The Cornflower - Autumn 2022 Edition - MND Queensland's Newsletter

the cornflower

AUTUMN 2022 ISSUE

MND QUEENSLAND NEWSLETTER

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2022 MEMBERSHIP RENEWAL & AGM DATE CLAIMER As a community organisation members are the lifeblood of MND Queensland and your support as a member is vital to us.

Membership renewals fall due at the beginning of each calendar year and we’d like to take this opportunity to remind you that if you haven’t already renewed your membership, it’s now time.

Ordinary membership costs $25 per year, but anyone with an MND diagnosis receives free membership. If you’re not already a member, we encourage you to apply.

Client members receive extra bonuses such as free access to our Life Stories Program and Voice Banking Clinic.

Our 2022 Annual General Meeting is going to be held on Saturday 28 May and current members will receive their notification within the coming months. Be sure to save the date.

Being an official member of MND Queensland gives you the right to vote at our Annual General Meetings and nominate to hold a Board position.

You’ll also automatically receive our newsletters and qualify for discounts for our events too. Being a member adds to our voice when we’re advocating to governments for support for people with Motor Neurone Disease.

You can find more information about renewing or applying for membership on our website at www.mndaq.org.au/page/84/membership or you can give our Office Administrator, Sonia a call on 07 3372 9004.

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

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.

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FROM THE CEO’S DESK - NEW YEAR, NEW BEGINNINGS This is our first Cornflower of the year and my first as the CEO. Given that, it seems only appropriate that I take the opportunity to introduce myself to any of our readers that don’t already know me. I have been with MND Queensland since May 2019 and during that time I have been leading and growing Client Services. They say that if you do something you love, you’ll never work a day in your life and that really reflects how I feel about this organisation and what we do here. I have found a spiritual home with MND Queensland where the community, cause and staff make each day one to look forward to.

The opportunity to lead this organisation into the future is one that I am very grateful for and I have been overwhelmed by the messages of support I have received from the community. It is the views of this community that are most important and I will actively seek opportunities to hear all of your views and ideas for how we can continue to build on the value this organisation brings to people impacted by MND. Meeting individual members of our community and hearing their stories has always been my favourite part of my job and I am determined that the change in my role will not get in the way of that.

We have some big plans for this year and whilst the year may not have started quite how we hoped it would (COVID had other ideas!) there is still plenty of the year left and our community will see that the growth and innovation that have shaped the last couple of years will continue into the future. Already this year, we have launched our Voice Banking Clinic and opened our Therapy Clinic and Learning Centre.

year. New people bring fresh perspectives and new ideas and we always welcome those in our team.

Lisa McIlroy, who has replaced me as the Client Services Manager, is as passionate about our services as the rest of the team and is really driven by quality services that exceed the expectations of our clients and I can’t wait to see the changes she introduces and have every confidence that they will help in our fundamental goal of improving the lives of people impacted by MND.

Whilst we will always be forward focused, I do want to finish with a reflection on our recent past. We said our goodbyes to Ian Landreth, my predecessor and mentor, as he began his well-earned retirement at the end of last year. Anyone that has been involved with MND Queensland for the last few years will know that Ian worked tirelessly to improve this organisation and did so incredibly successfully. He will be very much missed in our office, for his knowledge, experience and expertise more so than his awful jokes. The MND Queensland he left is unrecognizable from the one he joined and I am proud to be given the opportunity to build on his legacy. He may not be coming into the office every day but Ian, like everyone else connected to the organisation, will always be part of our community and we will no doubt continue to see him at our events into the future. Thank you Ian, for everything!

Our members, clients and supporters have been telling us that they are tired of social isolation and want to connect with others in person again and we are determined to create these opportunities, in a COVID safe way, in the form of both events and services. We have a full calendar planned with some Stacey Thorpe, Chief Executive Officer exciting new activities added to those traditional ones that create such a warm and supportive atmosphere that they really do brighten your day. I plan to attend as many as possible and I would love it if you took the time to come and say hello, share with me your stories and your thoughts on what we do well, what we could better and what we don’t currently do that you’d like us to do.

