Becoming a member of MND Queensland is more than signing up - it’s joining a community united in supporting those impacted by Motor Neurone Disease. Whether you’ve been impacted by MND personally or simply passionate about making a difference, membership is a meaningful way to show your support.
Why Become a Member?
Membership connects you to a network of individuals and families facing similar challenges.
MND Queensland members receive access to:
Exclusive Updates: Stay informed with our newsletters, keeping you up to date on the latest in MND research, advocacy, and services.
Support Services: Gain priority access to expert advice, multidisciplinary care, and specialised equipment.
Advocacy Impact: Help amplify the voices of those affected by MND as we work to secure better funding and resources.
Membership is $25 annually and fees directly support our essential services. People with an MND diagnosis receive free membership and their primary carer gets free membership for three years.
Membership is open to everyone. By joining MND Queensland, you’re standing alongside individuals and families impacted by MND and contributing to a future where no one faces this journey alone.
CONTACT & SOCIAL MEDIA
MND Queensland
ABN: 75 990 922 939
Phone: 1800 777 175 or 07 3372 9004
Email: info@mndqld.org.au
Web: www.mndqld.org.au
Street: 1/89 Factory Road, OXLEY QLD 4075
Post: PO Box 470, INALA QLD 4077
Facebook: www.facebook.com/MNDQLD
Instagram: @mndqld
LinkedIn: www.linkedin.com/company/mndqld
YouTube: www.youtube.com/@mndqld
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CONTENTS
As the holiday season draws near, our thoughts often turn to the joy of giving, the warmth of family gatherings, and the comfort of tradition. But for those impacted by MND, this time of year can be bittersweet. It’s a season that may bring cherished moments but also magnifies the challenges they face - challenges that don’t take a break, even for Christmas.
For me, this is not an abstract concern. I’ve seen firsthand how devastating an MND diagnosis can benot only for the person facing it but for their loved ones. I’ve spoken with parents agonising over leaving their children too soon, missing milestones like weddings or the joy of welcoming grandchildren. I’ve sat with families who are grappling with the emotional and financial burden of caregiving while processing the inevitability of loss. And I’ve listened as people share how the grief begins long before death, making each passing day a complex tangle of love, fear, and sorrow. These experiences have left an indelible mark on me. They are why I’m passionate about MND Queensland’s mission to provide the best possible support for individuals and families affected by this devastating disease. While we can’t cure MND - yet - we can and do make a difference in the lives of those who face it.
The Gift of Support
At Christmas, the idea of giving takes on a deeper meaning. For our community, it’s about more than presents under a tree - it’s about giving people living with MND and their families the tools, resources, and support they need to face each day with dignity and hope.
This year, as part of our Christmas Appeal, we’re asking for your help to expand our services. Specifically, we are working to establish an MND-specific psychology service - a much-needed addition to our existing offerings.
We know that the emotional toll of MND is immense. From the moment of diagnosis, the grieving process begins. People with MND and their loved one’s grapple with a future that feels stolen, a rollercoaster of emotions that can include anger, despair, guilt, and, sometimes, hope. The weight of these emotions can be crushing.
While our team offers understanding and practical support, we recognise the urgent need for specialised psychological care. An MND-specific psychology service will provide tailored support to help individuals and their families navigate the unique and complex emotional landscape of this disease. It will be a lifeline for those struggling to cope with the diagnosis, to plan for an uncertain future, and to find moments of peace amid the storm.
A Season of Giving
Christmas is a time when many of us reflect on the gifts we have been given - family, health, and the small joys that make life meaningful. It’s also a time to think about how we can give back.
Your support this Christmas can be transformational. A donation to our appeal is not just a financial contribution; it’s a gift of hope, resilience, and connection for those who need it most. It’s the gift of ensuring that no one in our MND community faces their journey alone.
Every dollar raised brings us closer to making this psychology service a reality, complementing our existing services like equipment loans, care coordination, and specialist Allied Health services. It’s about providing a holistic approach to care that addresses the physical, emotional and psychological needs of those living with MND.
Sharing the Spirit of Christmas
As you plan your own celebrations this year, I encourage you to think about what giving truly means. For families affected by MND, it’s not about material things. It’s about moments: the laughter around the dinner table, the comfort of a shared memory, the reassurance that comes from knowing someone is there to help shoulder the load.
