the cornflower
NEW MND PSYCHOLOGY SERVICE
LIVING WITH MND - JOHN’S STORY
WALK TO DEFEAT MND RECORDS TUMBLE
STAFF PROFILE - MEET MATHEW
HELP SHAPE THE AUSTRALIAN MND CARE GUIDELINE
We are looking for people who have MND and people who are carers, family, friends, researchers, health care professionals and support workers of those who experience MND to shape the first Australian MND Care Guideline. Guidelines help support health care providers (such as doctors, nurses, physiotherapists, etc) to know when and how to provide care to people.
Your input will help us to better understand what information we should include in the new guideline. The survey will take approximately 10 minutes, is anonymous, and open to everyone living with MND, affected by MND, or caring or supporting people living with MND.
Follow the link below for more information and to get started – your voice matters! https://adelaideunisop.syd1.qualtrics.com/ jfe/form/SV_2644gQ0rDXTZ1xs
CONTACT & SOCIAL MEDIA
MND Queensland
ABN: 75 990 922 939
Phone: 1800 777 175 or 07 3372 9004
Email: info@mndqld.org.au
Web: www.mndqld.org.au
Street: 1/89 Factory Road, OXLEY QLD 4075
Post: PO Box 470, INALA QLD 4077
Facebook: www.facebook.com/MNDQLD
Instagram: @mndqld
LinkedIn: www.linkedin.com/company/mndqld
YouTube: www.youtube.com/@mndqld
BEYOND THE BLENDER: A COOKBOOK FOR PEOPLE WITH SWALLOWING DIFFICULTIES
Eating should be a joy, not a challenge. That’s why we want to share The Dysphagia Cookbook, created by Griffith University health students to support people living with swallowing difficulties, including those with MND.
The cookbook features a range of safe, nutritious recipes tailored to texture-modified diets, including soft diet, minced and moist diet, and puree diet. It’s a practical, easy-to-follow resource that brings dignity and enjoyment back to mealtimes.
Whether you’re living with MND or caring for someone who is, this guide helps make mealtimes safer, easier, and more enjoyable.
Download the recipe book here: https:// beyondtheblender. wordpress.com/wp-content/ uploads/2018/09/beyond-theblender.pdf
registered provider
These past weeks have seen some of the most powerful and unifying moments in MND Queensland’s history — not only because of the significant milestones we reached, but because of the collective strength and compassion that carried us there.
On Tuesday, May 20, we launched the Parliamentary Friends of MND at Queensland Parliament — a groundbreaking initiative to ensure the needs of Queenslanders living with MND are front and centre in government decision-making.
The response from our community was extraordinary. We reached capacity for registrations within just 48 hours, thanks to the overwhelming enthusiasm of people living with MND, their families and carers. That level of engagement speaks volumes — not only about the importance of this initiative, but about the strength, energy, and unity of the MND community in Queensland.
The event also attracted strong political engagement, with Ministers, Shadow Ministers, and MP’s representing electorates throughout Queensland. Health Minister Tim Nicholls addressed the room with genuine interest and acknowledgement of the need, affirming the importance of this new platform for engagement between government and the MND community. The event would not have been possible without the leadership of Margie Nightingale MP and KerriAnne Dooley MP, the co-chairs of the Parliamentary Friends group, whose bipartisan commitment has helped elevate MND on the policy agenda. Their efforts — along with the overwhelming response from the MND community — made it clear that there is both a need and a desire for meaningful change.
What truly gave the event its heart were the voices of lived experience. Nada, Kevin, and Melinda shared their deeply personal stories, reminding us all that MND is more than a diagnosis — it’s a series of losses, and a daily battle for dignity, support, and understanding.
Our request to government was clear: $1.65 million in recurrent funding to ensure Queenslanders with MND receive the care they deserve. While no firm commitments were made on the day, we left with genuine hope — and the sense that we are being seen, heard, and respected.
Only days later, our community once again came
together in remarkable fashion for the Brisbane Walk to Defeat MND — a record-breaking event in every sense.
This year’s walk achieved unprecedented attendance and fundraising, making it our most successful Brisbane walk to date. The atmosphere was uplifting and filled with purpose, as hundreds of people walked side by side — united by care, compassion, and a shared determination to change the future of MND.
