MND Queensland's The Cornflower Newsletter - Winter 2023 Edition

the cornflower

ANNUAL GENERAL MEETING HELD

Our AGM was held on Saturday 24 May. It was an opportunity to reflect on the Association’s many achievements in 2022 including continued growth and also an opportunity to acknowledge those lost to MND.

We heard stories of two individuals that MND Queensland have supported leading to improved quality of life. MND Research Australia (MNDRA) Executive Director, Gethin Thomas spoke about the research currently underway in Queensland and we were very impressed to learn that Queensland receives 30-50% of MNDRA’s research grants which is recognition of the quality of our researchers and projects they are undertaking.

The Charles Graham award was presented to Maureen Stevenson for her long term and extremely generous financial support with total donations exceeding $100,000.

We said goodbye to Management Committee members Carol Hope and Michelle Prado – both of whom have contributed significantly to MND Queensland in their time on the Committee.

Vice President Elyse Maberly, Secretary Julia Rollston and Ordinary member Keith Malpress

nominated for another two year term and were all appointed unopposed.

We wrapped up with some lovely comments from our members and Vice Patron Robert Henderson about the value of the organisation, acknowledgement of the efforts of the staff and recognition of the quality of the services we provide.

CONTACT DETAILS & SOCIAL MEDIA

MND QUEENSLAND

ABN: 75 990 922 939

Street Address: Unit 1, 89 Factory Rd, OXLEY QLD 4075

Postal Address: PO Box 470, INALA QLD 4077

Web: www.mndaq.org.au

Email: info@mndaq.org.au

Phone: 07 3372 9004

Freecall: 1800 777 175

SOCIAL MEDIA - Please follow us and ‘like’ and share our posts

Facebook: www.facebook.com/MNDAQ

Walk to D-Feet MND: www.facebook.com/Walk2DFeetMNDQLD

Twitter: twitter.com/MNDQueensland

Instagram: @mndQLD

Linked In: www.linkedin.com/company/4869077

YouTube: www.youtube.com/channel/UCf5MA4DA7qGU7BThP9Pg Cg

FEEDBACK AND CONTRIBUTIONS

Please send your feedback or story ideas to fundraising@mndaq.org.au.

DONATIONS

Thank You

You can make a donation by credit card by calling 07 3372 9004 or at www.mndaq.org.au/donations. You can also post a cheque or money order (made out to MND Queensland) to the postal address above.

Pictured (L-R) - Secretary, Julia Rollston, Charles Graham Award Winner, Maureen Stevenson and President, Diana Melham at the AGM.

FROM THE CEO’S DESK WITH STACEY THORPE

It’s been a huge few weeks at MND Queensland so I am delighted that the timing of this newsletter allows me to fill you in on some of the things that have been happening!

You have probably heard the words ‘MND Queensland is the only State Association not receiving State Government funding’ on numerous occasions. I’m almost certain that I have used those words more than any other sentence as it is an issue that we have been banging the drum over for years and have had very real concerns about the disadvantage this creates for Queenslanders with MND. Well, in May, that changed. The Queensland State Government committed to a $250,000 donation towards the vital work of MND Queensland.

This donation is a very clear endorsement of the vital work MND Queensland does and the model of service we have adopted. That model is the direct delivery of MND expert services through our multidisciplinary team that work exclusively with people with MND. We adopted that model because we know it is best practice and that people with MND live better for longer when they are supported in this way. Knowing that the Queensland Government agree that we are providing the best care for Queenslanders with MND, is extremely rewarding.

We are grateful for this recognition of the needs of Queenslanders with MND, their endorsement of our model of care and the financial contribution that will support our efforts into the future. But we won’t be silent now that we have the donation because the next step is to secure ongoing funding.

From my conversations with both the Premier, Annastacia Palaszczuk, and the Health Minister, Shannon Fentiman, I feel a sense of optimism that MND is on their radar, and we will continue our advocacy efforts to secure that much needed recurrent funding.

The other major development is the result from our recent audit. As a registered provider of NDIS services, MND Queensland’s activities are regulated by the NDIS Quality and Safeguards Commission. Our audit result confirmed that we are meeting all the NDIS practices standards and that we fully comply with the NDIS Code of Conduct.

The auditors highlighted the consistently positive feedback from our clients as the biggest strength of our organisation. This is really gratifying for all of us

here at MND Queensland as we put Queenslanders impacted by MND at the centre of everything we do. I want to share with you some of the quotes from our clients that were included in our audit report.

