the cornflower
EDUCATION PROGRAM LAUNCHED
VOICE BANKING
LIVING WITH MND - KELVIN’S STORY
MND QUEENSLAND’S 2024-2026 STRATEGIC PLAN
MND Queensland’s Management Committee recently worked on remodelling our vision and mission statements as well as crafting our new strategic plan which will take us through to 2026.
The new Strategic Plan also outlines our values which include: Excellence; Community; Inclusiveness; Innovation and Integrity.
The plan is broken down into five strategic pillars which are:
• Enhance and expand care and support for clients, their families, friends and carers
• Build and sustain connection and community
• Deliver education, build awareness and provide advocacy
• Promote and support research into care, cause and cure for MND
• Ensure sustainability and enable growth
Our Mission Statement has been streamlined to: Our mission is to ensure access to best practice care and support for every Queenslander impacted by MND and contribute to finding a cure.
The Vision Statement has also been refined to simply be: A world free of Motor Neurone Disease.
Until there is a cure, there is care, and the new Strategic Plan and revised Mission and Vision Statements will be a guide for our work over the next few years.
We’ll be reporting back to our community on our progress as we work towards our strategic goals so look out for news in future editions of The Cornflower.
You can view the Strategic Plan online at www.mndaq.org.au/page/78/strategic-plan.
CONTACT & SOCIAL MEDIA
MND Queensland
ABN: 75 990 922 939
Phone: 1800 777 175 or 07 3372 9004
Email: info@mndaq.org.au
Web: www.mndaq.org.au
Street: 1/89 Factory Road, OXLEY QLD 4075
Post: PO Box 470, INALA QLD 4077
Facebook: www.facebook.com/MNDAQ
Instagram: @mndqld
LinkedIn: www.linkedin.com/company/4869077
YouTube: www.youtube.com.channel
NEW LOOK FOR THE CORNFLOWER
After six years, we thought it was time to freshen up the look of The Cornflower a little.
Our recent member survey showed how strongly our members value our newsletter and we’ll keep you up-to-date with everything happening at MND Queensland in our quarterly bulletin.
As always, if you have any feedback or suggestions for an article, get in touch with us by calling 07 3372 9004 or email info@ mndaq.org.au.
Front Cover -
1 - Strategic Plan
2 - From the CEO’s Desk
3 - Spotlight on Services - Voice Banking
4 - Making a Difference - Volunteer Program
5 - Living with MND - Kelvin’s Story
6 - Kelvin’s Story continued
7 - Membership Renewals & Snag Ya Boss
8 - Education Program Launch
9 - Thanks to our MND Community Heroes
10 - Staff Profile - Meet Susie Longman
Back Cover inc What’s On, Support Groups...
registered provider
Building Community Support: Together We Can Make a Difference
As you will have seen on the previous page, our Management Committee have developed a new three-year strategic plan to cover the period 2024-2026, which includes a revised mission statement and organisational values. This was sent out to all our members earlier in the year and we will keep all our supporters updated on our progress against the plan.
Whilst the plan may be new, the focus very much remains on building community and ensuring people with MND have the support and services they need to maximise quality of life and independence.
In the spirit of building community, 2024 is shaping up to be a big year for events throughout the State. Many of you will have attended one of our traditional events, the Walk to Defeat MND. We will be holding walks at the Gold Coast, Brisbane, Sunshine Coast and Toowoomba again this year but thanks to some incredible members of our community, there will also be walks in Gladstone and Bundaberg.
We started the year with our Mates Move 4 MND fundraiser and this saw individuals and teams throughout the state, plan their challenges to raise funds for our cause. Those taking part were also generous enough to share their ‘why’ with us. The stories behind their motivation to take part. We have shared these stories on our social media pages and I would encourage you to read them if you haven’t already. They are as moving as you would expect and an important reminder of why people impacted by MND need the whole community to get behind them.
As a small organisation, MND Queensland does our best to raise awareness and much needed funds but we rely heavily on support from the community. The people of Gladstone and Bundaberg will be much better informed about the MND cause after those events and we just could not do that without locals taking a lead. We are truly grateful for anyone and everyone that organises an event, gets involved in our
fundraising efforts and helps spread the word in anyway they can.
