SPRING 2022 ISSUE the cornflower MND QUEENSLAND NEWSLETTER
MiNDAUS is a partnership of Australian MND researchers, clinicians and organisations, which aims to develop a nationally coordinated and patient centred approach to MND research, care and policy development.
A key component of the partnership is the MiNDAUS Patient Registry. The Registry is a clinical database that collects MND patient data, including:
• Demographics
• Diagnosis data
• Treatment type
• Changes in functional capacity
• Complications related to disease progression
• The impact of new treatments and interventions for MND.
Joining the Registry also makes it easier for people with MND to take part in clinical trials and the Registry database will hopefully attract more clinical trials to Australia.
Through collecting and analysing patient data, we can work towards a better understanding of MND, including its causes and pathways to new treatments.
Benefits of the Registry include:
• Allows patients to keep track of healthcare information related to their MND care
• Offers people living with MND the option of sharing data with MND researchers so they can better understand the disease and ultimately develop effective treatments
• Easier access to clinical trials for people with MND. The Registry database should also attract more overseas clinical trials to Australia.
Everyone diagnosed with MND in Australia is encouraged to participate in the Registry. There are no extra tests, procedures or treatments involved.
To register visit: https://registry.mindaus.org/mnd/ register
MND QUEENSLAND
ABN: 75 990 922 939 Address: 3372 www.mndaq.org.au/donations. You can also above. is our 40th anniversary and we’re planning events to mark 40 years of MND community, support, services, fundraising, and advocacy. How will you get involved? Why not plan your own fundraiser?
2 RESEARCH NEWS - MINDAUS PATIENT REGISTRY LAUNCHED
Street
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
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 You can make a donation by credit card by calling 07 3372 9004 or at
post a cheque or money order (made out to MND Queensland) to the postal address
CONTACT DETAILS & SOCIAL MEDIA 2023
research
FROM THE CEO’S DESK WITH STACEY THORPE
I am sitting at my desk on a Thursday afternoon, with a very short deadline to write my message for the Spring Newsletter. I haven’t left it to the last minute because I haven’t got anything to say but actually because I have so much I want to tell you, I don’t know where to start or how I can possibly fit it all in!
Right now, the last of our Drink Tea for MND guests are leaving. It was an unusual morning here as we had nearly the whole team in the office helping get ready for today’s event. Usually, most of our Services staff are out visiting clients or at their desks talking on the phone but today everyone was milling around awaiting the arrival of our guests. Firstly, for our first in person support group here in our Hello Mobility Therapy and Learning Centre, where we successfully combined face to face conversations with others joining us online. This was followed by us welcoming a variety of clients, carers, health professionals and service providers to connect over tea, coffee and some delicious food (thanks again Sandy for the amazing sausage rolls!) and then onto a Showcase of the full range of MND expert, multi disciplinary services that we now offer.
These events take a lot of work to organise but seeing our community come together and connect, laugh and share ideas makes it worth every second. And I really hope that’s what every individual who organises their own community fundraiser feels. These last few months we have been blown away by the number and variety of fundraisers that have been organised. We are in awe of the generosity of every person that gives of their time and energy to organise a community fundraiser and the photos shared show that they are all as much fun as the events I get to attend. I hope that the reward each of those individuals gets from bringing a community together, connecting likeminded people and raising awareness and funds for a very important cause, more than makes up for all that hard work.
However, each and every one of you also deserves our gratitude and so I want to say a personal thank you to each of you.
Mick Scholer, your ‘Moranbah to Mackay ride for MND’ was a fantastic example of a community coming together for a great cause, as well as an incredible physical feat for each and every one of the 15 riders. 215km on a bike is a tough challenge and I hope you all recovered quickly!
Everyone at the Caboolture Snakes Rugby Union Club, I’m sorry the result in the game wasn’t what you’d hoped but glad to see it didn’t dampen your spirits for the evening event and it certainly didn’t stop everyone digging deep with their jersey bids!
Rachell Rogers, the Phil Rogers Golf Day was a wonderful memorial to your beloved husband. I know you have been planning it for a long time and that, despite the weather, it was a day thoroughly enjoyed by all who attended. Can’t wait to see how next year goes!