“I really value their support”, “I have found they are responsive when things are rapidly changing for me and my care needs”, “I couldn’t wish for a better coordinator”, “They’re extremely helpful, I’m really happy with them”.

These are just a small selection of the wonderful things our clients have had to say about us and here is another one I wanted to mention, “I’m not in Brisbane, but they have been a great support remotely”. This one shows that distance does not get in the way of us being able to provide that much needed MND expert care and support but whilst I am very happy that we are able to support Queenslanders throughout the state, we do know that for many people, having someone local that they can speak with face to face is really important. And that is exactly why we already have an MND Advisor on the Gold Coast, why we’ve recently expanded to have a presence on the Sunshine Coast and why we are currently recruiting MND Advisors for Townsville and Cairns.

The last quote I’ll share is “I get all the support I need, and they always deliver on what they say they will do.” This is my favourite as it perfectly sums up what we should be doing and is my commitment to the MND community. MND Queensland will always take the time to understand what our community wants and needs and work tirelessly to find a way to deliver it!

SPEECH THERAPY RESEARCH PROJECT

We recently spoke with Dr Brooke-Mai Whelan, Lecturer in Speech Pathology from the University of Queensland about an upcoming MND research project she will be conducting.

Dr Whelan said the project concept came about because ‘This last year I’ve done a systematic reviewquite a thorough look at the literature of what’s out there, what are speech pathologists currently doing to support people with MND with speech difficulty other than prescribing AAC devices - and there’s really nothing out there at all. They seem to be a group of people who have been put in the “too hard basket”.’

She added ‘There seemed to be a belief years ago that if we intervened with active rehabilitation that it actually makes their dysarthria or speech impairment worse. I’ve even read that it can assist in the further death of motor neurones which is why people have avoided it. However the physiotherapy literature and even animal model literature indicates that certain levels of exercise in MND can actually be beneficial. So this got me thinking about “well how can we create a tailored treatment program that’s obviously not going to cure the problem, we know that it’s a neurodegenerative condition, a rapidly declining one, but perhaps if we actively intervene it might prolong or preserve the use of natural speech for longer.” So that’s my end goal. That’s what I’d really like to be able to do for people with MND, but that’s a long way away.’

Going into more detail about the project Dr Whelan said ‘This research project is almost like the very first step where we’re utilising digital technology, so acoustic analysis, where a computer can analyse different features of speech and give us this hard scientific evidence. These numbers that indicate changes in speech over time and how those digital profiles relate to what people with MND report. So at this point in the disease my speech sounded like “this”, the computer analysed it to look like “this” numerically and these are the changes in my ability to communicate that I’ve experienced. We want to put all of that together to better understand the decline of speech deterioration in this group because I’ve read in the literature, and certainly when I’ve spoken to people with MND, when they know you’re a Speechie, they ask you two questions, “How long is it going to be before I lose my speech?” and “What can I do to stop losing it?” and we can’t answer those questions.’

Our own Speech Pathologist, Dr Salma Charania (currently taking some personal leave back home in Canada) is also involved in the project. We asked Dr Whelan about her relationship with Salma and she responded ‘Salma was a PhD student here and because she was studying Motor Neurone Disease, she would teach into some of my courses on the topic. That’s how we got to know each other. Salma and I

now sit together on an MND collective committee for clinical care. We are currently writing a paper together on respiratory failure in MND and how that impacts on swallowing and speech. We hope to work together for many more years to come, but she’s got to get back to Australia!’

One of the barriers that many people face when wanting to get involved in MND research is their location, as most research projects are located in South-East Queensland, but this project will welcome people from across the State to participate. Dr Whelan told us ‘We do all of the recordings online so that people in rural and remote Queensland can participate if they so choose to and then we look at them over this eight-month period of time. And we see what it looks like on the downhill trajectory and then when we design this treatment obviously we’re hoping to see a reverse pattern of performance where their speech is going to change, or going to plateau rather than see that decline. It’s also an easy study to get involved in.’ Explaining the process for participants a little further, Dr Whelan said ‘there’s not a great deal of participant burden in this particular study. There are many, many time points where we want to collect the data but it’s not really an onerous task for the participants.’

