Josie's Story
April 11, 2026
Josie Caruso is the 2026 Great MND Relay Ambassador. She's determined to keep moving in honour of her mother, Vittoria, who sadly lost her life to MND over a year ago.
"Mum loved being part of her community and gathering with the MND community. I walked with Mum at The Great MND Relay when she was first diagnosed. Even though she won’t be here with us this year, I’m determined to keep moving in her honour."
If there was one word to describe Vittoria Caruso, it would be “fierce”. A proud Italian woman, Vittoria migrated from a little town called Feroleto Antico in Calabria, Italy to Australia when she was just 17, answering an advertisement to work as a seamstress. She settled in the northern suburbs of Melbourne and started her family, welcoming four beautiful children.
A single parent for most of her life, it was in her mid-30’s that Vittoria found her true passion: aged care. Her career spanned 30 years and saw her not only working in dedicated aged care facilities, but also with in-home help.
“Mum was always a fighter,” says Josie, Vittoria’s eldest daughter. “She had that character. She was always determined and would fight for the things and people that she loved.
What you saw was what you got with her. Mum faced a lot of adversity in her life, but her courage really shone when she stepped into the job in aged care.”
It was not long after her retirement that Vittoria started feeling that things weren’t right. She started to choke on little bits of food and water, and noticed changes in her swallowing. Ever the pragmatist, Josie started looking around for different specialists to investigate what was going on.
All of this was happening in 2020 during the height of the COVID-19 pandemic, which added further wait times and delays. After nearly a year and four misdiagnoses, a neurologist confirmed that Vittoria had bulbar onset MND.
“It was a very tough time,” recalls Josie. “Italian was her first language, so I heard the news first and then had to explain it to Mum. It was a very tough conversation to have. The neurologist had printed a pamphlet in Italian for her to read, but I don’t think she really understood what it meant. I didn’t really understand it.”
No one’s MND journey progresses in the same way. For Vittoria, the first thing she lost was her voice. And sadly, by the time she received her diagnosis, her voice was too far gone for her to do voice banking.
“That was so hard for her and heartbreaking to watch because she was very social and loved to talk. She tried so hard for as long as she could,” says Josie.
“MND doesn’t come with a manual. So for the first year, we were really in the whole windfall of the diagnosis. We were trying to figure out: how can we help? What does it mean for our family? What do we do? How do we help Mum get through this?
We learnt to live with it. We got really good at pivoting and adapting as each new change happened. You don’t know what you don’t know, until you do.”
For the first few years of her MND journey, Josie still worked whilst caring for her mum. But after a few years of feeling more physically and mentally exhausted, she left her job as a director of early childhood to prioritise caring for Vittoria.
“I would not take that back for anything. Having that time together and making those memories. We lived every day as it came,” says Josie.
“Mum was a very warm and loving person. Even though she couldn’t speak, you could feel it in her energy. She was my everything, all my life.”
One of the biggest challenges Vittoria faced was language. Understanding medical terminology is often hard enough, let alone when English is your second language. To help with this barrier, Josie attended every appointment to translate the conversations and be Vittoria’s voice. She even created different ways for Vittoria to communicate, teaching her Auslan, and giving her picture flash cards with the word written in both Italian and English.
“It was very hard for her to write in English, especially at the end. She would often mix Italian and English. We used to call it the Da Vinci Code because we would have to decipher what she’d written,” laughs Josie.
MND takes so much from you. But it never took Mum’s sense of humour. We loved listening to her cackle because it was her voice.
Vittoria had two big passions in life: family and food. A beloved mother and doting grandmother, she spent as much time as she could with her family, cooking, attending various sporting games, and even having big family sleepovers in the living room.
“Food was her joy. She was Italian! Mum cooked with feeling. There was no recipe, it was all feeling. I’m still trying to figure out her recipes, especially for Crispelle, which are these Calabrian savoury donuts,” laughs Josie.
“We used to eat dessert before any food, because it was the only thing she could eat. Right up until a week before she passed, 5 years in, she ate. You need to look at what’s important to the individual. It has to be about them.”