Our staff often find people asking about the organisation when they are out and about in the community wearing their uniform so even just having MND Queensland branded merchandise in public gets people talking!
As you’ll read further on in this issue our Volunteer Program is really getting into gear and it’s thanks to the wonderful efforts of our community of volunteers that we’re going to be able to do so much more for families impacted by MND across the State.
And this year is a really important year to get MND on the agenda for our state-based politicians. The state election will take place on October 26th and there is no better time to address the inequity that exists for Queenslanders with MND caused by us being the only State MND Association not receiving recurrent funding from our state government. We have some big plans to try to change that this year and hope that we can rely on our community to get behind us. We will reach out to individuals soon to share our plans on how they can get involved but in the meantime, if you are keen to be part of our campaign and willing to share your story of how MND has impacted you, please reach out to me directly on stacey.thorpe@mndaq.org.au or call me at the office on 07 3372 9004.
Together, we can create a future where access to essential care and support is a reality for all Queenslanders. Thank you for your unwavering dedication and support—it is truly the heart of our community.
Our voices are far more than simple transmitters of words: they’re an aspect of our very selves and one of the key identifiers by which our families and friends recognise us. Deborah Cameron, Professor of language and communication at Oxford University described our voice as “the willed and authentic expression of an individual’s true identity.”
As a progressive neurological disorder, MND can rob us of our voices.
Voice Banking can give us our voice back.
The theory is simple enough. By capturing a targeted sample of sounds and words from an individual’s voice in a digital recording, it is possible to build a kind of map of how that voice will behave under various linguistic scenarios. This can be used to create an electronic voice copy that can be used in conjunction with augmented communication technologies (anything from an eye-gaze tracking computer down to a simple iPad or even a smart phone). That individual can then command the machine to speak for them using their own voice.
In effect, voice banking creates a digital backup of a voice and it’s remarkably effective.
MND Queensland has been partnering with Acapela because Acapala’s ‘My Own Voice’ software gets the most out of minimal input as the basic sentences can be recorded in just 30 minutes.
Whilst the software is straightforward, we take the stress out of the process by supporting our clients at every stage. Our trained staff and volunteers manage all aspects of account establishment, software operation and voice recording. They will also coach and guide you during recording sessions to ensure that samples taken will be the best as they can be and viable for subsequent speech synthesis.
Our voice banking service is available from our head office in Oxley and at the homes of clients in SEQ. However, we want EVERY Queenslander to be able to access this service. So we had our clever team look at options as to how we could make it available as a telehealth service deliverable to everyone that has an internet connection using remote IT manangement tools. This would allow Queenslanders in remote and rural areas or otherwise unable easily accessible nor able to travel access a cutting-edge restorative technology.
It turns out we could and so we did. In addition to our face-to-face voice banking, we now provide two levels of telehealth-delivered services.
Remote Voice Banking BYOD (Bring Your Own
Cyra (pictured with her husband, Bob) recently banked her voice and told us “There was a great detal of apprehension about doing the voice banking to start with. We would say to others that people just have to get over the fear of the unknown and do it. Trust the staff who are looking after you as part of the Allied Health team at MND Queensland. You will get a great result with your digital voice if you follow the process early.”
Device) uses a client’s own computer in their own home. We loan them a high-quality audio headset that will connect to their computer. An emailed session link allows our team to connect to the clients’ computer using audio and video augmented remote control. This lets the facilitator manage all aspects of the voice banking recording session, monitoring quality providing coaching and guidance all with zero travel.
The second option is to complete Remote Voice Banking where we send the headset and a loan notebook computer pre-installed with all necessary remote connection tools. All the client need do is to switch it on just before the appointed time and connect it to their WiFi. MND Queensland staff will then remotely connect to the machine and take things from there. This avoids the requirement for the client to respond to emails and click on session invitation links.
We’re now looking at how we could simplify this even further by providing a loan machine with its own built-in internet connectivity. In this scenario, all that would need to happen is for the headset to be connected and for it to be switched on! So if there is anyone out there that can support us with this plan to make the service available to absolutely everyone, we’d love to hear from you!
Having your own voice gives back independence and identity and now every Queenslander living with MND can have it no matter where they live.