She went on to add ‘All participants in this study will require the ability to still be using their natural speech. So depending on how severe their dysarthria is, or the speech impediment they have, I envisage that each data collection would be between 45 minutes and an hour. The tasks are really simple. It just requires them reading and repeating phrases over and over and we just record them.’

Keep an eye on our social media or speak with your MND Advisor/Support Coordinator about getting involved in this project.

Pictured: Dr Brooke-Mai Whelan

EXCITING QBI MND RESEARCH NEWS

We recently spoke with Ross Maclean Senior Research Fellow and Head, Neurodegeneration Pathobiology Laboratory, Dr Adam Walker, and Post Doctoral Fellow, Dr Wei Luan (Leon) from the Queensland Brain Institute (QBI) at the University of Queensland (UQ) about their exciting research project which could bring us a step closer to viable MND treatments.

In late April Adam’s team at QBI published their research findings in international journals 'Molecular Psychiatry' and 'Cellular and Molecular Life Sciences’. Their study on animal models focussed on a protein called TDP-43 which is found in every cell of the body but plays an important role in the health of motor neurons.

When asked about their initial objectives from the research project Leon said ‘We were interested with firstly how the TDP-43 protein abnormal change induced the cell stress pathway because that's a key pathway we assume that could cause the neuron death and we wanted to see exactly what genes, or biochemical targets were being changed in the neurons that are being affected by TDP-43 changes.’

They ran two research projects looking at how the TDP-43 proteins become dysfunctional in motor neurons. Their study found that diseased versions of the TDP-43 protein can damage healthy versions of the protein which then creates a cycle of protein dysfunction and degeneration over time. They also found that the biochemical pathways which control neuron death are triggered early, even before MND symptoms begin.

This major outcome in learning more about the cause of MND will hopefully allow more research and trials to be conducted on more effective drugs and treatments to slow the progression of MND or even cure it! Dr Walker said that ‘to change the course of the disease we need pharmaceutical drugs that can prevent neuron death and this TDP43 protein dysfunction.’

Adam told us ‘I think the most exciting thing about the project is that we found some changes that happen in the nerves very early on in the disease. So before the mice are developing, any signs of MND - but we know that they will in the future - we can see in the brain and spinal cord of these animals that there are particular biochemical pathways that are activated and that that's what is driving those neurons to then degenerate in the disease. What Leon found is that these particular genes are activated very early in the disease. If we can target some of those with new drugs, then it should be protective. We tried one drug and it didn't actually work. So that was disappointing for us, but also good to know because now we know what not to try. So now we have some other targets that we're following up with after that as well.’

When asked about the future direction of the project Adam told us ‘We're using the knowledge that we have gained to test new drugs targeting the similar biochemical pathways. So we're hopeful that some of those will lead to potential drugs that could in future go into clinical trials.’

Dr Walker’s team consists of 12 team members. He has been researching MND for over 15 years and has a PhD in the biochemistry of MND. Dr Luan has been working with Dr Walker for the last three years and comes from a background of working in the field of psychiatric, and cognitive and behavioural change.

Now that Leon’s paper has been published the team are hopeful that their findings will inform further MND research projects globally. Adam said ‘We've had good feedback from people, not just in Australia, but overseas as well, who are interested in the findings and are using that for their own research now. So it's informing further research from other groups, not just from ours.’

The University of Queensland have more MND researchers than any other university in Australia. With all of the exciting MND research projects and over 100 people working in different labs around UQ it was interesting to hear about the UQ Collective. The Collective of UQ researchers comes together regularly to share information on their projects and collaborate.

This news gives us hope that perhaps the key to unlocking the mystery of MND and possibly even a cure, or at least more effecitive treatments, could be found right here in Queensland.

Pictured (L-R): Dr Wei Luan and Dr Adam Walker at QBI

GLEN’S MND STORY

Glen Martin was manager of Dan Murphy’s in Toowoomba when he got his MND diagnosis in September 2022. He inspired Dan Murphy’s stores across Queensland to put on a week-long fundraiser for MND Queensland in February selling our wristbands and drink coolers, and collecting donations. The week raised over $55,000! We spoke with Glen and his wife Jenny about the campaign and his MND journey so far.

Together since 2015 and married in 2018, Glen had four children before he and Jenny met (two living locally and two living overseas) and Jenny had two children from a previous relationship.

Glen started his career in retail management at the age of 19. It’s a career that saw him live in many places across Australia and even overseas. He worked for Dan Murphy’s, Toowoomba for around 13 years.