We were also proud to share at the event that your generosity has made it possible for us to recruit a psychologist dedicated to supporting clients and carers. This milestone — long needed and deeply valued — is a direct result of your donations and belief in our mission.
To every person who helped make these events meaningful — by attending, donating, sharing your story, or supporting from afar — thank you. Your support powers every service we provide, every conversation we have with government, and every step we take toward a better future for people living with MND.
In a week filled with big moments, one quiet message reminded us of the profound impact of even the smallest acts of support.
We recently received a note from a client who knew she was in the final days of her life. Rather than asking for anything, she wrote to say thank you — especially to the two volunteers who helped her get out into the community one last time.
Her words were a reminder that what we do matters. That dignity, connection, and care are not luxuries — they are lifelines. And they are made possible by you.
From the halls of Parliament to the paths of Brisbane, this week showed what we can achieve — when we act together, speak clearly, and support each other relentlessly.
Thank you for standing with us. Walking with us. And believing in what’s possible.
We’re not done — but we are stronger than ever.
At MND Queensland, we believe that true care goes beyond physical health — it’s about supporting the whole person. That’s why we are absolutely thrilled to share some exciting news: we’ve welcomed our very first psychologist to the team!
This is a huge milestone for us. For many years, our organisation has proudly offered a wide range of wraparound services designed to support people living with motor neurone disease (MND) and those who care for them. From occupational therapy to equipment solutions, education, advocacy and speech pathology to name just a few — we’ve always aimed to be a one-stop-shop for high-quality, compassionate care. Now, with the addition of psychological support, we’re able to take that even further.
The need for mental health support in the MND community is significant, and we’ve heard that directly from you. In our most recent client survey, access to mental health services came through loud and clear as a priority. We took that feedback to heart — and we acted on it.
Over the coming months, MND Queensland will be rolling out a dedicated psychology program tailored specifically for people living with MND and their loved ones. This new service will include both individual counselling and group therapy options, making it easier for people to get the type of support that feels right for them.
And thanks to the incredible generosity of our donors and supporters, we’re proud to say that these sessions will be offered at a subsidised rate — significantly more affordable than similar services elsewhere. We know that financial pressure can add to the emotional burden, and we’re committed to removing as many barriers as we can.
Mental health matters. Whether you’re adjusting to a diagnosis, navigating the dayto-day changes that MND brings,
or supporting someone you love, it’s completely normal to feel overwhelmed at times. Talking to someone who understands, in a safe and supportive space, can make a real difference — and we want to make sure that help is available to you when you need it.
Of course, like all of our services, we want this new program to be shaped by the people who matter most: you. Co-design is at the heart of how we work. Your lived experience, your feedback, and your ideas are what help us create services that are meaningful, relevant and truly helpful. We’re inviting everyone in our community to share their thoughts on what they’d like to see in this psychology program — and to let us know if you’d be interested in accessing it.
If you have a few minutes, please consider filling out our short survey via this link https://form.jotform.com/251397434925061 or the QR Code below. It’s a simple way to make your voice heard and help us build a service that truly meets your needs.
This is just the beginning of a new chapter for MND Queensland, and we couldn’t be more grateful to take this step forward with you.
Together, we’re stronger.
SHAPING NATIONAL STANDARDS:
MND QUEENSLAND AT THE FOREFRONT OF THE AUSTRALIAN MND GUIDELINES
We’re proud to share that six members of the MND Queensland team are contributing their time, expertise and lived experience to the development of the new Australian MND Guidelines — a landmark project that will shape how care is delivered to people living with motor neurone disease across the country.
These guidelines, funded by FightMND in partnership with the University of Adelaide and alongside clinical experts, researchers and people with MND, aim to create a nationally consistent, evidence-based approach to care. From diagnosis through to symptom management and end-oflife support, they will guide clinicians, service providers, and policymakers in delivering the best possible support to our community.
We’re incredibly honoured to have such strong representation on the various panels, with our team offering expert perspectives across allied health, clinical
care, service design, and consumer advocacy.
The photo captures five of our team members who are involved in this work attending the launch event remotely (Tara, our 6th representative flew to Adelaide to be part of the Guidelines panel) — a powerful visual of MND Queensland’s commitment to evidence-based, community-driven care.