You’ll also see some new faces that have joined our team and we expect more growth throughout the

The MND Queensland team farewell Ian Landreth in Dec 2021

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RUGBY STAR CARL WEBB HELPS LAUNCH VOICE BANKING CLINIC Last year MND Queensland established Australia’s first MND-specific Speech Pathology Service. Expanding on this service, we are now proud to introduce our Voice Banking Clinic which former Origin, Broncos and Cowboys player Carl Webb has helped to promote.

The voice banking process involves recording one’s voice using a voice banking program. Once the voice has been recorded the program cuts the recordings into small pieces (e.g. vowels and consonants) and then stitches them back together to create words and phrases that sound like the person’s natural voice. The recording process can take less than an hour to complete and this is long enough to capture all of the sounds to be able to recreate a synthetic voice that is close to the person’s natural speech. We have partnered with the Acapela Group for this program and are using their 'My Own Voice' software.

The nature of MND means that sadly most people with a diagnosis will experience some level of speech deterioration if not complete loss of speech.

Therefore voice banking is a useful tool that allows a person with MND to capture their own voice and if they lose the ability to speak, they can continue to communicate with the use of technology (e.g. a tablet, phone, eye-gaze device or Neuronode Trilogy) and still sounds like themselves instead of using a robotic voice (think of the late Stephen Hawking) which leads to the loss of the message being conveyed.

Pictured: Carl Webb and MND Queensland’s Speech Pathologist, Salma Charania

in touch with MND Queensland.”

The Voice Banking Clinic has been made possible through generous sponsorship from ALC Training and kind donations from our supporters and we want you to know that we appreciate your support.

You have all helped to create a fantastic service for people impacted by MND. Because of the generous support of our community, we’re currently able to offer voice banking at no cost to our client members. The only cost involved comes when the client is ready to access their synthetic voice to use via technology.

We would also like to thank Carl for lending his celebrity to our cause to help promote this new service and MND Queensland.

It is recommended that people with MND engage with a speech pathologist as soon as possible after diagnosis. In addition to helping you through the voice banking process they can assist with deteriorating speech and swallowing.

To make sure that all Queenlanders with MND can access this innovative service, we’ve also created a mobile voice banking service. We have laptops with the software and headset microphones ready for people with MND to record their voices. This can be We look forward to this service being utilised by our done comfortably in your own home with the community and seeing (and hearing) the benefits assistance of one of our fantastic volunteers. that it will bring.

Rugby league legend and person living with MND, Carl Webb, has helped to promote this new service by participating in a short promotional video. Carl has commenced the process of voice banking himself. He sees the value in capturing your voice while you can as a safeguard should you lose the ability to speak in the future due to the progression of MND. Carl said “If you’ve also been diagnosed with MND I encourage you to investigate voice banking and get

If you would like to learn more about our Voice Banking Clinic please give us a call on 07 3372 9004 or email info@mndaq.org.au.

You can watch the Voice Banking Clinic promotional video using the QR code or at https://youtu.be/dtmRA7VlIx8.

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HELLO MOBILITY THERAPY & LEARNING CENTRE OPENS MND Queensland is excited to launch the Hello Mobility Therapy and Learning Centre!

The Hello Mobility Therapy and Learning Centre at MND Queensland is a room that has been created for consultations with our Occupational Therapists and Speech Pathologist. More than this, it’s also a space to be used for learning opportunities, inperson and virtual support group meetings and more…

Late last year MND Queensland put out the call that we needed donations and sponsorship to create this space to benefit Queenslanders with MND. Hello Mobility were quick to answer the call and made a major donation which, along with generous contributions from our supporters has helped us to create this space.

The donations have enabled us to paint and furnish the room at our Oxley headquarters. We’ve fitted out the room with couches, a tea and coffee station, and stackable chairs and a folding table (neatly tucked away under the stairs) for larger meetings. The generous support we received has also enabled us to set up a state-of-the-art video conferencing system which will allow us to host online support groups and education sessions.

in the room so that clients can visit us to record their voices.

Having a mix of both in-person and online consultations and meetings means that if you prefer to see us in person, you’re welcome into this new space, but if you would prefer not to have to travel to us, then you can connect with us online.