If you’d like more information about banking your voice give us a call on 07 3372 9004 or visit our website www.mndaq.org.au/page/112/voice-banking-clinic.
MAKING A DIFFERENCE - MND QUEENSLAND’S VOLUNTEER PROGRAM
At the heart of MND Queensland’s Volunteering Program is a dedicated team of individuals committed to making a difference for all those affected by MND.
It is not just about giving time; it’s about fostering a sense of community and shared purpose. By raising awareness about MND and fostering a culture of compassion and understanding, volunteers become ambassadors for change. Their efforts not only enhance the lives of those directly affected by MND but also contribute to building a more compassionate and supportive society.
One of the program’s key strengths lies in its diversity of volunteer opportunities, allowing individuals to contribute in ways that align with their skills and interests. Whether it’s offering companionship through friendly visits, organising fundraising events, or at HQ through administration, equipment hires, research and resourcing, every volunteer becomes a vital part of the MND Queensland family.
MND Queensland celebrate the achievements of our Volunteers, it is a reminder that even small acts of kindness can create a ripple effect, transforming lives and communities. In the spirit of giving, the program continues to grow, welcoming new volunteers who share the vision of making a difference for those impacted by Motor Neurone Disease.
Some of our volunteer roles include:
• Peer Support Program
• Community Champions
• Research and Resource Volunteers
• Events and Fundraising (Brisbane & Gold Coast)
• Administration (Brisbane only)
• Data entry (Brisbane only)
If you are interested in any of our volunteer programs or opportunities, please visit our website for more information or give us a call on 07 3372 9004 to find out how to get involved and join MND Queensland’s Volunteer Army! www.mndaq.org.au/page/85/volunteer
Kelvin loves nature, motorbikes, travelling as well as a good laugh. He’s ridden around Australia twice on his motorbike and before his MND diagnosis he was a National Parks Ranger for almost 35 years.
In 1987 Kelvin and Libby married and a few years later they started their family with the birth of their daughter Erin and then came their son Seth. They’re now also grandparents to lively young Landon.
Libby describes Kelvin as “honest, charitable and very safety conscious.” She went on to add “He’s never a whinger. What he’s going through, you know, I could say ‘poor me’, but I look at what he’s going through and not complaining and making jokes about it, and making other people feel more comfortable about it.”
When Kelvin started having trouble with fasciculations in his arms and legs he saw his GP and was sent for tests. Kelvin is a childhood cancer survivor and his cancer treatments left him with some ongoing health issues which he’s had to deal with over the years, so they initially thought that the tremors may be caused by some of the medications he was taking. He mentioned to his doctor that his father passed from MND and that’s when they focussed their diagnostics on eliminating everything else before coming to the conclusion in July 2019 that Kelvin too had developed Motor Neurone Disease.
Along with his father, Kelvin has also lost two cousins to MND. Having familial MND in their family is now a concern for Kelvin’s children who are investigating genetic counselling to see if they carry the faulty gene that could lead to them developing MND too.
When asked how living with MND has impacted him, Kelvin said it’s like “taking a little bit of your life every day.” He gets fatigued very easily nowadays and has some swallowing issues. He has one good knuckle which he uses to unlock and operate his mobile phone, but this is becoming increasingly difficult for him too. He misses doing things he used to such as bushwalking, riding his motorbike, servicing cars, household repairs and the things most of us take for granted. Plus the little things like being able to brush and floss his own teeth, putting on his shoes and scratching his own ear that Kelvin misses. ‘Scratching anything or just putting my shoes on. I don’t wear a lot of shoes these days, slip-ons are the only ones I wear.’
Sadly Kelvin’s MND diagnosis means that he had to give up his job and that he’s no longer able to ride his beloved Harley Davidson which sits in the garage, something he’s reluctant to give up. Camping was a passion that Kelvin and Libby shared, but this is something else that he’s had to give up due to his decreasing mobility. Libby was a schoolteacher and had to retire early to become Kelvin’s full-time carer.
They miss camping under the stars, but they have enjoyed a couple of getaways in motels, which has presented it’s own difficulties. Despite all of their checks and assurances that venues are disabled/ wheelchair-friendly they’ve come across issues that have made holidaying tricky too. Kelvin still enjoys getting out of the house though, but as trips away become more difficult, he’s enjoying small things like scooting to the park down the road to enjoy nature.