Our involvement in this project reflects the deep knowledge within our team and our ongoing dedication to shaping the future of MND support — not just here in Queensland, but across the nation.
LIVING WITH MND - JOHN’S STORY
At 69, John is no stranger to hard work, passion, and determination. After nearly five decades running a timber business and years exploring the bush in his beloved 4WD, John now faces a new challengeliving with motor neurone disease (MND). But as he says with trademark spirit: “I’ve got this.”
John lives on the Sunshine Coast with his wife, Sue. Together, they’ve built a close-knit family of three children and six grandchildren. “I get along extremely well with all of them,” he says proudly.
For 48 years, John poured his heart into his timber business. “Every piece of timber is different,” he explains. “You watch all the different colours and the grain pattern… and when you put a coating on it and you see it in the houses, it’s not all the same. It just lifts the whole room.” His passion for timber was more than a job, it was an art form.
He was equally passionate about four-wheel driving and camping, and even ran a sideline business taking groups on outback treks, acting as tour guide and catering for the convoy.
Like many others, John’s journey to diagnosis wasn’t straightforward.
Before receiving his official diagnosis on 24 May 2024, John had undergone several surgeries. “In the 12–18 months before my diagnosis, I’d had two knee replacements,” he says. “After my first back surgery, the doctor was so happy with how everything had gone. I told him something wasn’t right. I said, ‘By the way, what the f*ck did you do to me? How come I’ve got no muscle left in here?’” (He rubs between his left thumb and pointer finger.) The doctor believed it was a pinched nerve.
John had further MRIs, which revealed a compressed area in his neck. “He said, ‘If we don’t operate soon, you could quite easily become a paraplegic.’” John underwent surgery to fuse three discs in his neck. But his symptoms persisted. “I said, ‘There’s still nothing here (pointing to his hand again).
It’s not getting better, it’s getting worse.’” Six months later, the doctor agreed it was time to dig deeper and referred him to a neurologist.
“I was sick of MRIs, they had to sedate me because I’m claustrophobic. Finally, I got the appointment with the neurologist. She lay me on the couch and stuck little needles in everywhere, tweaking them until I bucked. She listened to everything. This went on for about 45 minutes to an hour.”
Then came the diagnosis with the neurologist telling him “With all the indications, all the testing that I’ve done, you’ve got motor neurone disease.”
“I said, ‘What the f*ck’s motor neurone disease?’” he recalls bluntly. The diagnosis was a shock. “I went down to my car and sat there for about an hour and a half in tears… ‘Why me?’ ‘What’s going on?’ ‘Why?’ ‘What?’ ‘This shouldn’t be!’ It just took me.”
The first two weeks after diagnosis were incredibly tough. But then came a turning point. “I woke up one night and said, ‘What the f*ck are you doing? You’ve got this. You can’t do anything about it, so we might as well get on, get the family together, and enjoy some outings.’”
Since that moment, John has embraced life with remarkable optimism.
“I had to get rid of my business, and I loved doing what I did,” he says. Now, he focuses on his health - still swimming, going to the gym, and spending time with family. He also enjoys fishing and recently took a trip to Moreton Island with his loved ones. He’s made sure their home is ready for the future: “We’ve got ramps out the back… it’s a nice space for Sue when she’s here on her own, when I’m gone.”
Support from MND Queensland has played
a vital role in his journey. Referred by his neurologist, John connected with Shelley, his MND Advisor and Support Coordinator on the Sunshine Coast, who has helped him navigate services, equipment, and ongoing care. When asked about MND Queensland’s support, John simply says, “They’ve been good.” But his stories show just how deeply he values their role in his life.
From voice banking and online support groups to home visits, volunteer support, and referrals to allied health professionals, MND Queensland has made a meaningful difference.
“I went to the support group meeting that Shelley organised at the RSL club and that was brilliant!” John admits he was hesitant at first. “I thought, I don’t know if I want to see what I’m going to look like. But I went… and you come out feeling a lot better because you are talking to other people who’ve got the same sort of issues.”
John also speaks candidly about the challenges of living with MND as someone over 65 - particularly when it comes to accessing support.
Because he was diagnosed after the age of 65, John is not eligible for the National Disability Insurance Scheme (NDIS). Instead, he receives support through a Level 4 My Aged Care package. But for someone living with a progressive neurological condition like MND, that often falls short.