The Rotary Club of Wynnum and Manly for inviting us to speak about our work at the dinner held in honour of your former President Ken Evans, who sadly passed away from MND earlier this year.
Tom Cossins, the youngest of these community fundraisers who smashed his goal for the Ice Bucket Challenge held at his school. There aren’t many people who are as
community minded as you at your age. I know you follow in the footsteps of both your Mum, Michelle, and older brother Ethan in holding events and raising money for MND in memory of your Grandfather, Greg. I’m sure he be proud to know what you are all doing in his memory.
Bec Chippendale, a former hairdresser for bravely shaving her head to raise money and awareness. The new look is fabulous!
Annual events held again by the Thuringowa Bowls Club in Townsville and the Ipswich Eagles.
Bev Krafft hosted a Drink Tea for MND party in the regional town, Thangool and had 30 people gathered together to raise funds and awareness.
A game day was organised by the Boyne Island Tannum Sands football club in memory of Matt Downey.
Sisters Leisa and Nicole paid tribute to their late Dad by holding a live music fundraiser to benefit both MND Queensland and MND Victoria.
SFH Designs held a fabulous ‘Bubbles and Brushes’ event in New Farm.
McLai Pipes and Drums continue to busk and bring joy with their Scottish sounds and have now raised over $6,000!
Lastly, I also want to thank the 17 people who climbed the Story Bridge in honour of loved ones lost, or currently battling MND. Your efforts were an inspiration to the nearly 100 people gathered below for the Blue Cornflower Tribute night.
These events are a humbling reminder of the impact MND has on so many lives. And whilst today I have focused on the organisers of Community fundraisers, my thanks also go to each and every individual that put their hand in their pocket and donated to these events or directly to MND Queensland. We never take your support for granted and I want you to know that your fundraising dollars make a genuine difference in helping us better serve the community. In the time these events have taken place, we have launched a Physiotherapy Service and created another two new roles, each designed to improve the lives of people living with MND.
We have introduced an Allied Health Assistant, Laara Sergeant, whose role is designed to increase our capacity to provide expert MND Allied Health Services; a Sunshine Coast based MND Advisor/Support Coordinator, who will bring MND expert services on the ground to the Sunshine Coast.
As most of you know, we receive no funding from either the State or Federal government and with more that half of Queenslanders with MND over the age of 65 at diagnosis, and therefore having no access to a suitable funding source, we just could not continue to grow to meet the needs of Queensland’s MND Community without our generous supporters.
The words ‘Thank you’ feel incredibly inadequate, but I promise the gratitude is genuine!
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MND INTRODUCES A
MND Queensland is thrilled to announce that we've launched a Physiotherapy Service that will support people living with Motor Neurone Disease.
Physiotherapy benefits people with MND in several ways including maintaining/improving muscles not affected by MND and maintaining flexibility in those muscles that are, along with preventing joint stiffness and more
Our MND specific Physiotherapist will be able to assist with:
• Managing loss of muscle tone loss and reduced coordination to reduce the incidence of falls
• Support functional mobility to maximise the capacity to perform activities essential to daily living
• Client specific mobility, balance and strength programs
• Pain therapeutic massage, stretching joint range of motion exercises
•
• training
• Carer
It’s thanks to the support of our community that we are able to introduce new services like our Physiotherapy Service to benefit people with an MND diagnosis. Thank you to everyone who
donates, sponsors or hosts a community fundraiser for making the Physiotherapy Service possible.
Our CEO, Stacey Thorpe said ‘MND Queensland continues to grow to meet the needs of Queensland’s MND community through providing MND specific services such as our new Physiotherapy Service. I look forward to seeing the positive benefits that this new Service will bring to the people with MND that we work with.’
To find our more or make a booking call us on 1800 777 175 (07 3372 9004) email info@mndaq.org.au or visit www.mndaq.org.au/page/114/ physiotherapy
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management via
and
Equipment prescription and modification
Manual handling education and
support/education
QUEENSLAND
PHYSIOTHERAPY SERVICE
MORANBAH TO MACKAY RIDE FOR MND RAISES OVER $34,000
On Saturday 23 August, 15 cyclists took on the 215KM ride from the mining town of Moranbah to the city of Mackay in just one day. This is the second time this incredible community-organised event has happened thanks to the determination of Michael Scholer and the support of a number of local businesses, and clubs. It shows how something can come from a small idea and hobby, and turn into an event that can go on to help so many living with MND.