We’re grateful to Hello Mobility as well as all of the individuals who donated to help create this space that will benefit so many people impacted by MND. Thank you.

Connecting with others going through a similar experience and learning from one another is important for people impacted by Motor Neurone Disease, so we aim to have a mix of both in-person and online support group meetings using the new space.

We look forward to welcoming you to this new space either in-person or virtually.

We’ll also be able to provide telehealth consultations to people with an MND diagnosis no matter where you live in Queensland, as long as you have an internet connection and computer, tablet or phone.

Our Voice Banking Clinic also has a dedicated space

You can watch a short video we made to help promote this new space using this QR code or at https://youtu.be/GQ9RBkuWDVU.

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MiNDAUS PARTNERSHIP - GATHERING VITAL MND DATA MND Australia, MND Research Australia and many other organisations are part of the MiNDAUS Partnership. If you’ve been diagnosed with MND we encourage you to register with MiNDAUS which is collecting vital data about people with Motor Neurone Disease for research purposes.

MiNDAUS is a national partnership effort focused on people with MND and their primary carers. MiNDAUS assists clinicians, researchers and healthcare workers to work together to develop evidence-based policies for people impacted by MND.

information gathered will help to improve care for people impacted by MND. The online portal allows people with MND to enter their own details and keep them up-to-date. It also allows people with MND to control who they allow their information to be shared with.

The project is designed to empower the MND community and to increase participation in relation to data collection. This important information will help to inform policy development and implementation which will then translate into practice.

The Partnership have some big goals for the future which include: • Developing an MND app for patients and carers to capture health and wellbeing data and be an educational and advisory resource to assist in better Two aspects of the project have been launched online, care and decision-making. these are the MiNDAUS Patient Registry and The • Unifying and integrating digital platforms for data MiNDAUS Clinical Registry and people impacted by collection across Australia. This will help to identify MND are encouraged to take part in these registries. cohorts for research trials and hopefully attract biotech companies for early-phase clinical The information gathered will help clinicians better development of MND treatments. understand the different forms that MND takes and • Use integrated data to inform policy which will be what might cause these differences. It’s anticipated evidence-based and consumer-driven. This will help that the data will also be useful to help understand how create a uniform national approach to personsafe and effective different medicines and treatments centred, multidisciplinary care, shared care plans might be. and end-of-life directives. It will also help to establish ethical guidelines for national and Another benefit of registering with MiNDAUS is that it international collaborations linking genomic will make participating in other research projects, such research and sharing clinical data. as clinical trials, easier for people with MND to take part in.

To find out more information and to register with MiNDAUS visit www.mindaus.org.

This research partnership will help people with an MND diagnosis have more control of their care options and decision-making. The data will provide a better understanding of the impacts of living with MND. The

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NEW MND QUEENSLAND WEBSITE NOW LIVE Over the last few months we’ve been working on a new website and we’re proud to let you know that it’s now live!

Our website gets a lot of traffic from people seeking information on Motor Neurone Disease, from Allied Health Professionals seeking support for their clients and from our community looking for ways to support people with MND. Our old website did the job for many years, but it was in need of an update. We worked with a company who have also developed new websites for our sister associations in Victoria, South Australia and Western Australia, so they were already familiar with what people with MND, Allied websites that we used to need to use to offer all of Health Professionals and our community of these. supporters were looking for.

Without any promotion it was fantastic to see people An exciting development is that we’ve integrated e- purchasing our merchandise and setting up their commerce into our new website. This means that own fundraising pages in the first days that we you’ll be able to securely pay for membership, launched. register for an event, set up your own fundraising page, buy merchandise, make a donation or We encourage you to have a look at our website at become a regular giving donor all on our own www.mndaq.org.au. website! This reduces the number of third-party

LIFE STORIES PROGRAM - FIRST BOOK COMPLETED MND Queensland introduced the Life Stories Program in 2021 and our volunteers have been enjoying meeting with clients to capture their stories. We’re proud to let you know that our first book has now been produced on the life of our client Ross.