“Absolute bullshit!” he says of the policy that excludes older Australians from accessing the NDIS and its full suite of benefits. “They just assume that he should have super, he can use that! And not all of us have very much super. I was self-employed, I don’t have a lot of super.” John’s experience highlights just how critical MND Queensland’s services are, particularly for those ineligible for the NDIS. Thanks to the generosity of donors, people like John can still access the specialised care, guidance, and emotional support they need to navigate life with MND.
He’s incredibly grateful to those who support MND Queensland.
“I’d like to thank everyone who donates,” he says. “Because every cent that goes in helps with the care of somebody with MND, and to help make their journey a little bit more comfortable.”
When asked what advice he’d give someone newly diagnosed with MND, John doesn’t hesitate.
“Think positive. Look forward to what you’ve got. Don’t go into a meltdown—or if you do, make it short-term—and enjoy family and friends. Get in touch with MND Queensland for support and help… But think positive and just make the rest really enjoyable and have a good time.”
His final message is one of deep appreciation: “MND Queensland have been fantastic! Anybody with MND is very lucky to have MND Queensland on board.”
Pictured: John and his wife Sue enjoying one of their outback adventures.
Pictured: John with family and friends at the Walk to Defeat MND Brisbane
GOLD COAST KICKS OFF
Our first Walk to Defeat MND for 2025 took place on Sunday, 23 March at the stunning Broadwater Parklands and what a day it was!
Despite facing last-minute challenges after Cyclone Alfred caused significant damage to our usual venue at Hollindale Park, we were incredibly fortunate to receive swift support from the Gold Coast City Council, who helped us relocate to Broadwater Parklands. The new location turned out to be a wonderful setting, filled with vibrant energy, community spirit, and seaside beauty.
We were thrilled to welcome 255 registrants who joined us to walk, roll, and rally in support of Queenslanders living with MND. Together, this passionate community raised over $38,000!
The day featured more than just steps - it was filled with heartfelt moments and joyous celebrations. Attendees enjoyed face painting, snow cones, and a merchandise stall, adding a festive touch to the event. We also handed out special awards to standout participants, while Jacko kept the energy high with great music throughout the morning.
We have walks planned for Cairns, Maroochydore, Bundaberg, Toowoomba and Redcliffe. Want a walk in your area? We can help you put on a Walk to Defeat MND event, get in touch with us by calling 07 3372 9004 or email mikhayla.barr@mndqld.org.au
Across Queensland, everyday people are doing extraordinary things to support those impacted by Motor Neurone Disease. From trivia nights to bake sales, birthday fundraisers to music festivals, our incredible community fundraisers are finding creative, heartfelt ways to raise awareness and vital funds for MND Queensland. Their generosity and passion are helping to ensure that individuals and families facing MND continue to receive the care and support they need. Here are just a few of the wonderful efforts we’ve seen recently.
A 70s, 80s, and 90s Music Trivia Night hosted by the incredible Jacko from Bay FM was a huge hit in support of MND Queensland! With over $3,200 raised for MND Queensland it was an amazing team effort—and it looked like everyone had an absolute blast while making a real difference
A massive thank you to Jacko, Bay FM, and everyone who joined in for a night of fun, nostalgia, and community spirit.
Throughout the month of April, the Respiratory Wing at Gold Coast University Hospital hosted an ongoing fundraiser in support of MND Queensland. The team came together to organise a bake sale, a fun scrubs day, and a merchandise table, all in the spirit of raising awareness and support for this important cause.
Thanks to the incredible generosity and enthusiasm of staff, patients, and visitors, the fundraiser raised over $1,600!
This inspiring community effort has sparked plans to make it an annual event, and we’re excited to see it grow even bigger in the years to come.
It is always incredible to see how the friends and families of those affected by MND step up to show their support. On the 15th of March “Music for MND” took place. An event created by Lisa Sturwohld as a
birthday celebration for her Mum, Heather who was diagnosed with MND in May 2024. They were able to raise $4,600, with over 20 different performers and around 250 people in attendance. What an amazing day! We can’t wait to see what this wonderful community does next year.