Pre event, the riders encouraged their local community and business networks to sponsor their ride with donations going towards supporting Queenslanders living with MND reach vital specialist care through the support services provided by MND Queensland.
A sunrise start saw the riders begin their trek along the Downs Highway, past trucks and up hills, before arriving in Mackay just before sunset. Cries of happiness (to get off their bike seats) as well as the completion of the physical challenge were met by the incredible appreciation for the awareness raised for this horrible disease that has impacted the lives of some of the riders.
A special thanks goes to the two Platinum Sponsors,
provide multidisciplinary care and support for better outcomes for Queenslanders and their families.
The efforts of the other event sponsors are also immensely appreciated, thank you to our Bronze Sponsors Tri ActiV8, David Brown Santasalo, Muscle Garden Health & Fitness Centre, Forge Engineering and the event sponsors Civeo Australia, Corry Cycles, Strategic Media Partners and Deanne Woods Photography. It makes a big difference when the community dig deep to provide an incredible event, and every bit of help, whether it was catering, a venue for the finish line, photos on the day and promotion of the event has all gone towards increasing awareness of MND and supporting around 400 Queenslanders each year.
This incredible event raised over $34,000 that will help to make a positive difference in the lives of Queenslanders impacted by MND, all from the spark of a small idea and the courage to do more.
Are you inspired? Does your local sports club or group want to hold an event and challenge of your own? 2023
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JOHN HAS BEEN LIVING WITH MND FOR 26 YEARS
John Dinon is possibly the longest surviving person with Motor Neurone Disease in Australia! He’s 86 years old and has been living with MND for 26 years. We recently caught up with John and his wife Johanna to have a chat about his remarkable MND journey.
The couple have been married for almost 62 years and have two children and two grandchildren. They moved to Queensland from South Australia in 1976 for a better education and opportunities for their children. They currently live in a retirement community on the Sunshine Coast.
John had quite a variety of careers in his time including butcher, barman, meter fitter, production supervisor, farmer and milkman to name a few. Johanna saw her parents retirement plans disrupted by illness so she urged John to retire early. He retired at 55 and they enjoyed travelling around Australia (taking up the odd job here and there) in a Mercedes bus that John masterfully converted into a motorhome himself.
He’d been experiencing some slurred speech since 1995. This was sometimes mistaken for being drunk, even Johanna thought he’d been drinking at times. Five years into their retirement travels, John was diagnosed with MND on the 27th of February 1997 at the age of 61. They were living on the Gold Coast at the time and when they were given the news of an MND diagnosis their reaction was ‘What the bloody hell is that?’
When asked about their reaction to John’s MND diagnosis Johanna responded ‘Oh it was dreadful! Especially since they told him he only had five to six years to live.’
The diagnosis put an end to their retirement travels and they sold the motorhome and settled on the Sunny Coast.
Their grandchildren were only babies when John was diagnosed and he never thought he’d see them grow up. They’re now in their 20s. One is a paramedic and the other is about to graduate from law school.
One of the impacts of living with MND that John told us is that ‘Because you can’t speak, people think that you’re brain dead.’ Johanna added ‘They treat you like an idiot, it’s sad.’
Johanna is a Life Member of MND Queensland. She got involved with MND Queensland in the late 90s and was Treasurer of the former Nambour MND Support Group. She and the other volunteer committee members raised many thousands of dollars to buy
equipment to support people with MND in the region.
Since they live in an aged care facility, they don’t qualify for a Home Care Package and of course, since John is over the age of 65, he doesn’t qualify for the NDIS. They live on the aged pension.
John needs some help to get out of bed, but can get into bed himself and he still showers himself. Although he gets up very early in the morning so that the night staff can assist him, as the day staff are too busy in the morning and he’d need to wait too long for assistance.
Johanna and John have a great outlook on life and share a wicked sense of humour, their knowing glances and smiles at each other during the interview showed an unspoken communication between them. She said, ‘Look, when you’ve been married this long you become mind readers.’