It was Christmas 2020, a busy time of year for the liquor trade when Glen first noticed some weakness in his right arm when lifting cartons. He thought it might have been an old football injury. He went to the doctor and scans found that he had some degeneration of two vertebrae in his neck and he had fusion surgery. He returned to work in October 2021 on restricted duties. He thought some things were better, but he still had weakness, so he went back to the doctor after Christmas that year and was told it might still take some time to heal after his surgery. Glen went back to see the doctor in March 2022 and they did some MRIs and found that another vertebrae had deteriorated, so he had another round of surgery to fix that. It was after the second surgery that he started to experience weakness in his left arm. The doctor thought there might be something else so referred Glen to a neurologist. He was meant to return to work in October 2022 but his MND diagnosis in September saw him take an early retirement.

Like many people Glen and Jenny had heard about MND and knew about the Ice Bucket Challenge, but didn’t know much about the disease. Glen said ‘It really hits you! The gravity of it. You sort of know enough about it that it’s not good.’

Glen and Jenny had planned to work for a few more years before retiring and travelling, but Glen’s diagnosis brought their travel plans forward, but now Glen has also had second thoughts on travelling saying ‘Family time at home is more precious... You’ll probably enjoy family time more than your new experiences.’

After his diagnosis Glen’s sister Googled MND and came across MND Queensland’s website and sent him the link. He called us and now utilises many of our services such as NDIS Support Coordination, Speech Therapy, Occupational Therapy, Voice Banking and Physiotherapy, as well as the occasional Support Group and Education Session. Glen said it was ‘Probably the best phone call we made after the

diagnosis.’ He went on further to explain ‘We were stepped through the whole process and that just takes the pressure off Jenny, the kids and me.’ Glen felt relief when contacting Queensland’s MND experts saying, ‘You know everything you really needed to know. When you're sitting here and have got the diagnosis and no idea where to start, what to do?’ Adding further ‘That level of support you know, virtually everything is there and just because I’m in Toowoomba doesn’t mean I never see them because you get home visits and phone calls or Teams.’

Glen’s diagnosis didn’t just come as a shock to him and his family, his Dan Murphy’s teammates were also impacted. His Area Manager, Kristy wanted to know what she could do to support Glen, and his response was ‘I suppose I'm lucky enough to be young enough to get on to the NDIS. Obviously having contact with MND Queensland and to see the plight of the older people as well, they're not so lucky to be able to have the NDIS that will pay for equipment or whatever else. So I just said, “you know, for people with Motor Neurone Disease, if you have it in Queensland, MND Queensland’s where you need to go, to get support and whatever. So if we can raise money to support them, I'd really appreciate it.”’ Which is how the amazing Dan Murphy’s campaign came about!

Glen was amazed by the huge success of the campaign saying ‘It was virtually double what they thought they might have got!’ We asked what his reaction was and he responded, ‘You’re humbled by it.’ Jenny added ‘Because a lot of it was about you!’ Glen went on further to add ‘There’s that genuine support and comradery right across the State. Yeah, it was mind blowing really!’

When asked what they would say to MND Queensland’s supporters, Glen responded ‘For me, it’s about who it helps. All that support goes to MND Queensland. It helps not only me, it helps so many people in the community and their families, so it can’t be underestimated.’ As a final comment Glen added ‘Thank you to everyone that supported the cause. To MND Queensland, a big thank you for the support and help that I’ve received and the good work you do for others.’

Pictured: Glen & Jenny Martin

STATEWIDE DAN MURPHY’S CAMPAIGN RAISES OVER $55,000

MND Queensland was the beneficiary of a hugely successful Statewide campaign that saw 54 Dan Murphy’s stores selling merchandise and collecting donations and raising over $55,000 during a week in February.

The Dan Murphy’s team came together to support one of their own, Glen Martin who was diagnosed with Motor Neurone Disease in September 2022 and couldn’t return to his role as manager of the Toowoomba store.

Glen inspired his Area Manager to speak with all the store managers across Queensland to coordinate a week-long fundraising campaign to raise muchneeded funds for MND Queensland so that we can continue to be there when families impacted by a Motor Neurone Disease diagnosis need us the most.

During a State-wide managers online meeting, Glen spoke with his former colleagues about his MND diagnosis and the support he’d received from MND Queensland to inspire all of the stores to get behind the campaign.

We heard great feedback from our community and saw photos on social media of people wearing our

silicon wristbands all the way up their arm!