Kelvin and Libby connected with MND Queensland very early on in their MND journey and told us about how they valued the support of our team. “In the early days, it was help filling out a lot of forms and things. The big one was the NDIS application, so that was a bit of a nightmare for us. I found it really frustrating to be filling out all these forms. So it was much-appreciated, filling out or helping us fill out all these things and give us examples of goals to fill out for the NDIS applications, etc. In later times, helping us understand the process through NDIS. We got plan management stuff as well.” Kelvin said.
Jason Russell is Kelvin’s Support Coordinator at MND Queensland. We asked Kelvin how Jason
works with him and he told us “Jason helps in all sorts of ways. If we’re having difficulties with some things or need something arranged, he’s more than happy to step in and keeps consistently on it.” Libby added “Jason is good, though. He’s often saying, ‘Just let me know what you need and I’m there to help. That’s my job.’ So he’s really good that way.”
They’ve also accessed our Occupational Therapy Service and Kelvin told us that our OTs have helped with “Things like various large modifications to the home, things like that ramp out the back. OT help with sorting out the quotes etc. Then bathroom modifications was another large one. A couple of OTs involved in that… vehicle modifications in between. There were a lot of the littler things too, a lot of wheelchair help.” Kelvin went on further to add that the OTs “Pointed us in direction of some things like modified cutlery, what’s available, what might help, what seems to be a waste of time.”
Kelvin has also accessed our Equipment Service telling us “Equipment hire, quite a lot of it. The Merits (folding wheelchair) originally, then later a power wheelchair. A whole range things … A cough assist machine.”
Voice Banking is another service that Kelvin has accessed and he’s relieved to know his banked voice is there if he needs it.
We asked what they thought about MND Queensland being the only State Association in Australia not to receive any State Government funding and Kelvin said “I think it stinks!” to which Libby agreed. Kelvin added “I think they should be receiving funding, within reason. Any of those bodies that help people with some form of disability, if they’re not-for-profit charities, which you guys are, I’ve got no problem with it.”
Libby also added “They provide a good service, don’t they? Without Jason on our side, we’d be flailing. He does all the groundwork and it’s wonderful.”
They are very aware that MND Queensland is a charity that relies on community support to provide many of our services and their son-in-law Liam (who you’ll read about in this issue) recently did his second online streaming fundraiser for MND Queensland. When asked what they’d say to our supporters Kelvin responded “Thank you very much. There’s the monetary side of things, but it’s also the awareness as well. I know a lot of people, like just
an extended group of friends I know who ride bikes. I mean, there’s got to be well over 100 of them through different areas. I guarantee 95% of them didn’t know anything about MND. Now, a lot of them, they know it now from me. But some others have learned more through people like Liam, too. He explained it on his stream very well.”
When closing the interview, we asked if there was anything else they’d like to add and Kelvin told us “There’s one other thing. Something I believe in is that, unfortunately, I’m going to be remembered by some as the bloke who died of MND. And I just think people put too much weight in how someone went out of the world and not how they lived within it. I’ve never been one to believe in making the great retirement speech because you’ve already been there for umpteen years and if you haven’t said the right things or lived the right things… It’s not about what’s written on your tombstone, it’s about the friends and loved ones you leave behind and hopefully I’ll be remembered as the funny one or the witty one or whatever. The one that bought a smile or whatever. I mean, in there it’ll be ‘he died of MND’, but that’ll just be part of it.”
IS YOUR MEMBERSHIP DUE FOR RENEWAL?
Members are the backbone of our organisation and we wouldn’t exist without our community. Members demonstrate their ongoing support for MND Queensland’s aims and objectives to support families impacted by Motor Neurone Disease. Members also add to our voice when we’re advocating to governments for the best outcomes for people living with MND.
Our membership rules changed in 2023 so that membership renews on the 12-month anniversary of joining, but since we previously updated membership at the beginning of each calendar year, many of our members will be due for renewal now.
You can now renew your membership online on our website. Just use the Online Membership Portal. If you’d prefer to renew over the phone you can also call during business hours on 07 3372 9004.
Did you know that people with an MND diagnosis get free membership? Their nominated informal carer can also get 12 months free sponsored membership too.