Throughout her MND journey, Vittoria received a lot of help from MND Victoria and the MND clinic at Calvary Health Care Bethlehem. Being over 65, she didn’t qualify for the NDIS and instead was reliant on a system that isn’t designed for people with a progressive neurological disease.
“No system is perfect, but the aged care system failed her. Every day was filled with about 20,000 hurdles that we had to overcome and problem solve,” says Josie.
“We are so fortunate to have such expertise here in Victoria. Calvary became our second home, and the specialised care Mum received there was amazing. And MND Victoria’s motto truly sums them up: until there’s a cure, there’s care. Care is through to their core, they embrace you wholeheartedly. Our MND Advisor, the Equipment Service, which saved us thousands of dollars, and the carer programs.
There are so many carers out there that don't realise they're carers. It's what you do for your family, you take care of them. But having a dedicated space to connect with other carers was amazing. The people that I met through the programs are still my friends. We all went through that journey together.
MND doesn’t just affect the person diagnosed: it also has a great impact on their loved ones, who face their own challenges along the way. Josie is using her lived experience of MND to help advocate for change, especially when it comes to the aged care system. She is part of a number of groups and is even Co-Deputy Chair of the Australian MND Guideline Project, which is looking to create Australia’s first evidence-based guideline to improve the care and quality of life for people living with MND.
“There needs to be a change, and it won’t be done if I’m sitting back watching it. As horrific as it’s been, meeting the carers, the families, and having the strength of every single MND family and the whole community, is dear to my heart. It’s the shared understanding, we just know,” says Josie.
“You don’t know MND, those three little letters, until you have someone you love go through it. You can’t explain it. It’s a bond that I will forever have with my family and my larger MND community. Mum was still here when I started my advocacy. She came with me to all the meetings and events. I’m healing through helping. Doing this, for her and people like her, means the world.”
As well as being an advocate, Josie and the Caruso Family are incredible fundraisers for MND Victoria. From attending MND Victoria community walks in Traralgon, Melbourne, and Bendigo, to taking part in our educational campaign Shut Up! For MND, and participating in the greatest event on the MND calendar, The Great MND Relay, they have raised thousands of dollars for MND Victoria over the last few years.
“Community is everything to me. It’s something that Mum loved, being part of things. I do it for Mum and for all the families touched by MND. I'm incredibly privileged to have met the people I've met under these horrible, horrible circumstances. And I’m incredibly honoured to be doing this for her.”
Josie’s passion for helping others is a testament to her. She is carrying on her mum’s legacy to help others and hopefully make it that little bit better for them.
“I put my name down for things that I know mum struggled with. I know that I can make a difference because I saw the struggle. I saw everything that can possibly help or make a change,” says Josie.
“I feel that I've helped heal on my journey and helped my grief by helping others. Grief is not at the end for us. It’s all the way through. At the end of the day, you know the end result. You just don’t know what’s going to happen in between. You're grieving the loss of so many things along the way.”
It’s been over a year since Vittoria passed away, but Josie feels her mum’s spirit every day in lots of little ways.
“I still talk to Mum every day. I know she’s here with me and is looking down on us. I feel very connected to her when I’m cooking, making pizza and bread from scratch, just like she did,” says Josie.
“It’s tough watching a loved one go through MND and knowing that there’s nothing you can do. We were incredibly privileged to have her for the five years we did after diagnosis. Every moment, every second, every day counted, and we would make sure it did, taking her out to places that she loved and spending time together.”
This year, Josie is the Event Ambassador for The Great MND Relay, an event where the MND community can gather together in strength, in solidarity, and in celebration.
“The Great MND Relay is all about community. Even though MND is terrible, we can all gather and celebrate this terrible disease that has brought families closer and changed people's pathways for life. Because you realise that life is too short and too precious. It's not worth the journey if you don't have anything to show or feel connected about, and people to share it with.
People should come to The Relay to feel the community, understand what we do for each other, and to support these people and families on this journey. MND are three little letters that may not mean much to you, but they mean a lot to us as a community. Come and meet us. We'll embrace you regardless of who you are.”
The Great MND Relay is happening on Saturday 16 May 2026 at Lakeside Stadium, Albert Park. Find out more information and register at mndrelay.org.au
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