Ross’s wife Melita said “Miriam (our lead volunteer) does all the hard work. We supply the photos. We have a chat. She writes down stories and things that we’d like to include in it. There are photos from when he started work and the places we’ve worked, through to family. In the back of the book are all of our animals. We’ve put a page full of what Miriam called ‘Rossisms’, sayings that Ross came up with, some of them I can’t repeat. Things that the grandkids will be able to remember.”

“We thought we’d include some of his handwriting so that you can see that. We’ve left some blank pages so we can write our own different ideas of things we remember or photos that somebody else has.”

“I’m really glad we did it. I was a bit hesitant at first then I thought ‘what the heck, I’ll have a go’ and it’s been amazing!”

Pictured: Ross with his book

The Life Stories Program is a free service available to our client members. If you’d like more information call 07 3372 9004 or email info@mndaq.org.au.

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NICOLE’S MND JOURNEY - FIND YOUR JOY IN EVERY DAY Nicole is a talented photographer and Mum to a bright and bubbly three-year old boy named Samuel. She also lives with MND and we recently spoke to her about her MND journey.

It’s been a tough decade or so for Nicole. She lost everything in the 2011 floods including her photography equipment. Then her dad who she had been providing care for passed away from Parkinson’s Disease in 2015 and in 2017 her husband Larry died of cancer.

Nicole and Larry had been trying to become parents and after he passed, she was still determined to become a Mum, so Nicole used a sperm donor and had a beautiful baby named Daniel in 2019. Sadly Daniel only lived 76 days before passing away. She tried again and later in 2019 Nicole gave birth to a baby boy named Samuel who is her pride and joy.

After going through the diagnosis process since September 2020 Nicole was given the news of her MND diagnosis in April 2021 while she was on maternity leave.

“I’m a photographer and I can’t do my craft. I can’t do things with my son. I can’t hold his hand properly.”

Despite everything she’s gone through, Nicole’s outlook on life is amazingly positive. She lives by the mantra ‘find your joy in every day’ and she has a ‘glass half full’ attitude. She said, “You never know, tomorrow might be the best day of your life.” She told us that Samuel “is the reason that I get out of bed each day” and if it weren’t for him “after reading about it (MND) I would have walked in front of a bus!

I’m so glad I had him and went through the trouble of having him.”

paraplegic would go through because it would be there one moment and gone the next.”

She went on further to add “It has hugely shaped my life. My Mum is living with me. She’s now here looking after her baby daughter who should be looking after her.”

“I want to get in my car and just drive, but I can’t do that anymore. I’ve lost that independence.”

“My leg would just disappear, so I thought I have to give up my license.”

Initially Nicole’s main symptom was drop foot, “I couldn’t understand why when I was walking, I was slapping my foot down… and I noticed my hand wasn’t opening and closing” she said.

“I’m a photographer and I can’t do my craft. I can’t do things with my son. I can’t hold his hand properly.”

We asked how MND has impacted on her and she responded “Hugely! Everything about my day is MND now. I have to be consciously aware moving…

It’s frustrating! I say to my leg ‘do this’, it doesn’t do it. To me it feels like what a quadriplegic or

When Nicole was finally diagnosed with MND, she was given a list of places to call to find support and on top of that list was MND Queensland so she got in touch with us straight away. She said, “I’m glad I

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got in touch with you guys because you made the process so simple and a lot less stressful.”

With MND Queensland’s help, Nicole’s NDIS package was approved within a day of her application being submitted and her funding came through a week later. Talking about the process she said, “You can’t fathom this mountain of paperwork and you don’t know what to do until someone says ‘we know what we’re doing’ and “It’s great because I don’t holds your hand… it’s been a have to repeat myself so relief.” often. I like to make contact with Jason and he can just

send out that information to MND Queensland’s where it needs to be... I like multidisciplinary care team can how everyone interconnects. take the stress out of accessing It’s just so much easier!” several services as our expert team can work together to streamline service delivery. Nicole has been accessing MND Queensland’s Occupational Therapy Service for home modifications and advice on equipment, she has equipment from our Equipment Hire Service, Pictured: Nicole and her son Samuel her NDIS Support Coordination is handled by us and she’s utilised our new Voice Banking Clinic too. She donations and fundraising makes much of our work said “It’s great because I don’t have to repeat myself possible, Nicole wanted our supporters to know so often. I like to make contact with Jason and he “Keep doing it. Keep supporting MND Queensland. can just send out that information to where it needs That’s why I want to do a fundraiser. Why not get to be... I like how everyone interconnects. It’s just so out there and do something?!” much easier!”