Get in touch if you’d like more information about joining MND Queensland as a member or visit www.mndaq.org.au/page/84/membership
SNAG YA BOSS - A TASTY MND FUNDRAISER
We serve up a huge thank you to the businesses who participated in our first Snag Ya Boss campaign and got the boss on the tongs, fired up the barbie, and raised funds for this sizzlingly serious cause. We smashed our goal and raised $13,400.
The concept was simple… host a work BBQ, collect donations and get your boss to match what you raise to support Queensland families impacted by MND.
Businesses across the State got involved, including Sintex, McNab, Raceview Veterinary Surgery, Brendan O’Donnell Fencing Pty Ltd, BBC Digital Australia (Gold Coast), Discount Drug Stores (Gordonvale), Formula Interiors, and Transport and Main Roads Queensland (Toowoomba District Office).
Many creatively took the idea and adapted it to what their workplace does. Raceview Veterinary Surgery was snagged by Amanda, who lost her father, Darryl, to MND. They had a bath and BBQ, where doggies could enjoy a hydro bath while the owners grabbed a tasty feed.
Snag Ya Boss is on again this November, so start warming up your boss now and get it on your calendar.
MND QUEENSLAND LAUNCHES EDUCATION PROGRAM
MND Queensland is excited to launch our Educational Program funded by Fight MND’s generous grant. We are proud to have an additional service for our clients, their families, friends, and carers whereby we deliver free information sessions, practical workshops, and training.
MND Queensland aims to provide wrap-around services for our client and their loved ones. The program has been co-designed by our in-house multidisciplinary team of allied health professionals (physiotherapist, occupational therapists and speech therapist) and MND Advisors and Support Coordinators and feedback from our clients and carers.
We have developed three different workshops to date to meet your needs, with more to follow. These include:
• Newly Diagnosed Information Sessions (face-to-face and online sessions) - An opportunity to learn more about the types of MND, its impacts, common symptoms, symptom management and services and supports available.
• Living Well with MND - A day embracing the importance of holistic care. We will focus on multidisciplinary care, relationships, and mental health.
• Manual Handling Training for Informal Carers. Theory and practical learning experience delivered by our in house Physiotherapist.
For more information about our Educational Program contact our Education Project Lead, Simone Flanderka by calling 07 3372 9004 or email simone.flanderka@mndaq.org.au
Upcoming Educational Workshops
• Living Well - 27 March, 22 May and 17 June
• Newly Diagnosed - 10 April and 24 April, 6 and 20 June
• Manual Handling - 18 April and 14 June
We value the feedback we receive as it provides us with a springboard for continued improvement in our service delivery. Some of our clients and carers that have participated in our education sessions already have said:
“Blown away by the amount of information in the newly diagnosed workshop and how it was put together.”
- Michael
“Highlight for me was the introduction to different support equipment.”
- David
“It stands out the support that is provided to people with MND.”
- Michael
THANKS TO OUR AMAZING MND COMMUNITY HEROES
We want to acknowledge all the wonderful people who have gifted their time to raise awareness and vital funds for Motor Neurone Disease – spreading some much-needed joy in support of our community.
In December, Liam hosted his elFarqo 24-hour Twitch Livestream, raising an incredible $2,375. This is the second time Liam has featured MND Queensland, which has raised $4,065 for people impacted by MND. It is a cause very close to Liam’s heart because his father-in-Law Kelvin (featured in this edition of The Cornflower) has MND. He also wants us to share that he’s so proud everyone came together to make the stream successful!
While most of us were winding down for 2023, Melissa Cooper amped up her training and competed in the GC50 Run Festival. She raised $1,433 because a loved one had recently been diagnosed with MND and wanted more people in our community to be aware of this condition. She earned a fabulous MND Queensland lightweight, breathable running singlet featured in the image, and we already have scores of dedicated #nevergiveup champions signed up for similar events in 2024.
Sanctuary Cove Women’s Golf Club hosted their annual Christmas Lunch and raised $3,085 for Queenslanders impacted by MND. Gayle, a member of the club, was diagnosed with MND in February 2023, and the Club decided to rally in support of their dear friend when fundraising for
the event. As their charity of choice in 2024, they’ll continue to support MND Queensland and raise awareness.