Have you ever thought of asking for donations to your favourite charity in lieu of birthday gifts? That is exactly what Tony Flood did for his 50th birthday. Through the generous donations of his friends and family, he was able to raise approximately $1,400 for MND Queenland. Happy Birthday Tony!
Thinking about running your own event to support people impacted by Motor Neurone Disease? We’d love to hear from you! Reach out to our Community Fundraising Coordinator, Mikhayla Barr by calling 0449 915 115 or email mikhayla.barr@mndqld. org.au.
What an unforgettable morning we shared at the 2025 Walk to Defeat MND in Brisbane on Sunday 26 May! With over 450 passionate participants coming together under blue skies, the event was a powerful display of solidarity, hope, and determination to make a difference for Queenslanders living with Motor Neurone Disease.
Thanks to the incredible efforts of our walkers, donors, and volunteers, we’re thrilled to announce that over $77,000 has been raised — breaking our previous fundraising record and setting a new benchmark for Brisbane’s Walk! This phenomenal achievement is a testament to the generosity and spirit of our MND community.
Our appreciation goes to the Teneriffe Lions for keeping everyone fed with a sausage sizzle. Thanks also go to Cr Julia Dixon (who spoke on behalf of Hon Tim Nicholls MP, Minister for Health) Cr Vicky Howard who attended and donated to our raffle, and Margie Nightingale MP who also donated to our raffle and helped present awards and raffle prizes.
A special shout-out goes to our superstar fundraisers who raised $1,000 or more and proudly received their superhero capes on the day. Your dedication is truly heroic.
To every single person who walked, donated, or lent a hand — thank you. Your support helps us continue providing essential care and services for those impacted by MND in Queensland. Together, we are walking toward a future free from MND.
When did you join MND Queensland, and what inspired you to work with us?
I started MND Queensland at the beginning of May. I wanted to join because I have an interest and passion in working in health-related psychology and psychologically supporting people with chronic health conditions. I was also inspired to assist in creating a psychology service for MND Queensland.
Tell us about the new Psychology Service –what will it offer and who will it support?
The psychology service is still very much in the early stages of development, however it will broadly include individual therapy sessions for persons living with MND and for their carers. The service will also include a skills-based psychology group for carers, and a separate skills-based psychology group for persons living with MND, who are newly diagnosed. There will also be a staff wellbeing component to the psychology service, however the specifics are still being worked through.
Why do you think psychological support is so important for people living with MND and their families?
Psychological support is imperative to a person experiencing chronic disease, especially a terminal one. Emotions and distress are particularly heightened upon diagnosis, changes in disease, and end stages. Evidence-based psychological knowledge and skills can assist persons with MND and carers in understanding their experience and to manage effectively.
How do you think this new Psychology Service might change the experience of someone navigating an MND diagnosis?
The new psychology service aims to use evidencebased therapeutic strategies to support persons living with MND and their carers. It aims to help in understanding emotions, how to regulate them, process grief, learn coping skills, and improve quality of life, despite the nature of MND. Research has shown, despite progression of disease, quality of life, especially emotionally and values-based living can be maintained.
As the service prepares to launch, what are your hopes for its impact in the months ahead?
I hope that once the service is launched in total, that persons living with MND and carers, can benefit significantly from attending individual psychology sessions and skills-based group sessions, via increased knowledge and coping skills. If the demand is there, which I believe it will be, I hope the service expands with at least another psychologist joining the team to further meet the psychological needs of consumers.
Before joining MND Queensland, did you know much about Motor Neurone Disease? What are some of the biggest insights or lessons you’ve learned?
I had basic knowledge of MND before joining the organisation. I am a big AFL fan and have followed Neale Daniher’s journey over the years. The main lesson I have learned so far, is to screen for cognitive changes in all persons with MND, as up to 50% may experience them. Screening for cognitive changes will be part of individual therapy sessions.
How would you explain the value of the Psychology Service to someone considering supporting it by donating?
Psychological issues are relatively common in general, however they significantly increase in persons with chronic disease, especially terminal disease. A person with MND and their carers, experience a really challenging time gaining a diagnosis, and upon diagnosis, are often psychologically distressed. For both person with MND and carers, their identity changes, relationship roles change, financial stressors incur, which all significantly negatively impact a person’s wellbeing. The psychology service can help them navigate this disease.
