the cornflower
TWO FIGHTMND GRANTS WON
MND Queensland recognises the amazing fundraising efforts of FightMND, raising funds and awareness through their beanie campaign and Big Freeze events and the amazing amount of research funding that they raise. We’re also grateful for their support and are pleased to report that they have provided two grants to MND Queensland amounting to $400,000!
The first project – Community Capacity Building - will allow MND Queensland to share our expertise with people impacted by MND throughout the State in the form of a comprehensive education offering. We will design educational programs aimed at meeting the needs of specific groups of people impacted by MND including the person diagnosed, informal carers, health professionals and service providers. In addition, we will establish an extensive volunteer program which will enable us to expand the supports we can offer, whilst giving people with the desire to contribute to our mission the opportunity to do so. Both of
these programs will bring our community together, empower individuals through increased knowledge and widely share the experience and expertise that exists within the community.
The second project funded is our Care Packages. This grant will enable us to provide MND Queensland’s multidisciplinary services to those not eligible for NDIS funding without any out of pockets costs. Each care package will consist of $5,000 of funding to cover the cost of accessing our MND Advice, equipment hire and allied health services. This will ensure that older Queenslanders with MND can still access expert services and the equipment they so desperately need.
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.
FROM THE CEO’S DESK WITH STACEY THORPE
Spring is upon us! And given that Spring is a time of new beginnings, I’m really excited to share with you all the ‘new’ things that have happened at MND Queensland!
We had our first ever Sunshine Coast walk in early August and despite some early rain, the location lived up to its name for the walk and we got to enjoy warm sunshine and beautiful views. And whilst the location was spectacular, it was the turnout that really made the day. We had over 200 people join us, and between them they raised over $30,000 for our cause! The atmosphere was amazing and I very much appreciated the opportunity to meet some wonderful people!
Since my last update, we have welcomed some new staff. We have three new MND Advisors/ Support Coordinators on the team. They are Sophia Bailey (Gold Coast), Amy Frosdick (Townsville) and Justine O’Neill (Cairns). These are all newly created roles and we are delighted to be able to now offer services on the ground in North and Far North Queensland as we know how important it is that EVERY Queenslander impacted by MND has access to our MND expert services.
We also have two new Occupational Therapists, Kelly Gehrke and Angela McKenzie. The demand for our Occupational Therapy services has been significant and we have expanded to ensure that even more people can access an Occupational Therapist that has a thorough understanding of their condition and will adapt their service and respond to changing needs as that condition progresses.
Thanks to very generous grant funding provided to us by FightMND, we have also been able to introduce two brand new roles to MND Queensland. Onolina Moefaauo has joined the team as our Volunteer Manager. Onolina has extensive experience in managing volunteer services and she is currently enthusiastically exploring opportunities to expand our services and offer those who want to volunteer, even more ways to do so. Simone Flanderka will have joined the team by the time you read this. Her role is to establish a comprehensive education program that will meet the varied needs of our community.
Both projects are designed to increase the support MND Queensland is able to provide and,
through building capacity within our community, contribute to us achieving our mission of reducing the impact of MND on every Queenslander.
Keep an eye out for our emails and social media posts for more information on both of these new opportunities.
This growth means that MND Queensland now employs 25 people. Every single one of whom, is working exclusively with the MND community. This means we have a large team of MND experts, working collaboratively for the benefit of people impacted by MND so that any Queenslander seeking support, just has to reach out and we will be there to assist in whatever way they need.
As well as providing quality services to individuals, we also have a strong desire to bring the community together and create opportunities for people with MND to connect with each other. Our walks are a great way to achieve this, and our growing education and volunteer offerings will do so as well. However, there is no better example of the value of community than our recent Tribute Night, held on Blue Cornflower Day. It was a truly moving occasion and seeing the support that members of our community offered to each other was humbling.
Whilst it will be a very different occasion, we hope that our 40th Birthday celebrations will be another opportunity for the community to come together at our gala. Tickets are selling fast so, if you want to celebrate with us, please get yours asap. I really hope to see you there!
AMAZING COMMUNITY SUPPORT FOR MND QUEENSLAND
Without ongoing government funding MND Queensland is heavily reliant on community support, donations, sponsorship, grants and bequests to provide many of our services and supports to Queenslanders impacted by Motor Neurone Disease. Over the last few months we’ve had a tremendous amount of support that we wanted to report to you.
The Johnny McCowan Golf Cup was held at St Lucia Links on Thursday 24 August. The event saw around 50 players come together to pay tribute to the late Johnny McCowan and raise much-needed funds for MND Queensland. Overall around $33,000 profit was made from the event that the organisers are hoping to turn into an annual golf day.