Your generosity can make these moments possible. It can help us provide the support needed to turn despair into hope, isolation into connection, and fear into strength.
A Heartfelt Thank You
To our incredible community - thank you. Your compassion, dedication, and generosity are what make our work possible. Whether you’re a donor, a volunteer, or an advocate, you are part of a movement that brings light to some of life’s darkest moments.
This Christmas let’s come together once again to give the most meaningful gift of all: the gift of support, understanding, and hope for those facing MND.
From everyone at MND Queensland, I wish you and your loved ones a joyful, peaceful, and meaningful holiday season. May your celebrations be filled with love and laughter and may the spirit of giving bring you as much joy as it brings to those who receive it.
Together, let’s make this a Christmas to remember—for all the right reasons.
WITH MND
At MND Queensland, we believe in more than just providing care; we aim to provide holistic support that empowers people living with MND and their families to live their best possible lives. For us, this means addressing the full spectrum of needs that arise with MND, from physical and emotional support to practical and social assistance. This comprehensive approach is central to everything we do and reflects our unwavering commitment to the MND community.
A Comprehensive Range of Services
MND Queensland offers a wide range of services designed to support every aspect of life for people living with MND. These include:
• Health-Focused Support: Our multidisciplinary team of expert health professionals provides personalised care to meet the physical challenges of MND. Services like Physiotherapy help with mobility and manage symptoms, our Occupational Therapists can support you to participate more actively in the community, while our Speech Pathologist supports communication and swallowing needs.
• Practical Support: Living with MND often comes with unique equipment needs. Our Equipment Hire Service ensures people can access essential aids like wheelchairs, hoists, and communication devices quickly and affordably. We also deliver education to people with MND and their loved ones to make life easier; such as our very popular Manual Handling sessions.
• Social and Emotional Support: Our MND Advisors & Support Coordinators provide vital guidance and connection for clients and their families. They offer a “no wrong door” approach; delivering practical advice, helping you identify and put supports in place, helping you navigate the complexities of the NDIS and healthcare systems.
Together, these services ensure that clients receive integrated support tailored to their individual circumstances. Our goal is not only to address immediate needs but to enhance quality of life at every stage of the MND journey.
Feedback from the Community
The results of our 2024 Client and Carer Survey reinforce the impact of this holistic approach. We are thrilled to share that respondents rated MND
Queensland’s services an outstanding 9.52/10. This incredible feedback is a testament to the dedication of our team and the trust our clients and their families place in us.
Survey respondents expressed their appreciation for the compassionate, expert care provided by our multidisciplinary team and highlighted the practical difference that our services make in their daily lives. However, the survey also revealed an area of critical unmet need: access to psychology services.
Bridging the Gap with Psychology Services
Living with MND can take a profound emotional toll - not only on those diagnosed but also on their loved ones. In conversations with many clients and families, many have shared that they are struggling with anxiety, depression, and the emotional weight of living with MND. Access to a psychologist would provide vital support, helping people navigate the mental and emotional challenges of this devastating disease.
In response to this need, MND Queensland has launched a Christmas Appeal to raise funds for an MND-specific psychology service. Introducing this service would enable us to take our holistic approach to care even further, ensuring emotional well-being is prioritised alongside physical and practical support. This would truly help us in being able to deliver a holistic approach to MND support!
Together, We Can Make a Difference
At MND Queensland, we understand that supporting people with MND means looking at the bigger picture. A holistic approach is about ensuring no one faces this journey alone, and every aspect of their care is considered.
Pictured: Alliied Health Assistant, Helen (left) with OT, Tara setting out on their road trip to Gladstone earlier this year.
From physiotherapy to education, equipment to advice, and now, hopefully, psychology services, we’re committed to providing wraparound care that meets the diverse and evolving needs of our community.
This holiday season, we invite you to help us make this vision a reality. Every donation to our Christmas Appeal brings us closer to funding a psychologist, enabling us to offer even greater care to those who need it most.
Thank you for your continued support of MND Queensland and for being part of a community that believes in hope, compassion, and care.
Together, we can ensure that no one living with MND is left without the support they need to face tomorrow.