Working in this field can be emotionally demanding. How do you take care of your own wellbeing while supporting others?
Through learned experience, I have strong boundaries between my work life and personal life, as it is necessary to switch off in this role. I can recognise when it is time for a break, and I take it. I also enjoy attending yoga classes, running, and meditating to help with stress.
What do you enjoy doing in your spare time? Do you have any hobbies or interests that help you unwind outside of work?
I enjoy watching sport (mostly AFL), going to yoga, reading, running, meditating, anything naturebased, and playing with my dog!
Finally, is there anything else you’d like to share with our readers?
Please share information about the Psychology Service with anyone you believe may be interested, so we can psychologically support as many people as possible who are impacted by MND.
Are you looking for information, support or a way to advocate and raise funds for Motor Neurone Disease? We have educational workshops, support group meetings and community events for you to get involved in. For more information, to register or RSVP, visit www.mndqld.org.au/events, scan the QR code or call us on 07 3372 9004.
Bribie Island Support Group Bribie Is. Community Arts Centre, 191 Sunderland Dr 10:30AM 7 Aug
Brisbane North Support Group Sands Social, 50 Keogh St, Sandgate 10:30AM 22 Jul, 16 Sep
Brisbane South Support Group Easts Leagues Club, 40 Main Ave, Coorparoo 10:30AM 17 Jun, 19 Aug
Bundaberg Support Group Cafe 1928, 6 Mount Perry Rd 10:30AM 1 Jul
Cairns Support Group Oaks and Vine, 59/63 Esplanade, Cairns 10:30AM 11 Aug
Gold Coast Support Group Burleigh Bears Leagues Club, 80 Pacific Ave, Miami 10:00AM 29 Jul, 26 Aug, 30 Sep
Hervey Bay Support Group Hervey Bay Golf Club, Tooth St & Old Maryborough Rd 10:30AM 12 Aug
Online MND Support Group Online, via Microsoft Teams 10:00AM 19 Jun, 17 & 31 Jul, 14 & 28 Aug
Sunshine Coast Support Group Maroochy RSL, 105 Memorial Ave, Maroochydore 10:30AM 3 Jul, 4 Sep
Toowoomba Support Group Picnic Point Cafe - Top of The Range, Rangeville 10:00AM 17 Jun, 12 Aug
Townsville Support Group Von Stieglitz Room, Riverway Library, Thuringowa 10:00AM 30 Jul, 17 Sep
MND EDUCATION
National MND Health Professional Webinar Series Online - Register at https://bit.ly/4hnT3o6 1PM or 2PM 29 Jul, 18 Sep & 20 Nov
Manual Handling Training for Carers MND Queensland Headquarters, Oxley 10:30AM - 2PM 19 Jun, 30 Jul, 11 Sep
Newly Diagnosed Online Workshops Online via Microsoft Teams 10:30AM-12PM 25 Jun, 23 Jul, 27 Aug, 24 Sep
MND Round Lunch Runaway Bay Leagues Club 12:00PM - 3:30PM
Cornflowers & Butterflies - Global MND Day Mt Coot-tha Botanic Gardens 10:00AM - 12:00PM Sat 21 Jun
MND Queensland Annual General Meeting Botanic Gardens Cafe - Mt Coot-tha 12:00PM - 2:00PM Sat 21 Jun
UK Lions Lunch Victoria Park Golf Club 12:00PM - 3:00PM Fri 18 Jul
Walk to Defeat MND Cairns Mackenzie St. Parkland, Esplanade 9:00AM - 12:00PM Sun 27 Jul
Walk to Defeat MND Toowoomba Queens Park 9:00AM - 12:00PM Sun 31 Aug
Cradle Mountains - Inspired Adventures Cradle Mountains, Tasmania - Fri 7 Nov - Mon 10 Nov
Tax Appeal - Give the gift of peace of mind
So many in our community have shared stories about why they believe we need an MND-specific psychology service such as John who featured in our Tax Appeal and inside this edition. Your gift will make this important service a reality. Donate now by visiting the website, scanning this code or calling us on 07 3372 9004. www.mndqld.org.au/campaign/103/tax2025
Send back to: MND Queensland, PO Box 470, INALA QLD 4077. If you are donating by card you can call us on 07 3372 9004 or visit www.mndqld.org.au/donations
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