult to listen to, but I think it's really important that we are as educated as possible and are aware of the choices that we have for our own life.

It is really interesting to hear her perspective on MND and losing her loved dad. We should all interview our kids, it was illuminating,

He served 40 years as a minister, he worked in Africa (DR Congo, Nigeria, Kenya, Rwanda) as well as NZ and Australia.

He has been living with MND since 2013.
He has raised $500K through his local community Big Freeze slides. 

He tells us about Monepantel which is a well-known veterinary drug. It has been shown to have an effect on the abnormal accumulation of protein in cells. This accumulation is associated with motor neurone disease. Monepantel works by increasing the recycling and removal of excessive or abnormal proteins. 

Results from phase 1 of this trial suggest that monepantel was well tolerated. In fact it showed a slowing in progression of MND. 

In July of 2024 Monepantel has been included in the Healy ALS trials, in Boston, USA, which means the study will be fast tracked.

To learn more about the studies please go to 

https://www.pharmaust.com

He works from the Walker Lab at the Queensland Brain Institute

Adam has focused on uncovering the mechanisms of MND and FTD for over 15 years. He obtained his BSc(Hons) in biochemistry from the University of Tasmania, PhD in neuroscience from the University of Melbourne, and was a postdoctoral fellow at the Center for Neurodegenerative Disease Research at the University of Pennsylvania and at Macquarie University, Sydney before founding the lab at QBI.

When I asked Adam is there hope he answers "yes we have hope"

Jenne has participated in the now concluded Courage ALS clinical trial, the ongoing TMS study and neuromuscular ultrasound research, and contributed to SALSA and the BNRC's biobank.  For her family and everyone impacted by MND, she wants to contribute as much as she can whilst she can.

Jenne is an incredibly precious person.

He is the Stewart, Hughes and Wendt Distinguished Professor.Faculty Network Member of the Duke Institute for Brain Sciences.Associate of the Duke Initiative for Science & Society

Rick is going to discuss the phenomenon he has witnessed and studied of MND reversals.

He also tells us about ALS Untangled, which reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.

He said all he wanted to achieve in life was to be a fater nad play professional football - well you did that mate. RIP Carl.

Carl Webb is a former Australian professional rugby league footballer who played as a prop, second-row and lock in the 2000s and 2010s.

He has played for the Brisbane Broncos, North Queensland Cowboys and the Parramatta Eels in the NRL.

He also played for Queensland in the State of Origin series, Australia at international level and also the Indigenous All Stars side.

 We are not here to discuss football which is just as well for Carl as I would be really hopeless at that.

In 2020 Carl was diagnosed with MND he was only 40.

Since then Carl has set up the Carl Webb Foundation to raise awareness and funds for MND – in my mind that makes him a true champion

Bec represented Victoria in both junior and senior level rowing, winning two Queen's Cups during her time. She had the honour of being selected to represent Australia culminating in the World Championships in 2013 in South Korea. 

Bec studied business and pursued a career in accountancy, working in the field of finance as an accountant for several years.

Then, in 2013 the Daniher family lives were turned upside down when her father Neale was diagnosed with MND.

Bec's dad is Neale Daniher AO a former Australian rules footballer who played with the Essendon Football Club.  He was later the coach of the Melbourne Football Club, and held coaching positions with Essendon, Fremantle and West Coast.

However, the Danihers are not a family to sit around and do nothing.

Bec is here to discuss Fight MND and particularly The Big Freeze, of which she is the Campaign Director, and along with Neale the face of Fight MND.

http://fightmnd.org.au

Bruce has been diagnosed with MND and it is inspiring how they are working together.

The are finding thier new normal

Bruce and Nat don't have a bucket list they want to spend their time walking and holding hands, and being with family and friends.

Bruce is excited for BBQ season he can't use his arms or eat but he is going to pass his skills to his daughter…… whether she likes it or not!

Bruces tells us "Don't worry about what is outside your control just be the best person you can be …… be coachable, and learn to live in the moment"

Leanne Sklavenitis is an award winning, registered Personal Trainer, Gym & Group Exercise Instructor with over 32 years in the health and wellness industry.  Her passion for helping people has seen Leanne travel the world as a Speaker, Trainer, Consultant and Coach. She continues to successfully help her clients achieve their health, weight loss and well being goals on a global scale through her online wellness programs at fitnesstips.com.au.  

More recently, Leanne's drive for motivating healthier communities has pivoted to take on a personal focus after being diagnosed with Motor Neurone Disease (MND), also known as ALS and Lou Gehrig's Disease. "The Beast", as former Australian AFL player, coach and "Fight MND" Co-Founder, Neale Daniher calls MND, has not dampened Leanne's determination to live an AWESOME life and passionately advocate for well being, despite the challenges this disease brings.