Pictured: Client, Rob along with our Allied Health Assistant, Helen and Speech Pathologist, Nicole at the Apple Store trialling equipment
LIVING WITH MND - STELLA’S STORY
Stella is 61 and lives in Cairns with her husband, Kevin. She’s a mum to four children and a grandmother to three including Leo who is three years old.
She said “It is important to note how valuable my time with Leo is as his mother passed away suddenly when he was 10 weeks old and I have been helping care for him and my grief stricken son since then.”
Stella noticed a slight lisp in March last year and she had no idea it was the beginning of a journey that would change her life.
Her tongue felt swollen, her speech was slightly slurred, and she was experiencing involuntary gasps of breath. A video message to her brother in the UK prompted an urgent reply: seek medical advice. By the time her GP could see her, the temporary drooping of her mouth had passed, but Stella knew something was wrong. After weeks of tests, a neurologist delivered a diagnosis that was as life-altering as it was devastating: motor neurone disease.
“On first diagnosis, I was in shock,” Stella recalls. “These things happen to other people, not me. How could I have a terminal disease? I felt fine apart from my speech problems. Surely the diagnosis was a mistake.”
The tears and fear followed quickly, particularly as she grappled with how to break the news to her children. Stella wanted to understand the disease and how it would progress. While her neurologist provided some information, it was MND Queensland that truly stepped in to help Stella regain a sense of control over her life.
“The value of MND Queensland is vastly underrated,” Stella says. “They have taken control against this disease, giving me some say in my life again and greatly reducing the emotional stress.”
MND has brought a series of debilitating physical changes to Stella’s life.
“My speech deteriorated quickly from a slight lisp to now only making grunts and sounds. Not even my husband can understand me anymore,” she shares.
Eating has become a challenge, as Stella has lost much of the use of her tongue and often bites her cheeks or tongue. She carefully manages small bites of mushy food, pushing them around her mouth with her fingers.
“I often bite my inside cheeks as my facial muscles
have become lax,” Stella adds. “Drinking is another struggle. I have to sip liquids slowly, or they pool in my throat and choke me.”
Stella’s mobility and physical strength have also declined.
“My walking is becoming difficult. I am slow with small steps and tire easily. My stability is frail, and I’m always nervous in company as I fear being knocked off balance. I’ve already had a few falls,” she explains. “Even sleeping is hard. Depending on my position, I can struggle to breathe.”
Stella has experienced painful cramping spasms, especially in her feet, and an increase in nasal and saliva secretions.
“I can’t lie flat or I start to drown in my own saliva,” she says. “I permanently have a hankie for my runny nose and constant saliva. It’s exhausting.”
“The worst thing to me is the inability to kiss my husband any longer,” she says. “Just a simple sign of our love for each other has been taken away by the loss of facial muscle use.”
For Stella, the emotional toll of MND has been just as profound as the physical symptoms.
“Often, people commented that I looked fine. That they wouldn’t know I had anything wrong except for my speech,” she says. This visual judgment made it hard for some medical professionals to take her seriously initially, leaving Stella to advocate for herself despite her declining ability to speak.
“I’ve had to fight to be taken seriously. Some doctors even ignored me and spoke to my husband instead,” Stella recalls. “My husband often had to correct their behaviour.”
Pictured: Stella (left) with Justine, her MND Advisor/Support Coordinator
The emotional strain of being misunderstood and overlooked has been overwhelming. Stella is deeply grateful for the psychological support she receives from Bernie, her psychologist whom has lived-experience with MND.
“The physical changes can be adapted to with assistive technologies, but the emotional changes are hidden and hard to treat,” Stella explains. “Psychology is vital. Bernie has helped me value the time I have left in the best way possible and understand how to support my family as they come to terms with my condition.”
Psychology has also helped Stella process the trauma her family is experiencing.
“My husband is now faced with being on his own in retirement, and all his plans have been forcibly changed,” she says. “The burden is enormous for him, but Bernie has given us both tools to cope.” MND Queensland has been a cornerstone of support for Stella and her family. Her support coordinator, Justine, has helped Stella navigate complex systems like the NDIS, ensuring she has access to essential services and equipment and even connected her with Bernie.
“Justine’s wide-ranging support has been incredible. Without her help, my quality of life would be in total chaos,” Stella says. “The limited time someone with MND has left should be productive and valuable, not just for them but for the family they leave behind.”
