To mark 40 years of MND New South Wales this year, we are highlighting 40 years of stories from our members, staff, volunteers and experts.
You can help MND NSW continue supporting people with motor neurone disease by making a donation here.
Julie’s Story
Julie has been working for MND New South Wales for eight years.
Before then, she was involved with other programs supporting MND, muscular dystrophy and MS for many years.
A creative at heart, Julie has a fashion background and is a couture dressmaker by trade. Some might say it’s an interesting change of career, but for Julie, her creativity is even more relevant in her role at MND as an Equipment Support Officer.
You see, it’s that same expert eye for detail and fashion that Julie relies on to assess a client’s current situation and source the equipment they need.
From her days of couture pattern making, Julie’s learnt she has a keen eye to “make anything for the body”. That, teamed with her deep interest in helping people, as well as her passion for giving back, means her role at MND is a natural fit for her. It’s the needs of our clients that are the driving force behind Julie’s passion for what she does.
“We can’t help people with MND get better but what we can do is make people comfortable, confident, independent, all those things that we want for ourselves and for people with disabilities.”
Julie’s role at MND is to process referrals that come through the FlexEquip system and assess various equipment needs. She is the main point of contact between clients and health professionals, such as occupational therapists, physiotherapists and speech pathologists.
Without her and the team at MND NSW, many clients would be left to navigate their needs within complex systems all by themselves, without support from experienced staff who can offer recommendations and find the best solutions for each and every client.
“I'm not sure where people would go and what support they would get without MND NSW. It would be a very big struggle if you were to take that away. I don't know where they would get their equipment, whether it be for a year or two years. Because people don't really need the equipment for that long.”
MND is a complex illness and affects everyone differently.
“The large percentage of our members have a rapidly progressing type of MND. From diagnosis to death, it's probably 1-5 years.”
It’s a staggering fact and it’s one that Julie knows well – her own father was diagnosed with MND around 36 years ago. Back then, awareness of the disease was extremely low, especially in regional areas.
“I grew up in Orange, that's where my dad was. I guess to a certain extent, we thought he'd had a stroke, which can still happen today. But diagnostically so many things have changed now.”
And diagnosis is usually only the first hurdle people with motor neurone disease will face.
That’s why support from Julie and her team is so vital. Being able to access the right equipment at the right time can be life-changing for people living with MND.
It’s a challenging role, but every day Julie strives to do her best for her clients and their families.
“Our clients can see that we're doing the best we can to help them with the time they've got.”
People like Julie have helped us be there for so many people over the past 40 years. Thank you for supporting us, especially our staff and volunteers. With your help, we are continuing to make a difference to people living with Motor Neurone Disease.
To mark 40 years of MND New South Wales this year, we are highlighting 40 years of stories from our members, staff, volunteers and experts.
To find out more or to make a donation, please visit: [URL]
Julie’s Story
Julie has been working for MND New South Wales for eight years. Before then, she was involved with other programs supporting MND, muscular dystrophy and MS for many years.
A creative at heart, Julie has a fashion background and is a couture dressmaker by trade. Some might say it’s an interesting change of career, but for Julie, her creativity is even more relevant in her role at MND as an Equipment Support Officer.
You see, it’s that same expert eye for detail and fashion that Julie relies on to assess a client’s current situation and source the equipment they need.
From her days of couture pattern making, Julie’s learnt she has a keen eye to “make anything for the body”. That, teamed with her deep interest in helping people, as well as her passion for giving back, means her role at MND is a natural fit for her. It’s the needs of our clients that are the driving force behind Julie’s passion for what she does.
“We can’t help people with MND get better but what we can do is make people comfortable, confident, independent, all those things that we want for ourselves and for people with disabilities.”
Julie’s role at MND is to process referrals that come through the FlexEquip system and assess various equipment needs. She is the main point of contact between clients and health professionals, such as occupational therapists, physiotherapists and speech pathologists.
Without her and the team at MND NSW, many clients would be left to navigate their needs within complex systems all by themselves, without support from experienced staff who can offer recommendations and find the best solutions for each and every client.
“I'm not sure where people would go and what support they would get without MND NSW. It would be a very big struggle if you were to take that away. I don't know where they would get their equipment, whether it be for a year or two years. Because people don't really need the equipment for that long.”
MND is a complex illness and affects everyone differently.
“The large percentage of our members have a rapidly progressing type of MND. From diagnosis to death, it's probably 1-5 years.”
It’s a staggering fact and it’s one that Julie knows well – her own father was diagnosed with MND around 36 years ago. Back then, awareness of the disease was extremely low, especially in regional areas.
“I grew up in Orange, that's where my dad was. I guess to a certain extent, we thought he'd had a stroke, which can still happen today. But diagnostically so many things have changed now.”
And diagnosis is usually only the first hurdle people with motor neurone disease will face.
That’s why support from Julie and her team is so vital. Being able to access the right equipment at the right time can be life-changing for people living with MND.
It’s a challenging role, but every day Julie strives to do her best for her clients and their families.
“Our clients can see that we're doing the best we can to help them with the time they've got.”
People like Julie have helped us be there for so many people over the past 40 years. Thank you for supporting us, especially our staff and volunteers. With your help, we are continuing to make an incredible difference to people living with Motor Neurone Disease.