Fit & Fabulous no matter your age!

www.fitnesstips.com.au

Changing Lives & Creating Inspiration!

www.leannesklavenitis.com

https://www.facebook.com/leannesklavenitisfan

On July 7, 2015, Tim was diagnosed, out of the blue, with stage 4, metastatic prostate cancer

I read an article in The Australian Newspaper that resonated with me, so strongly. Tim discusses the importance of intimacy when sex is no longer an option.

https://www.bytimbaker.com/

 Honours and PhD degrees. Since 1978, Professor Cheema has held research and teaching appointments at Monash University, The University of North Carolina at Chapel Hill USA, The University of Melbourne, The Walter and Eliza Hall Institute of Medical Research and The Howard

Florey Institute. He spent approximately 10 years engaged in MND research as well as a volunteer with MND Victoria.

 He played a major role in bringing into Australia the mouse and rat models of MND i.e. transgenic G93A SOD1. 

Also, he initiated the setting up of the human MND tissue bank. He served on the MNDAV council for several years. He was emeritus Professor at Monash Universitybefore full retirement.

Watch his YouTube here 

https://www.youtube.com/@biglapformnd-ci9jt?si=VspjwfvCgrcJczHg

You can donate here 

https://www.mnd.org.au/my-fundraising/2180/big-lap-4-mnd

A week earlier, the 40-year-old rugby player, devoted husband, and proud dad to Lizzie, 5, and Henry, 3, had been training for a marathon. Fit, strong, and full of plans, he had no reason to imagine his future would be cut short.

"I remember Annie sitting beside me, trying to hold back her tears," Ron recalls. "All I could think about was our kids. How do you tell them their dad is dying?"

Instead of surrendering to despair, Ron made a decision that day: MND would shape his life, but it would not define it. It might take his body, but it would never take his fight, his love, or his determination to inspire others.

In 1997 he was awarded an Order of Australia Medal and Australian Sports Medal in 2000. He is also inducted into the Sport Australia and Basketball Australia Halls of Fame.

Since retiring from sport, Troy has focused on giving back to his sporting community, nurturing talent, mentoring emerging athletes and being an advocate for inclusion. He lives and breathes his mantra that a person should be able to do all they set their minds to without limitations.

Janet and her husband Peter are a true team and focus on what brings them joy on their MND journey. 

They have started a monthly MND Mornington Peninsula group

They are organising a MND Victoria - Event - Walk for a Cause - Mornington Peninsula - on October 5th at Mornington Park. You can find out more about the walk here  https://share.google/o0XrbBYHZ6Lv7PU9N

Janet is involved in LERAP and the LEN and is a co-investigator on various care studies.

She has attended the international MND conference, given presentations at different seminars.  Janet is an advocate for how important it is for researchers to work closely with PLEx.

Janet and Peter are not ignoring the fact that MND is a life-limiting disease. They know life has its challenges in unexpected ways for everyone, and they have to face these and continue to live their best lives.

He was previously involved in playing rugby league and maintained a good level of fitness and continued to keep physically active. He has no links to family related MND. He is now participating in a clinical trial. Tim is receiving tremendous support from the local community.

You can watch Tim's Bucket List Beer Challenge 

https://youtu.be/bPuizvUaIKU?si=r47Rd6DFwG2cfMMJ

You can follow him on facbook

https://www.facebook.com/profile.php?id=61550926971644

Christen is also a long time friend of the Yerbury's .`

He also has a You Tube channel "MND Hacked" a channel dedicated to outsmarting Motor Neurone Disease with cutting-edge technology. From eye-tracking gaming setups, robotic legs and voice-banking AI to smart home automation that defies physical limits—he explores the digital tools that keep us connected, creative, and in control. The body might glitch, but the mind is limitless. Let's hack the diagnosis".

https://youtube.com/@hazhacked?si=cIwBYxhTyEnIIBUW

Dirt Church radio have kindly allowed me to share their podcast with you all.

Prof. Dominic Rowe shares very interesting information about the possible link between the environment with MND.

Pat is one of the 3 Amegos' of Neale Daniher, Dr Ian Davis and himself who started Fight MND.  Pat's wife Ange had MND and lost her battle with the beast in 2016, leaving behind Pat & their two small daughters

Pat has spearheaded the project management of the Fight MNDs largest public fundraiser – Big Freeze at the G, and also leads the FightMND Care Committee in overseeing the Care portfolio and grant application/award processes.

Pat is a great bloke and here with us today.

In this epidode they give us an update.

You can also watch on the "Let's Talk MND" You Tube chanel

All funds raised go to Prof. Dominic Rowe's Macquarie University Centre for Motor Neurone Disease Research. It is the largest MND research centre in Australia, receives no federal or state funding to operate and is completely run through the support of public donations and research grants. All researchers work together in one facility, on one topic, with one vision: a world without MND.

You can join or donate here https://firiesclimbformnd.org.au/cms/home

Barry has so much experience and is bringing his wealth of knowledge to many MND research projects.