When asked about what John thinks the secret to his long term MND survival is he wrote ‘I don’t like dark places.’ and had a chuckle. John has a positive attitude to life and said ‘You have to!’ Johanna added ‘John always says to me “When I’m gone…” and I say “John you keep promising “when I’m gone” but when are you going?”’ which brought on more laughter.
John has some equipment on loan from MND Queensland and we asked them about the support they’ve received and Johanna said ‘It’s been really good. Really good! No complaints at all.’
The couple are very aware of the support that MND Queensland receives, having raised funds themselves. When asked what they’d say to people who provide support to MND Queensland Johanna responded ’We think it’s very good that they do. It’s great!’
When asked for a closing comment John wrote down ‘Be positive. Never give up.’
Pictured: Johanna and John Dinon
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Jonathan McCowen (or Johnny) is 41 years old and was diagnosed with MND in September 2021 at the age of 40. He has two daughters Darcy (almost three) and Riley (10 months old). He’s been married to Sherie since August 2018. We recently spoke with Sherie about Johnny’s MND diagnosis and the impact it’s had on their family.
Johnny’s an electrical engineer and he accepted a big promotion as a regional director which saw them move to Canada. They’d been living in Vancouver for three years prior to his diagnosis. He noticed a change in his speech in July 2021. His role saw him having many meetings and he was having trouble pronouncing certain words and had to slow down for people to understand him. People were even asking “Is everything alright Johnny, because the way you’re talking is a bit different?” He’d also been seeing a chiropractor and they noticed that his dominant right arm was weaker than his left arm. He saw a GP and they recommended that he go to hospital for tests. Within days of the hospital tests the diagnosis came back as MND.
Sherie was six months pregnant with Riley at the time of diagnosis. She described how the news was delivered, ‘They asked me to sit down. We had Darcy, a very energetic little girl. I remember Johnny sitting in the bed and that look in his eyes that I’ll never forget. They told us they had bad news for us. They tested everything and there were a few test results they were waiting on, but they didn’t think they would change the diagnosis. They told us they think it is ALS I thought “I’m getting sick” and I ran into the bathroom and I threw up and Johnny ran after me. Darcy’s screaming and crying. And Johnny’s like “Don’t worry. We are going to find a way. This is not the end. I’m sure that there’s something we can do” and we came out and Darcy came to me and we were all crying. It was a very tough moment for all of us.’
They had hope and thought that they would try everything available, and sometimes this meant spending many thousands of dollars. They tried alternative treatments. Johnny flew to LA to see a doctor who was doing stem cell treatments. They tried Chinese medicine. They tried homeopathy with a doctor in New York. Nothing worked and Johnny reacted poorly to Riluzole.
MND doesn’t only impact on the person diagnosed, it also affects family and friends. Sherie told us that one of Darcy’s first sentences when she started talking was “Is Daddy OK?”
Johnny and Sherie have a loving relationship, they’ve never even had a fight. Sherie told us that they ‘had lots of plans for our future. For our little family and when this happened I started having grief for the life I had, for the life I was going to have. I went through a lot emotionally. I’m looking at my person, my rock, my best friend gradually deteriorating and moving forward to the end of his life and it’s just so heartbreaking. Also, I’ve got two little girls and I feel the weight on my shoulders that I’ll have to look after them by myself. I’ve been single mumming basically since we got to Australia. Johnny hasn’t been able to do anything. Obviously, if I have to make any decisions, he’s still there, his mind is working 100%, he’s an intelligent person who always gives me the best advice. He’s the person who’s got my back if I need anything. He’s so kind, he’s so caring.’ She added ‘It’s the toughest thing I’ve ever been through.’
Having a new born baby and toddler along with Johnny’s diagnosis wasn’t easy. Sherie told us that they ‘have an army of supporters’ helping out in many ways. While they were in Canada they even had people flying internationally to help out.
They had been planning to move back to Australia at the end of his contract, but Johnny’s diagnosis hastened that process.
Prior to moving back to Australia, one of their friends, Brian was in touch with MND Queensland to start lining up the supports that the family would require.
Sadly, Johnny symptoms have progressed quickly. Initially he was told he might be using a cane in six months, but he was in a wheelchair in that time. Johnny can anymore. He communicates with eye MND Queensland’s Equipment Hire Service.