The community at Noyea Riverside Retirement Village ran raffles in late 2023 to raise funds for Motor Neurone Disease. Our Fundraising, Marketing and Communications Manager, Jason Russo was recently invited out to speak to residents about MND and accept a cheque for $2,777.
CEO of Your Wealth Corp, Jace Cosgrove lost a favourite uncle to MND. He has never forgotten the impact of watching his uncle deteriorate and eventually pass away about 20 years ago. When Jace had the opportunity to choose a charity to support for his Golf Day he could not go past MND Queensland. Held at Hope Island Golf Club - a full field of colleagues, clients and mates including former NRL Star Ben Hannant and Roosters Assistant Coach Justin Holbrook hit the course. Amazing auction prizes included a round of golf at The Grange with Cam Smith and a surfboard signed by Mick Fanning had the bids flying. It was a fabulous day full of laughs, jibes and generosity.
We thank all of our community who generously dug deep and gave back. We cannot do the work we do without your support.
If you’re keen to do something to make a positive difference in the lives of Queenslanders impacted by Motor Neurone Disease and have an interesting event/fundraising idea. Please get in touch with Tarah Ferguson, our Events and Community Fundraising Manager, by calling 07 3372 9004 or email events@mndaq.org.au.
When did you commence working at MND Queensland and what attracted you to work with us?
I started here in February 2023. I have a personal connection to MND after sadly losing two friends to this horrific disease in a two-year period. So when I saw that opportunity come up – I knew that I had to put my hat in the ring. Knowing what the families and friendship circles went through while supporting my friends - Peter and Judy with their MND diagnosis and subsequent passing. I really am here to do what I can to change things for others in their position.
Can you please tell our readers a little about your role at MND Queensland?
I sit in the Fundraising team and my role is to attract and encourage corporate and business partners to MND Queensland. I also look after our Grant program, where I uncover government, philanthropic and corporate grant opportunities. With no ongoing funding provided to us by our State Government, the importance of having good corporate citizens who understand the vital work that we do in providing care and support to our clients and their carers and families is paramount to our success.
What do you enjoy most about working at MND Queensland?
The people! Our clients are the most beautiful people – in the face of such a devastating diagnosis. Our supporters are kind and so interested in our mission and the team here at MND Queensland have a commitment to the cause that I have never seen before. It all just makes coming to work such a privilege.
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?
Unfortunately I did know a lot about MND before I started here. Having lost two friends to MND in the space of a few years - I was well aware of the beast that is MND. But I have learnt how different everyone’s progression and experience of MND is.
You’ve been working on building the corporate support for MND Queensland so that we can provide our services for people with MND. What are some of the successes and some of the challenges you’re finding in your role?
So many people are still unaware of MND and what a horrid disease it is. People are also unaware that we receive NO Government funding. I think that it is
MANAGER
assumed that we are a well-supported and well-resourced organisation. In my experience of working with a range of other charities – both medical and non-medical we are under-supported both in a corporate and Government sense. The businesses who do support us are absolute gems. They are generous and kind and they make such a massive difference in many lives.
What do you see as the benefits for companies to get involved in supporting the MND community?
Beyond the altruistic benefits. The expectation of businesses to actively engage in Corporate Social Responsibility (CSR) - to be socially accountable to themselves, their staff, their stakeholders, and the public. By practicing CSR, companies actively consider the impact they have on society, including economic and social aspects. Studies are repeatedly showing that millennials are only looking to seek employment with organisations that have a commitment to community and a social conscience, and consumers are increasingly considering CSR when they determine who to purchase from.
What do you get up to in your spare time? Do you have any pastimes or hobbies? Can you tell us a bit about Susie outside the office?
I have three wonderful grown up kids and three lovely grandchildren - the younger two in particular take up a lot of my time! They are three and five years old. The teenager is Mr Independent and I try to steal as much time as I can with him. I am very involved in my local community and can be found volunteering for a few different organisations on the Gold Coast.
Is there anything else you’d like to share?
If any of our Cornflower readers own businesses or think their employers might be interested in a corporate partnership – I would love to hear from you call our office or email susie.longman@mndaq.org.
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.mndaq.org.au/events, scan the QR code or call us on 07 3372 9004.
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