The campaign wasn’t just an amazing fundraiser it also helped to raise awareness about MND in the wider community too.

We’re grateful to Dan Murphy’s stores and staff across the State for your fantastic effort.

JOIN THE CORNFLOWER CLUB - MAKE A REGULAR DONATION

MND Queensland are excited to announce that we’ve created The Cornflower Club to acknowledge all of our wonderful monthly donors.

Our regular givers will be receiving their annual thank you card and statement of donations in early July along with a special Cornflower Club pin.

Can you join the Cornflower Club and help us continue to make a positive impact in the lives of Queenslander’s impacted by MND? Sign up now at www.mndaq.org.au/ donations or call us for bank account details so you can set up a monthly direct debit donation.

Pictured: (L-R) Jason Russo, Susie Longman and Stacey Thorpe from MND QLD, Claire Green (DM), Jenny Martin, Kristy Tonks (DM), Glen Martin & Rebecca Gibbons (DM)

Pictured: (L-R) President Diana Melham and CEO Stacey Thorpe proudly wearing their new Cornflower Club pins.

SPOTLIGHT ON MND QUEENSLAND SERVICES

MND Queensland services are at an exciting time for our growth and development and we thought we’d give you an update on what happening in this issue.

We know that the need for expert MND services exists beyond Brisbane and the Gold Coast but without recurrent funding from government MND Queensland has struggled to find specialised staff throughout the state. The sustained growth of our services across Southeast Queensland has proven that our model of support is both successful and sustainable and we can now look to roll out more services across the State.

We are currently advertising for two new MND Advisor/Support Coordinators in Northern Queensland.

Since our last edition of The Cornflower we have welcomed Shalom, our first Occupational Therapist based on the Gold Coast. Shalom has hit the ground running meeting with many clients across Brisbane and the Gold Coast.

Our Allied Health team is continuing to expand with a further two Occupational Therapists to come on board before the end of June. We have recognised the need to add additional OTs to our team for some time now and although it took us a little longer than expected to fill these positions we are confident that our new staff will add value to our team from their varied experiences.

We have also had a new MND Adviosr/Support Coordinator join us on the Sunshine Coast. Penny has been a fantastic addition to our team bringing in her own experiences to benefit our clients. Penny is also quite excited to be involved with MND Queensland with the upcoming Walk to D-feet MND on the Sunshine Coast in August.

Now having Penny on board and having new regional staff in the coming months will add to the capacity of our team giving them more opportunity to

passed with flying colours showing how our systems and processes are up-to-date and that we’re operating under a best practice model.

Our Equipment Service remains in high-demand and our Equipment Repair Service is now open for business for those that are seeking swift, professional repairs of their own personal mobility equipment.

We have also been a recipient of a large donation from the Queensland Government. We see this as an endorsement of our work and the service we are providing to Queensland and our MND community. This is just shows that our evidence-based approach to the support of people with MND is creating real impact.

Pictured: Client Nicole with OT Hannah

THANKS TO OUR FUNDRAISERS FOR A FANTASTIC EFFORT

Community fundraising means a lot to us. Without it we couldn’t provide many of our services and supports. We want to thank some of those that have gone above and beyond for Queensland’s MND community recently.

The MND 24 Golf Connect event was held at Bulimba Golf Club on 24 March. The volunteer organisers wanted to tie the event into the global MND 24 event and decided to challenge themselves, and their participants to run a 24 golfing event. They held a raffle as a part of their

organising another successful Bob Ford Memorial Day fundraiser at Seaforth Bowls Club on 30 April paying tribute to Bob by doing one of the things he loved the most. There were over 60 players and many spectators and the day raised an amazing $5,000!

Lauren told us "We are very pleased with the amount we have raised as it is a lot more than last year. Hopefully each year we can go bigger and better!"

Joanne Ialacci Rahn of the Sovereign Islands and Surrounds Monthly Community Luncheon chose MND Queensland as the charity of choice for the April event. Around 90 women got together for a delicious lunch at Mecca Bah at Hope Island and raised $3,700.

MND Week is coming up (18 June 2023) so if you'd like to do your own fundraiser get in touch with our Events and Fundraising Coordinator, Ibari Hellmer by emailing events@mndaq.org.au call 07 3372 9004 or visit www.mndaq.org.au/page/107/ fundraise.