Our MND Advisor/Support Coordinator Jason works closely with Nicole to help her navigate the NDIS and the support services available to her. She said “Jason helps me with setting up my (NDIS) budget.

He helps me saying ‘right, you need podiatry and you need physio and you need this… Ok you need a wheelchair, we’ll have to organise an OT to come out to see what you need.’ He helps coordinate everything.”

Nicole has also joined some of our online support groups and special presentations too. She said “It’s nice to hear someone else going through the same issues. It validated me hearing that someone is going through the same thing, like your arm just disappears or your leg just disappears.”

She thinks that that the wider community needs to be more aware of MND commenting, “I wish we were a lot more educated… Cancers, breast cancer is very out there… I wish there was more education out there because I knew nothing!”

Living with MND comes with many challenges and losing her independence means that Nicole is now reliant on others to drive her around and get out of the house. Speaking about her situation she said “I’d love to go out and do some stuff, create memories, moments and experiences with him (Samuel). It's frustrating, sitting on your hands and waiting for the appropriate time. Frustration is the word I equate with MND. I could say some other things, but that’s the G-rated version.”

We’re grateful to Nicole for sharing her inspirational story with our readers.

When Nicole learned that MND Queensland receives no recurrent government funding she reacted “That is wrong on so many levels! Why on earth?!”

If you have MND and are looking for support, please contact us by calling 07 3372 9004 or email info@mndaq.org.au or visit www.mndaq.org.au.

Hearing that the support of our community through

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EXCITING EVENTS COMING UP IN 2022 - GET INVOLVED! Did you know that you can change the life of a Queenslander diagnosed with MND by attending an event or taking on a challenge?

We raise funds through a variety of events. These funds go towards providing support services such as our MND Advisory Service, equipment, occupational therapy, speech pathology, education, support groups and more! Our activities also make an impact by increasing awareness of Motor Neurone Disease.

Our annual Walk to D-Feet MND events are back in 2022 with a little extra fun! We will be incorporating a small market vibe with local businesses and vendors attending to offer stalls with a variety of food and beverage as well as art, crafts and goods.

Come along to enjoy a Sunday morning in the fresh air. Browse, listen to live music, connect with others impacted by MND in the community and get ready to walk to increase awareness and raise funds in your blue 2022 Walk to D-Feet MND shirts!

bike ride from Moranbah to Mackay which will see 25+ cyclists ride down the range to Mackay. There will be a commemorate golf day for Phil Rogers up at the beautiful Tambourine Mountain Golf Course on Thursday 21 July. Check out more information and how to join these events on our website.

Tea will also be poured again for Drink Tea for MND 2022 so look out for that coming up later this year.

Why not make 2022 the year that you take on a challenge for yourself and increase awareness of We are excited to announce that we will be in Far MND at the same time? Scattered throughout the North Queensland this year too! Our Walk to D-Feet year in locations all around Queensland are MND Cairns on 19 June will mark the beginning of marathons, stomps, walks, triathlons and more.

MND Awareness Week 2022.

When you sign up to these challenges you can nominate to support MND Queensland by raising We will also be hosting the Blue Cornflower Tribute funds through their websites. Be sure to share your Ceremony on Friday 24 June at Kangaroo Point. page with everyone you know to keep them up-toThis is a special evening to gather as a community date with your challenge. As you train, take people and commemorate those living with MND and along for the ride, share your personal story about remember those lost, to share stories and hear from MND, open their eyes to the impacts and raise funds guest speakers. We will be lighting the Story Bridge that will go directly to supporting someone on their and other venues around Brisbane in blue, MND journey. While MND Queensland do not symbolising the strong but delicate blue cornflower. organise these large challenge events, we will be In conjunction with the ceremony we will also be with you every step of the way! We will be your watching as our challengers climb the iconic Story cheer squad, sharing in your training triumphs, Bridge above, for our brand new event MND Climb helping you reach your fundraising goals and seeing in Tribute. This challenge event is open to anyone you finish your race as a champion for MND! six years of age and above, to take on the climb and take their fundraising to new heights! At the top take in the view of the city at twilight and look back at the More events are in the pipeline. You can follow blue twinkling lights of the Tribute Ceremony below updates on the event page or under the ‘get as we aim to shine a light on the impacts together as involved’ tab of the website or by following us on a community. This is sure to be a significant and socials. For any third party or challenge event help, touching event for everyone involved. For more get in touch with our Event and Fundraising details and to register please see our website.