Stella appreciates how MND Queensland’s team offers compassion, expertise, and a willingness to learn and adapt to each client’s unique needs. Through their guidance, Stella has found new friend-
ships, assistive technologies, and a sense of community.
“MND Queensland has had my back without ever knowing me,” Stella shares. “They stepped in and gave me a level of support I never knew any society or group could be capable of.”
Stella’s journey highlights the urgency of raising awareness about MND and the need for greater government support. Despite MND Queensland’s vital role, the organisation does not receive regular government funding - a fact that Stella finds appalling.
“This disease is growing in numbers, and the demand for assistance will grow alongside it,” she says. “The government must support services like MND Queensland and fund research into this devastating disease.”
To those who donate to MND Queensland, Stella offers her heartfelt gratitude. “Thank you for being compassionate and empathetic. Your support makes a difference in the lives of people like me,” she says. “I can never fully explain how much it means to my husband and me to have MND Queensland by our side.”
Stella’s story is a powerful reminder of the importance of services provided by MND Queensland. As the organisation works to introduce a new psychology service in 2025, your support is more critical than ever.
This Christmas, give the gift of hope and dignity to Queenslanders living with MND. Donate to MND Queensland’s Christmas Appeal and help fund the services that empower people like Stella to live their remaining time with respect, care, and the best quality of life possible.
To donate, visit www.mndqld.org.au/campaign/90/ christmas2024 or call us at 07 3372 9004. Your generosity makes a world of difference.
Pictured: Stella’s family Christmas, 2021
Pictured: Stella with her husband, Kevin in 2019
WALK TO DEFEAT MND TOOWOOMBA
On Sunday, 8 September, Queens Park was alive with energy as around 300 people gathered for the Walk to Defeat MND. With sunny skies and the Botanic Gardens in full bloom ahead of the Carnival of Flowers, it was a perfect day to raise funds and awareness for Motor Neurone Disease.
The event raised an outstanding $30,500, thanks to the incredible efforts of participants, fundraisers, volunteers, and donors. Special mention goes to our walk champions, who led the group in a heartfelt tribute to Brian, making the day even more meaningful.
Community support was strong, with the Lions Club of Toowoomba - Wilsonton Inc. serving up a delicious sausage sizzle and donating $1,000. Amanda from Vanochino Mobile Coffee kept everyone caffeinated, while Kerryanne from Singer DJ Karaoke provided fabulous entertainment. Local leaders, including Mayor Geoff McDonald, Pat Weir MP and Trevor Watts MP, added their voices of support during the event.
A big shout-out to Toowoomba Grammar School, which once again sent a huge team of students and raised vital funds to support those living with MND.
Thank you to everyone who contributed. Your generosity and enthusiasm are making a real difference in the lives of Queenslanders impacted by MND.
HIGH TEA FOR MND: A FABULOUS DAY OF FASHION
On 10 September, over 130 women gathered at the Imperial Hotel on the Gold Coast for the inaugural High Tea for MND. This elegant event raised an impressive $19,000 to support Queenslanders impacted by Motor Neurone Disease.
Guests enjoyed a Spring/Summer fashion parade presented by Unique Trendz Boutique and admired artwork exhibited by acclaimed artist David Hart, who generously donated a piece for auction. Each attendee received a gift bag featuring a fullsize sunscreen from Issada Cosmeceuticals and magazines, thanks to our sponsors.
The highlight of the day was Gayle Sedgman’s inspiring speech. Using voice banking technology, Gayle (pictured on the cover at the event) shared her journey with MND, including how advice from MND Queensland’s Speech Pathologist, Nicole, helped her avert a choking incident while on holiday in Morocco.
Thanks to everyone who attended and supported this event. Together, we’ve made a difference.
We sincerely appreciate the wonderful support we receive from our community. Without it, we wouldn’t be able to provide many of our supports and services. We’d like to acknowledge some recent efforts by our community champions.
Tracey Burke decided to honour her husband, Timothy Burke this year by requesting donations to MND Queensland, rather than gifts for her birthday on Facebook. Friends and loved ones generously donated to Tracey, raising over $1,700! Thank you Tracey, you are an inspiration to us all!
A beautiful fundraiser lead by the Barret children was held in honour of Marty Murf who passed away from MND. A bake sale was held in their street and was greeted with a heart-warming community presence. Handmade bracelets, baked goods, brica-brac and MND Queensland merchandise was sold at the event raising around $1,200 for MND Queensland. Well done and thank you to the Barrett family!