He has also written a fabulous article on MND for Pharmacists so they can better care for their clients.

https://www.australianpharmacist.com.au/role-of-the-pharmacist-in-motor-neurone-disease/#:~:text=MND%20is%20a%20fatal%20disorder%20of%20motor,and%20improve%20a%20patient's%20quality%20of%20life.

Bec has been with Fight MND for 8 years

Bec discusses her career, he beloved dog Ruth and the amazing impact Fight MND has on the life of people with MND.

Bec is an especially gorgeous human.

Her website "Seasoned Traveller" teaches us how to eat outside of our comfort zones.

Sophia is a well-known face and voice on tv and radio

Her big news this year is Sophia is a judge in MasterChef.

But Sophia isn't here because of all I've discussed. Sophia's dad Greg has MND 

Mike is also the Chair of Fight MND.

Andrew Danson is a Director of The Leasing Collective. He is a board member of the South Melbourne Market.  Andrew is also President of Motor Neuron Disease Australia

He has lived experience with the disease, with his father having passed away at the start of 2020.

Fight MND and MNDA have recognised the need, and the desire of the MND community to work more closely together, MIke and Andrew talk about what has been done and the plans for the future

He is an MND champion, he is MND Vic's youngest ambassador.

Finn is unhappy about the discrepancy between NDIS and Aged Care.

Finn is "schmoozing" Politicians to make a change for his Glampa and others.

Andrew's past passions that this terrible disease has taken away were a drummer in rock band, cycling, gym. He worked in multinationals Coca-Cola (30 yeras), Woolworths and Unilever in management roles.

He was diagnosed first April 2022 and is still waiting for someone to say April fools!

Dom was my husband Robert's Dr.

For ten years he was Chairman of the MND Research Institute of Australia, taking this funding body from minor influence to the major source of funding for MND research in Australia. 

For the last nine years he has been instrumental in the set up and implementation of the Faculty of Medicine and Health Sciences at Macquarie University. Professor Rowe was awarded a Member of the Order of Australia in the 2012 Queen's Birthday Honour List for services to Medicine and Neurology, particularly Motor Neurone Disease and Parkinson's. 

He is a Chairman of Neurology at Macquarie University Hospital and the founder of Macquarie Neurology; an adult neurology practice that performs more than 10,000 patient episodes per year. Macquarie Neu-rology manages the care of more than 200 patients with MND, 600 patients with Parkinson's and 100 patients with Multiple Sclerosis.

You can watch this episode on You Tube 

https://youtu.be/BWpqU4MdIR4

He is a husband and dad, he has had to stop working, but is lucky to live on a rural property.

Matt has a beautiful attitude to life, is an amazing support to others with MND and is a demon at fundraising too.

I loved chatting to Matt.

Gethin has over 20 years of experience as a biomedical researcher, having published widely and secured almost $4M in research funding. Over the last 10 years as a senior research manager, he has directed a University Research Office and served as an Associate Dean of Research. 

Gethin also really likes bike riding :)

James had MND.

He is also squeezing the best out of life.

He also has his own Podcast in the UK called "Beyond MND" initially recording his own journey but has now expanded intot he MND Community - your going to like him a lot.

Neil was then diagnosed with MND

Nei and Maree take us through the story to date and how they are living as best they can with MND.

Damian says he is going to "ride until he dies"

He and his wife Jane & their 3 boys live in Hervey Bay in QLD.

They are a dynamic family. Living every day the best they possibly can with MND.

They are also absolute champions, raising awareness of MND through their Facebook page which you can join here and throughout the media.

https://www.facebook.com/profile.php?id=61556505521638&sk=mentions

They are also selling "merch" with all profits going to Fight MND https://damiansjourney.deco-apparel.com

Rowan supports  the improvement of quality and safety in palliative care, having served as a member of the Governance Committee for the Palliative Care Clinical Network for the Department of Health, and Co-Chair of the Network's Expert Working Group for Care of the Dying Person.

Dr Hearn is active in research into Neuro Palliative Care and telehealth with further research interest in carer support. Prior to working at CHCB Dr Hearn spent 15 years working in the National Health Service (NHS) in London, during which time he completed a Masters in Medical Ethics and Law and was lead for clinical governance for his service. 

Maxine is living her life with MND to the MAX

Here she and one of her tribe Snez tell us her story

Mark Puls was diagnosed with MND in 2022.

Like many people living with MND, he is doing for others. He is raising funds for Prof Domonic Rowe at Macquarie University. Last year, they raised $13k. They are planning another event this October.

This year, members of his family and some friends will climb Mt Fuji in Japan to raise awareness of MND.

In this podcast we talk to Mark and his wife Jill, some of the family and Mark's best mate David.

Phil has the most wonderful outlook on life and he is living it to the fullest - including playing golf.......how does he do this?