Coordinator, Caitlin Mulcahy by emailing events@mndaq.org.au or calling 07 3372 9004.

We are really happy to be supporting organisers of a few large third-party events this year, including a

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MEET CAITLIN MULCAHY - EVENT & FUNDRAISING COORDINATOR Caitlin started working with MND Queensland in October 2020, so if you’ve attended one of our events since then you’ve probably met her, or at least seen her in her element. We asked Caitlin a few questions so you can get to know a bit more about her and her role at MND Queensland.

actively fundraise, and still coming along to the events even when they change slightly is heart-warming! It is really rewarding when we can come together as a community to do Can you please tell our readers a little about your something, to connect background and your experience of working in with one another and fundraising and events? it’s the icing on the I have always been a bit of an event planner in both my cake when we can personal and professional life, so following this career path out of university was natural to me. I started working raise funds in the meantime. These in events from a venue perspective, planning anything funds do so much to from gala dinners, market sales, fashion shows, weddings, trade-shows, music festivals and even once a improve the lives of monster truck rally! While events can be fun and glittery, I people with MND! found the not-for-profit events gave me purpose and an opportunity to connect with people on another level. I took One of your tasks is to assist the community to put this mentality over to London, where I lived for two years, on their own fundraisers. What advice would you give working just two minutes’ walk from the Tower of London to someone who is thinking about doing their own and Tower Bridge at a beautiful, small charity. Here I truly fundraiser? learnt to slog it for the best possible outcome for those in Just give it a go! Sometimes the most brilliant things come from simple everyday activities. Turning your 5K need. Since returning to Australia I knew I wanted to continue my work in a not-for-profit environment and was run into a month-long challenge, holding a morning tea that opens someone’s eyes to MND, hosting a wine and excited to land myself a role with the wonderful team at cheese night with your friends and raffling some wine off MND Queensland. for fundraising, adding a fundraising element to your weekly rugby match via an auction and BBQ at the What do you enjoy about working at MND clubhouse... Running an event does not have to be a solo Queensland? task either! I see a lot of people worry that it will be too The people! In this position in particular, I get the overwhelming to run your own event, but if you have opportunity to meet and hear stories from so many some friends and family to add to the mix it’s a great time! people. Everyone’s story is always different but just as I will also be there every step of the way (if you want) with heartfelt. I cherish the ability to retell the stories through fundraising tips and equipment to get your dream off the events and awareness raising promotions. It gives me real joy when I speak to someone who has never heard of ground!

MND and see them connect with why we are raising Can you please tell us some of the event highlights awareness. That fills me with true purpose. I am also so on the calendar for 2022? lucky to be a part of such an inspirational and dedicated There is so much to get involved in this year and the list is team. growing! We have our Walk to D-Feet MND events on the What are the biggest things you’ve learnt about Motor Gold Coast, Brisbane, Toowoomba and Redcliffe, and for Neurone Disease since working at MND Queensland? the first time we’re hosting a walk in Cairns on 19 June!