Along with equipment, MND Queensland has supported Johnny with NDIS pre planning, Support Coordination, Occupational Therapy, Speech Therapy and more. When asked about our support Sherie said ‘First of all, I have to thank Jason. He is so amazing! He is very knowledgeable. He’s very experienced. He’s very caring and he’s been looking after us. We couldn’t ask for more. The whole team are brilliant! There is nothing we’ve asked for that hasn’t been delivered to us in a good manner of time and also the best solution they could provide for us is always there for us. We are living as close as we can to normal life and we couldn’t do it without MND Queensland, for sure. All of the staff, they are very experienced and very knowledgeable It’s important to them to be able to deliver the best they can because they always ask questions, they want to make commitments. Even the solutions they delivered to us last month, they might not work anymore, so they always reach out. We have amazing support from MND Queensland!’
When asked what she’d say to our supporters that make our work possible Sherie said, ‘I’m just so thankful! While we have the NDIS, the funds are limited, there’s just so much we can spend, if we didn’t have the chance to hire equipment we’d be in trouble. If we didn’t have the equipment that helps Johnny... he couldn’t communicate with us at all if he didn’t have that eye gaze equipment which costs over $20,000, so we wouldn’t have access to that. If Johnny couldn’t communicate, how could he let us know how he’s feeling? He can’t even scratch his face. If he’s in pain, he couldn’t let us know. Johnny used a board before he had access to the eye gaze and he told us that he’s “feeling trapped”. All of this equipment is helping someone like Johnny to feel more comfortable in the last months, weeks or years of his life and it’s made everything easier for our whole family as we want the best for him and we don’t want to watch him suffer or be uncomfortable.
With two young daughters, Johnny’s concerned about his family and who is going to provide for them. Their ‘army of supporters’ have been raising funds to help with family’s future with over $700,000 raised so far. He’s creating a memory box filled with letters for each of the girls for special occasions such as birthdays, graduations, weddings Sherie said ‘at nights he sometimes doesn’t want to take his sleeping pills as he wants to write letters for the girls.’
A change that’s come from the diagnosis is Sherie’s outlook on life sharing ‘I try to live in the moment, not to think about the future, only plan for the things I have control over. Don’t think about the things I have no control over, because, what’s the point? I’m going to lose this moment for the future I have no control over?! Time is just so precious for us at this stage.’
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JONATHAN’S MND JOURNEY - FROM CANADA TO AUSTRALIA
GIVING THANKS FOR SOME AMAZING COMMUNITY SUPPORT
Community support means so much to us. We receive no government funding so the support we receive is vital so that we can continue to provide support and services to Queenslanders impacted by MND. We want to share some recent community fundraisers to show our appreciation and give thanks.
Drink Tea for MND is an easy way to get involved and raise funds and awareness. This year all Queensland NDIS National Delivery offices hosted parties and raised awareness and funds raising over $1,600.
On Saturday 23 July the Caboolture Snakes Rugby Union Club had a charity jersey auction to raise funds for MND Queensland and The Black Dog Institute. Our Fundraising, Marketing & Communications Manager, Jason Russo was invited to speak about MND and the work of MND
MND Queensland. She surpassed her goal and raised over $14,000! She also got a fabulous new look from her effort!
Bev Krafft’s sister in law is battling MND, so she decided to
invited us to speak about the positive impact MND Queensland makes in the lives of families affected by an MND diagnosis. At the end of the evening our Fundraising, Marketing & Communications Manger, Jason Russo was surprised with a $5,000 donation from the Club.
Tom Cossins lost his Grandad ,Greg to MND so he decided that he’d increase awareness about MND in his school community and raise funds by doing the Ice Bucket Challenge. Tom raised an amazing $2,105.
Client Services Manager, Lisa McIlroy with NDIS State Manager, Des Lee & Assistant Director, Carol Sefo
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recently their collections tipped over the $6,000 mark!
The Ipswich Eagles held their annual MND Round in June and raised around $1,500.
The Bribie Island Tannum Sands Soccer Club held a fundraiser in memory of Matt Downey and raised over $2,000!