Pictured: (left) One of the MND 24 Golf Connect organisers, Nick Hando with one of the event sponsors from Neuroflex.

Pictured: Players at the Bob Ford Memorial Day at Seaforth Bowls Club

Pictured: Attendees enjoying the Sovereign Islands and Surrounds Monthly Community Luncheon and raising funds for MND Queensland

WALK TO D-FEET MND EVENTS - BRISBANE & GOLD COAST

Brisbane and the Gold Coast have seen Walk to D-Feet MND events held in recent months. The Brisbane walk had Premier Annastacia Palaszczuk, Health Minister Shannon Fentiman and Grace Grace MP attend. In exciting news the Premier announced a $250,000 donation to MND Queensland during her speech at the Walk to D-Feet MND Brisbane on Sunday 21 May! This significant donation is very much appreciated, but is only a fraction of the funding we need annually to provide our expert, specialised services, so fundraising events will continue to be important for us.

The Brisbane walk saw over 300 participants gather at New Farm Park to walk along the beautiful Brisbane River. Together they raised over $35,000. Federal MP Stephen Bates and local Councillor Vicki Howard also attended.

The Walk to D-Feet Gold Coast was held on Sunday 26 March at Hollindale Park and had over 220 participants. Together this community of MND supporters raised over $21,000 from the event! Gold Coast Mayor, Tom Tate was our special guest at the event.

We’d like to thank our participants, your donors, our vendors and volunteers for making these such great events!

Watch out for more walks coming up on the Sunshine Coast on 6 August, Toowoomba on 10 September and Redcliffe on 22 October. Visit our website for more information or call us on 07 3372 9004.

GOLD COAST BRISBANE

STAFF PROFILE: JASON REED, DIRECTOR OF CARE SERVICES

When did you commence working at MND Queensland and what attracted you to work with us?

I started in February. I’ve been working in the disability industry for the last nine years across different roles and I’d noticed that lots of service providers support all kinds of disabilities and provide all kinds of supports. The difference that attracted me to MND Queensland is that we have one focus, MND! I believe there is a big difference between being good at everything and great at one thing. Our focused support to the MND community really gives the team the opportunity to provide specialised support like no other provider can and the opportunity to be a part of such an organisation is a true gift.

Can you please tell our readers a little about your role as Director of Care Services at MND Queensland?

My role is a challenging but rewarding one. My team consists of three departments – Support Coordinators/MND Advisors, Allied Health and Equipment. Our Allied Health multidisciplinary team consists of Physiotherapy, Speech Therapy, Occupational Therapy and an Allied Health Aassistant. With all these different aspects and people within my team every day presents new challenges but the benefit from working as part of a team with so much varying experience is that we can all support each other. The team really understands there isn’t just one answer to a problem, and we are here as a team to support each other.

What do you enjoy about working at MND Queensland?

MND Queensland is really a special place to work. The environment that has been created within the team here is such a pleasure to be a part of everyday. It’s obvious that this is not just a job to any of our team, everyone works here because they genuinely are invested in the MND community and hope to create positive impact every day.

Did you know much about MND before you started working with us and what are the biggest things you’ve learnt about MND since working here?

Honestly no I didn’t know too much, just general knowledge, so it’s been a steep learning curve for me. But I think that’s the gift of working at MND Queensland, there is so much knowledge within the organisation that I’ve been able to learn so much just from conversations with staff and getting to go and meet some of our clients. I’ve also made a point of attending as many of our online educational sessions as well as our support groups which really gives me an insight into how people with MND are living everyday and how we support them. Of course, just like every other staff member I have completed MND awareness training in my first week, so I had developed foundational knowledge before interacting with our clients.

What do you think are some of the strengths of MND Queensland’s service delivery model?

Like I mentioned earlier I’m a big believer in being great at one thing and that’s really evident here. Our team has a highly developed knowledge of MND which is not available from any other service provider in Queensland. Having this knowledge and then being able to apply it in practice when providing support to our clients is an incredible strength I haven’t seen before from an organisation. The expertise available from MND Queensland is recognised across the State in many forms. We are regularly contacted by allied health professionals across Queensland looking for advice

on how to better support people with MND. The expertise the team shows every day has also been endorsed by the Queensland Government donating directly to our organisation recently. To me this really shows the strength as an organisation but also shows the recognised continued value our organisation provides to Queensland and the MND community. Our services have grown dramatically over the last few years. Can you tell us about what plans are in the pipeline to expand service delivery?