I had only briefly heard of Motor Neurone Disease before We also have the MND Queensland Golf Tournament coming up on 5 May. For Blue Cornflower Day, we’ll be applying for the position. I have since learnt so much about the impacts to not only the person diagnosed but to hosting our tribute ceremony under the Story Bridge (which will be lit in blue) and we’re hosting our brand-new their family and friends too. I have found the shortened challenge event, the MND Climb in Tribute where we’ll lifespan has the biggest impact. While stories can differ, see supporters climb Brisbane’s Story Bridge in tribute of on average someone with MND will pass away only 2.5 someone with MND. years from diagnosis. We are racing time to share their story, to support them through this demanding disease What do you get up to in your spare time? Do you that becomes costly with equipment, therapies and have any pastimes or hobbies? treatments. That is why fundraising and events are so I am also a qualified Pilates instructor, so in my ‘’spare important! They not only offer a chance to do something time’’ on the weekends I teach classes. I also love positive, but they also connect people to a real-life story, spending time with my family and friends, my favourite they educate people of the impacts, and help people thing is trying new restaurants and finding good coffee through a difficult time via access to vital MND-specific spots! support services.

A lot of people may not realise the amount of work that goes into organising large events. What are some of the most challenging and rewarding parts about event organising?

COVID restrictions have made it difficult to deliver events in the past two years. So seeing the support of the community through registering to attend, wanting to

Is there anything else you’d like to share?

I am very lucky to have a job that allows me to give back and connect with so many people. Please feel welcome to approach me at events or email events@mndaq.org.au. I’d love to hear your story and fundraising ideas!

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WHAT’S ON 27 Mar - Walk to D-Feet MND Gold Coast, 9AM, Hollindale Park, Main Beach. Register now at www.mndaq.org.au/events/tickets/2/walk-dfeet-mnd-goldcoast 28-30 Apr - Australian and New Zealand Research Symposium, Brisbane. Visit the website for more information. www.mndaustralia.org.au/research/2022-research-symposium 30 Apr - MND Connect - Research Live Session (part of the Aust & NZ Research Symposium) 5 May - MND Queensland Golf Tournament at Oxley Golf Club. Register online now at www.mndaq.org.au/events/3/mnd-qld-golf 22 May - Walk to D-Feet MND Brisbane, 9AM, New Farm Park. Register now and get sponsored at www.mndaq.org.au/events/tickets/4/walk-dfeet-mnd-brisbane 28 May - MND Queensland’s Annual General Meeting - members will receive notification 19 Jun - Start of MND Awareness Week 2022, why not plan a fundraiser? You can set up a fundraising page at www.mndaq.org.au/my-fundraising/create 21 Jun - Global MND/ALS Awareness Day, fundraise, share stories/posts on social media...

24 Jun - Blue Cornflower Day Tribute Ceremony, see the Story Bridge lit in blue and pay tribute to those battling MND and remember those who we have lost to Motor Neurone Disease.

MND SUPPORT GROUP MEETINGS & SPECIAL PRESENTATIONS If you’ve been impacted by MND you are welcome to join in on our free MND Support Group Meetings.

The meetings sometimes have special guest speakers and you will get to meet other people who are experiencing, or have experienced MND so that you can share and learn from one another.

Due to COVID-19, we’ve introduced regular online support group meetings via Microsoft Teams 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. You can participate in meetings using a computer, laptop, tablet or phone.

Gold Coast MND Support Group - Meets every second month at 1PM at Level 2, Kay House, 35-39 Scarborough St, Southport. RSVP to Leigh on 07 3372 9004.

Monthly Carers’ Support Group Meetings - 1PM every fourth Tuesday. The next meeting is at 1PM on 14 Sep then the following meeting will be at 1PM on 7 December (and then every fourth Tuesday).

Online MND Support Group Meetings - For people with MND. 11AM every Thursday.

MND Queensland Special Presentations - Educational and informative webinars with guest speakers are held monthly on a Thursday at 11AM. The sessions are recorded and can be viewed on our website at www.mndaq.org.au/page/68/mnd-qld and you can also find us on YouTube by searching for MND Queensland.

MND QUEENSLAND DONATION FORM - AUTUMN 2022 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 My Details:

Card Number:

Name:……………………...…………..………

Address:…………………………..……………

Suburb:…………………………..…………….

Card Expiry:

CSC:

(3-digit CSC on back of card)

State:…………….Postcode:……..………….

Phone:………………………..………………..

Cardholder’s Name:………………………………………………………………………..

Email:………………………..………………… Cardholder’s Signature:……………………………………………………………………

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.givenow.com.au/mndaq 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.

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