Victoria. Their effort resulted almost $1,500 raised for MND
Shingle Inn City Hall hosted a Devonshire Tea for MND in their heritage store. Radio star Olympia Kwitowski hosted this special event and Kelly Harris, sister of the late Adam Maher (former Cronulla Sharks player who passed from MND) spoke about the impacts of MND. Shingle Inn kindly donated $5 from each Devonshire Tea sold at the event and ran a campaign through the month of August to donate $1 from every pot of tea sold, helping raise over $1,000.
We appreciate all of these fantastic community fundraising efforts and thank you all for helping to provide support and services to Queenslanders impacted by an MND diagnosis.
WALK TO D-FEET MND TOOWOOMBA 2022
The Toowoomba community have been wonderful supporters of MND Queensland over the years and 184 people registered for the Walk to D Feet MND Toowoomba which was held on Sunday 11 September at Queens Park.
We had a slight change in our event location again this year but our participants still got to enjoy the beautiful Queens Park Botanic Gardens in full bloom during the Carnival of Flowers.
Channel Seven News Toowoomba helped to raise awareness about MND and the event with a news story featuring interviews with Mayor Paul Antonio, who lost his wife to MND, and MND Queensland’s CEO, Stacey Thorpe.
Around $13,500 was raised from the walk which will assist to provide support and services to Queenslanders impacted by Motor Neurone Disease.
We thank all of our participants, donors, volunteers, vendors and special guests for attending and helping to make the event a success.
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PHIL ROGERS MEMORIAL GOLF DAY - A HUGE HIT!
After losing her husband Phil to MND in late 2021, Rachell Rogers set out to not only make a difference to the lives of people currently going through their MND journey, but to also honour the memory of her late husband by holding a golf day at the Mount Tamborine Golf Club.
Local community support overflowed to contribute to honour Phil’s memory. The Golf Club waived their hire fee, fabulous prizes were donated by local businesses to help raise funds and around 65 people registered to play.
A special thank you must go to all the generous sponsors of the day, each doing their bit to make the event happen. These sponsors included Platinum Sponsor Serious About Waste, Gold Sponsor Suez, Silver Sponsor TFH Hire Services, and Bronze Sponsor Sightmaster. As well as a special mention to BMI Group for sponsoring the golf carts, and Tamborine Mountain Chamber of Commerce and Industry, Panelfab, Godfrey Hirst Carpets, Tamborine
Mountain Lions Club and Tamborine Mountain Coffee Plantations for sponsoring a hole! This was a community event that had everyone wanting to do their bit to support it.
On the chilly Thursday morning of the event not even the weather could cool the warm spirits of the participants as everyone came together to play (almost) 18 holes of golf and then share lunch and heartfelt speeches about Phil and why continued support is needed to draw awareness to MND.
Fundraising took place via an auction, raffle and donations resulting in over $25,900 raised! An incredible effort that will support those living with MND. Thank you to Rachell and everyone involved in the Phil Rogers Golf Day!
If you would like to hold your own event in memory or tribute of a loved one, please get in touch with Caitlin by emailing events@mndaq.org.au 9004.
STAFF
Our Equipment Hire Service is one of the largest programs we offer at MND Queensland. Leo Grey took on the role of Equipment Officer earlier this year. We recently asked Leo a few questions so that you can get to know more about him and his role.
When did you start working at MND Queensland?
I started working at MND Queensland in December 2021, helping out by doing some deliveries while the usual driver was on leave. I was then assisted for a few months at the beginning of 2022 when help was needed.
Can you please tell our readers a little about your role as Equipment Officer at MND Queensland?
My role is to look after the equipment pool, and look after clients’ equipment needs.
What do you enjoy about working at MND Queensland?
I enjoy the feeling that what I’m doing is contributing to the community. I also enjoy talking to the clients.
Did you know much about Motor Neurone Disease before you started working at MND Queensland?
My knowledge of MND was very limited prior to working for MND Queensland.
What are the biggest things you’ve learnt about Motor Neurone Disease since working at MND Queensland?
That there are different types of MND which can affect people in vastly different ways.
You organise the delivery and pick up of a lot of equipment right across the State? In your time with us, where is the most distant place you’ve organised an equipment delivery to, or pick up from?
The most distant place so far is Mt Isa, it’s hard to get further away than that!