With years of MND walk events up his sleeve as a participant, Gerard spearheaded his own Walk to Defeat MND in Bundaberg on Sunday, 24 November. Around 100 registrants participated and the total money raised reaching around $15,000! Gerard’s event ran like a well-oiled machine, with raffles, a barbeque and massive community support. MND Queensland are so grateful to have such a hard-working and dedicated fundraiser on board –
we are very appreciative of everything Gerard has done to support Queenslanders living with MND.
John Agosta and the Bundaberg Early Holden Club held their annual John Eager Memorial MND fundraiser which raised around $2,500. The event featured a vehicle ‘show and shine’, an ice bucket challenge and of course a sausage sizzle! It looked like a fantastic day. Thank you to John and the team for your ongoing efforts and support!
With the support of the Caloundra Golf Club, Sharyn and Brodie Millers held a fun-filled trivia night, complete with raffles and prizes. They raised approximately $1,200 at this debut event, with hopes to continue the Trivia night regularly.
Around 130 people gathered at Moonbar Moments in Gladstone for the Under the Stars for MND Cocktail Gala organised by a local volunteer committee, Emma, Kellie, Kylie, Melissa and Kylie.. The gala raised $6,700 which was split between MND Research Australia and MND Queensland.
A big thank you to all that contributed!
You can get involved today by emailing events@ mndqld.org.au or calling 07 3372 9004.
November 20th was a highlight for our events calendar when 200 MND supporters and tennis fans joined us for the unforgettable Tennis Legends Breakfast!
We were honoured to have John Alexander OAM and the truly humble Ken Rosewall AM MBE share their incredible and funny stories. Our MC, Steve Titmus, did a fantastic job of keeping the event lively, ensuring everyone had the chance to chat and take photos with the legends.
We were also blessed by the presence of another legend, Frank Sedgman. It was a poignant moment as we remembered his daughter Gayle, who recently passed away from MND. Gayle’s dedication was instrumental in making this event a success.
The enthusiastic and fast-talking Phil Black kept us all on our toes with his auctioneering skills.
Thanks to everyone in the room we had an income of $30,000. Your support means the world to us.
Photo credit Alan Fortunato.
When did you commence working at MND Queensland and what attracted you to work with us?
I started with MND Queensland in August 2023. I was in a transition point in my career and wanted a new challenge and saw this advertised and was keen to know more. I have no personal connection with MND but after some research about MND Queensland and learning more about MND via the website, I really wanted to help make a difference and bring more awareness.
Can you please tell our readers a little about your role at MND Queensland?
I am the Volunteer Manager at MND Queensland based at our head office in Oxley, I manage all our volunteers and volunteer programs throughout Queensland. I help to spread the mission of MND Queensland and recruit volunteers for our Volunteer Army that help support all of those impacted by MND throughout the state.
I create meaningful volunteering opportunities through many of our volunteer programs such as our Peer Support Program – social visits, telecare check ins, lawn care services (over 65’s non NDIS clients), the Legacy Program (formerly known as Life Stories), equipment delivery volunteers, admin and office support at our head office, event volunteers, and many other volunteering opportunities. In my role I have opportunities to meet many client’s to connect with volunteers, I also enjoy engaging in the community to help bring more awareness about MND and about our volunteering opportunities supporting the MND community.
What do you enjoy most about working at MND Queensland?
I really enjoy the opportunity to help make a difference in the lives of those impacted by MND. The wonderful team I work with on a daily basis that support and provides services for all impacted by MND. I love the people who I have met on this journey as Volunteer Manager that have offered up their time and dedication to the cause to help make a difference. Without them I wouldn’t be able to do the job I am doing.
Did you know much about Motor Neurone Disease before you started working at MND Queensland and what are the biggest things you’ve learnt about MND since working here?
I did not know much about MND prior to starting at MND Queensland, but probably like many others, I only knew of some information through Stephen Hawking. But since I have been with MND Queensland now for over 14 months I have learnt so much more and one of the big things I have learnt is that when someone is diagnosed, on average another 14 people surrounding them are impacted by their diagnosis.
I just want to bring more awareness in my every day work and to share with anyone who will listen. It is now a cause that has had a deep affect on me since coming to MND Queensland and probably will stay
with me even after.