Right now, I’m excited to say we are advertising for two new positions. They are both MND Advisor/Support Coordinator positions in Northern Queensland. For myself, I really understand how challenging it is to live in regional communities and that things aren’t always available the way they might be in a city, so employing staff in key locations across the State is something we will continue to work on to help improve our service. I’m also very excited to see our Allied Health team expanding since I have started. We now have a new OT based on the Gold Coast as well as a further two OTs starting soon which is exciting. The continuing need and growth of our team really shows how vitally important our services are to the MND community. This is just the beginning so watch this space!

You’ve just overseen an NDIS audit process. Can you tell us how that went and what were the key learnings?

This was our mid-term audit, and it was at first quite daunting task within my first two months of starting here. But I’m quite glad to say that the systems and processes already in place meant it was the most relaxed audit preparation I have been a part of, the team really does an amazing job every day and this meant the audit went very smoothly and I am very pleased to report that we received no noncompliance and we really passed with flying colours. To me this is just more evidence that we are truly providing a best practice service every day.

What do you get up to in your spare time? Do you have any pastimes or hobbies?

I’m a proud country boy I grew up in Glen Innes, New South Wales (don’t hold that against me) and moved to the Gold Coast mid-2022. Right now, my hobbies consist of being a dad, I have three kids and a wife, so they take up most of my free time. Luckily our whole family enjoys travelling in our caravan, so whenever the opportunity presents itself we pack up the car and caravan and head off on a new adventure. I grew up playing soccer and hope to put the boots back on again one day, but I really enjoy watching any sport.

Is there anything else you’d like to share?

I’d just like to say thank you to everyone in the MND community. Everyone has really accepted me and I am really enjoying working with such a committed group of people.

WHAT’S ON - GET INVOLVED

18 Jun - MND Awareness Week 2023 starts why not hold a Drink Tea for MND party & raise awareness & funds?

23 Jun - Story Bridge Climb, challenge yourself to climb for MND and take in the city lights at dusk while the bridge is lit in blue for MND Awareness Week. Climb in tribute or in memory of a loved one. Register and fundraise now at www.mndaq.org.au/events/24/climb-4-mnd

23 Jun - Blue Cornflower Day Tribute Ceremony, 5PM-7PM, Brisbane Skytower. More info at www.mndaq.org.au/events/40/bluecornflowertributeceremony23

6 Aug - Walk to D-Feet MND Sunshine Coast, from 9AM at Mooloolaba, Register www.mndaq.org.au/events/36/walk-dfeet-mnd-sunshine-coast

23-25 Aug - Scenic Rim Walk for Care, register at www.inspiredadventures.com.au/event/mnd-scenicrim-2023

10 Sep - Walk to D-Feet MND Toowoomba, from 9AM at Queens Park. Register now and get sponsored at www.mndaq.org.au/events/26/walk-to-d-feet-mnd-toowoomba-2023

23 Sep - 40th Anniversary Gala at Crystalbrook Vincent, Brisbane. Tickets at www.mndaq.org.au/events/29/gala

22 Oct - Walk to D-Feet MND Redcliffe, from 9AM at Suttons Beach. Register at online and start fundraising at www.mndaq.org.au/events/27/walk-dfeet-mnd-redcliffe

MND SUPPORT GROUP MEETINGS & EDUCATION SESSIONS

We welcome people with MND, their family and informal carers to join our MND Support Group Meetings and Education Sessions. In our Support Group Meetings you’ll get to meet other people who are experiencing their own MND journey so that you can share and learn from one another. During our Education Sessions you’ll hear from the MND Queensland team of experts as well as special guests about a range of topics to help people live better with MND. We’re hosting both in person meetings and some are a hybrid of both in person and online. To RSVP, get more information or a Microsoft Teams invite (or support to join online) email supportgroups@mndaq.org.au or call 07 3372 9004. Please refer to our website or social media for exact location details and education topics.

MND QUEENSLAND DONATION FORM - WINTER 2023 NEWSLETTER

I would like to donate: $ (write amount) I’d like to give this amount monthly via my credit card I am paying by: Visa MasterCard Cash Cheque/Money Order (made out to MND Queensland) For direct deposit donation details, please call 07 3372 9004 or email info@mndaq.org.au

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Motor Neurone Disease Association of Queensland Incorporated. ABN 75 990 922 939 Tick here and return if you no longer wish to receive