What in your opinion are the major benefits of MND Queensland’s Equipment Hire Service?
The major benefits of our Equipment Hire Service are that the equipment is available now. We keep a decent range of hard to source equipment in stock, so that we can quickly meet the needs of the MND community. It very affordable for our clients saving them the cost of having to purchase this type of equipment outright. Our equipment can make life easier for the person diagnosed helping them stay as mobile and independent as possible and also benefits their carer.
In your time with us, what have you identified as the most in-demand pieces of equipment?
Adjustable electric beds are our most in demand pieces of equipment but cough assist units come in a very close second
Some of our equipment is very expensive. Do you have any idea of the total value of our equipment pool?
We would have over $1M worth of equipment in circulation at the moment.
MND Queensland is a great place to work, and a fantastic cause. It feels good to help people and give back, especially because our clients are all very grateful for what we do!
which can be put back out in to the community. What do you get up to in your spare time? Do you have any pastimes or hobbies?
My hobbies change occasionally, in the past I have been very into remote control cars, Latin dancing, mountain biking, but I have recently taken up learning golf, and try to practice at least once a week.
Is there anything else you’d like to share? Any final thoughts?
MND Queensland is a great place to work, and a fantastic cause. It feels good to help people and give back, especially because our clients are all very grateful for what we do!
Pictured: Leo pictured in our equipment warehouse in Oxley.
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PROFILE: LEO GREY, EQUIPMENT OFFICER
MND IN PARLIAMENT
The MND Associations from all over Australia are continuously advocating so the care support to every person impacted MND.
Recently the Associations came together at a gathering at Parliament House in Canberra to advocate for improved support for the 2,100 people currently living with MND in Australia and those who will be diagnosed in the future.
If you’ve been impacted by MND you are welcome to join in on our free MND Support Group Meetings. You’ll get to meet other people who are experiencing, or have experienced MND so that you can share and learn from one another. Once a month we also have an education session with special guests speaking about topics that relate to Motor Neurone Disease such as care and support or research. As we come out of the pandemic we will be hosting a mix of both online support groups (as we know they are valued by people living in regional Queensland and those who would prefer to join from home) and we’ll also welcome people into our Oxley office. All clients are sent invitations to participate via email. Please make sure we have your current email address on file so that you get your invitations. If you would like an invite or support to join then email supportgroups@mndaq.org.au or call 07 3372 9004.
12 MND SUPPORT GROUP MEETINGS MND QUEENSLAND DONATION FORM - SPRING 2022 NEWSLETTER WHAT’S ON 23 Oct Walk to D-Feet MND Redcliffe, from 9AM at Suttons Beach Park. Register and start fundraising now at www.mndaq.org.au/events/7/walk-dfeet-mnd-redcliffe 26 Nov Rotary Club of Mt Gravatt Christmas Carnival, from 4PM at the Mt Gravatt Showgrounds. 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 My Details: Name: Address: Suburb: State: Postcode: Phone: Email:………………………..………………… Send to: MND Queensland, PO Box 470, INALA QLD 4077 Please send me information about leaving a gift in my Will Or, if you are using a credit card you can call us on 07 3372 9004 or donate online at www.mndaq.org.au/donations Motor Neurone Disease Association of Queensland Incorporated. ABN 75 990 922 939 Tick here and return if you no longer wish to receive newsletters from MND Queensland. Card Number: Card Expiry: CSC: (3 digit CSC on back of card) Cardholder’s Name: Cardholder’s Signature:……………………………………………………………………
Online MND Support Group Meetings - For people with MND and their carers. 11AM every Thursday. Now both online and in person at our Oxley office, 1/89 Factory Rd, Oxley. RSVP to Leigh by emailing supportservices@mndaq.org.au or call 1800 777 175 Facebook MND Community Group - We have a special private Facebook group where you can connect with other people impacted by MND. Apply to join at www.facebook.com/groups/580017429388102
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MND Queensland’s CEO, Stacey Thorpe and President, Diana Melham attended the event (pictured with Sen. Penny Allman Payne) to represent our State. We thank MND Australia and the Hon. Alex Hawke MP, for hosting a great and productive event and look forward to seeing positive outcomes.
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