You’ve built up our volunteer program and introduced several new volunteer services that assist people with MND and their families. Can you tell us about some of the volunteer programs and how they benefit people? All our volunteer programs have a direct benefit for those impacted by MND. As mentioned earlier we have our Peer Support Program with volunteering opportunities as social support volunteers. These volunteers spend time with clients and helps them to feel connected and have other interactions with people outside of their network. This creates meaningful engagement and mutual benefit to the volunteer and client and their families. Other roles in the Peer Support Program include – telecare so volunteers make calls to clients that may live remote areas to check in or have a chat or via online virtually. Our program for our over 65s/non-NDIS clients – Lawn care services, where volunteers may help with basic lawn care, mowing domestic areas, watering gardens or weeding.
What do you see as the benefits for volunteers to get involved in supporting the MND community? There are so many benefits when a volunteer becomes a part of the MND community. Firstly; they join a group of like minded people wanting to help make a difference, and secondly; they gain valuable connections with other volunteers and with all people that have been impacted by MND so families, carers etc. Thirdly, as a volunteer you see in real time the support you are giving to the clients and families and how meaningful it is. That is just to name a few.
Are you recruiting for volunteers? How can people get involved?
We are always recruiting especially in regional areas throughout Queensland. You can jump on our website to enquire, or Seek, Go Volunteer, Freddy Match, and Google MND Queensland volunteering. You can also reach me via the details below.
What do you get up to in your spare time? Do you have any pastimes or hobbies? Can you tell us a bit about Onolina outside the office?
I am a mother of three. I love to be with my children and enjoy eating out, being outdoors, and the beach. I also have two dogs and a cat ,so they keep me busy. I enjoy movies, reading and the theatre.
Is there anything else you’d like to share?
If you are looking for a way to fill your time or wanting to help make a difference in peoples lives or love community then get involved with volunteering! Come join the MND Queensland Volunteer Army and until there is a cure there is care.
For more information contact Onolina by calling 07 3372 9004 or email volunteer@mndqld.org.au or visit www.mndqld.org.au/page/85/volunteer
Are you looking for information, support or a way to advocate and raise funds for Motor Neurone Disease? We have educational workshops, support group meetings and community events for you to get involved in. For more information, to register or RSVP, visit www.mndqld.org.au/events, scan the QR code or call us on 07 3372 9004.
Brisbane North Support Group Sands Social, 50 Keogh St, Sandgate 10:30AM 18 Mar
Brisbane South Support Group Easts Leagues Club, 40 Main Ave, Coorparoo 10:30AM 18 Feb, 15 Apr
Townsville Support Group Von Stieglitz Room, Riverway Library, Thuringowa 10:00AM 29 Jan, 19 Mar
Cairns Support Group Oaks and Vine, 59/63 Esplanade, Cairns 10:30AM 10 Feb, 7 Apr
Bribie Island Support Group Bribie Is. Community Arts Centre, 191 Sunderland Dr 10:30AM - 12PM 6 Feb, 3 Apr
Sunshine Coast Support Group Maroochydore RSL, 105 Memorial Ave 10:30AM - 12PM 16 Jan, 6 Mar, 1 May
Gold Coast Support Group Burleigh Bears Leagues Club, 80 Pacific Ave, Miami 12PM - 2PM 28 Jan, 25 Feb, 25 Mar
MND EDUCATION - FREE
Manual Handling Training MND Queenland, 1/89 Factory Rd, Oxley
Online Newly Diagnosed Workshop Online via Microsoft Teams
Walk to Defeat MND Gold Coast Hollindale Park, Main Beach 9:00AM - 11:30AM Sun 23 Mar Walk to Defeat MND Brisbane New Farm Park 9:00AM
So many in our community have shared stories about why they believe we need an MND-specific psychology service, like Bev who lost her daughter Nicole to MND and now cares for Nicole’s son Samuel.
Your gift will make this important service a reality. Donate now by visiting the website, scanning this code or calling us on 07 3372 9004. www.mndqld.org.au/campaign/90/christmas2024
Send back to: MND Queensland, PO Box 470, INALA QLD 4077. If you are donating by card you can call us on 07 3372 9004 or visit www.mndqld.org.au/donations
Please send me information about leaving a gift in my Will
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