On the same evening around 100 people gathered at Brisbane Skytower for the Blue Cornflower Day Tribute Ceremony. This year’s tribute award went to Glen Martin who was the inspiration behind the state-wide Dan Murphy’s campaign earlier this year. Leanne Sklavenitis shared her inspirational MND story and our Patron Dr Rob Henderson also spoke at the
Ten
Queensland in August. They raised almost $25,000 to support Queenslanders impacted by MND. MND Queensland’s President, Diana Melham and fellow Management Committee Member, Dr Julia Rollston participated in the trek along with our CEO, Stacey Thorpe. Stacey said ‘The trek was a great opportunity to get into nature and challenge ourselves and come together with a group of people who wanted to make a difference.’
The Dalwood-Wylie Foundation recently granted us $2,950 to purchase five suction units to make available to older people with MND who cannot access the NDIS.
The Ipswich Eagles have been holding an annual MND fundraising day and this year they raised $2,157 to help Queenslanders with MND.
We’d like to express our sincere gratitude to all of our amazing fundraisers, donors, volunteers and supporters for truly making a positive difference in the lives of people impacted by this devastating disease. You’re all heroes to us.
If you’d like to support MND Queensland by getting involved or putting on your own fundraiser get in touch with us by calling 07 3372 9004, email events@mndaq.org.au or visit www.mndaq.org.au/page/107/fundraise
WALK TO D-FEET MND BILOELA - SHOWING COMMUNITY SPIRIT
A community-driven Walk to D-Feet MND event was recently held in Biloela on Father's Day. Our wonderful supporter, Bev Krafft had previously put on a hugely successful Drink Tea for MND event last year, but she wanted to do more... so she got in touch with us a few months ago to start the ball rolling on hosting a Walk to D-Feet MND in Biloela!
The event was a great success with around 100 people in attendance including the local mayor. The event raised $10,000! An amazing result from a small town. It really shows the community spirit of this small town.
Well done to Bev and your volunteer helpers. Thank you so much for a wonderful effort.
Our gratitude to all of the participants and donors for supporting families impacted by Motor Neurone Disease.
SUNNYBANK COMMUNITY AND SPORTS CLUB GRANT AWARDED
With an expanding team we need to be on the road and responsive to our clients means that we have had the need to build up a small pool of vehicles. We were fortunate that the Sunnybank Community and Sports Club provided a generous grant to purchase a Kia Picanto.
The Sunnybank Community and Sports Club generously granted over $18,000 to enable MND Queensland to purchase another Kia Picanto to add to our fleet. We’ve branded up the vehicle and included a special sticker recognising the Club fantastic support.
Thanks so much to the Sunnybank Community and
NOT ALL HEROES WEAR CAPES - OUR VOLUNTEERING PROGRAM
At the heart of MND Queensland's mission lies a commitment to enhance, empower and support the lives of those living with MND – their families and carers. MND Queensland is looking to grow its volunteer services and volunteer opportunities and as such is seeking more volunteers - an inspiring group of individuals who selflessly dedicate their time, skills, being a helping hand, and an empathetic ear to all that are affected by MND. By becoming an essential part of the MND community as a volunteer you can help make a difference.
The volunteering opportunities at MND Queensland are diverse and range from assisting with our Life Stories Program, Voice Banking, and fundraising events through to participating in support groups, administration support, or assisting our equipment and delivery services. Each role, no matter how big or small, has a lasting impact on improving the quality of life for those affected by MND. We are seeking volunteers for a variety of different roles and responsibilities.
Are you ready to make a meaningful difference in the lives of those affected by MND? Join the MND Queensland volunteer community and become a beacon of hope for individuals and families facing this challenge. Your contribution, no matter how small, can create a world of positive change. To learn more about volunteering opportunities, visit our website.
Together, we can all help build a brighter future for everyone touched by Motor Neurone Disease.
If you’d like to learn more about volunteering for MND Queensland call our Volunteer Manager, Onolina Moefaauo on 07 3372 9004 or email volunteering@mndaq.org.au or visit www.mndaq.org.au/page/85/ volunteer.
CREATE A FREE WILL AND LEAVE A GIFT TO MND QUEENSLAND
We’re excited to announce our new partnership with Gathered Here, Australia’s most trusted free online Will platform!
You can create your own free Will online, it only takes minutes! While you’re creating your Will we encourage you to consider leaving a gift to MND Queensland.
Gifts in Wills - or bequests - help us provide services and supports to Queenslanders impacted by Motor Neurone Disease. MND Queensland receives no ongoing government funding, so donations, bequests, community fundraising and grants are very important to be able to provide many of our services.
By including a gift in your Will, you can create a lasting legacy of helping Queenslanders impacted by Motor Neurone Disease.
You easily can create your free Will online at this link. http://bit.ly/47T7SL4
SPOTLIGHT ON MND QUEENSLAND SERVICES BY JASON REED
MND Queensland services have continued progressing across winter. In the autumn edition I spoke about advertising for new MND Advisors/Support Coordinators in Townsville and Cairns. I’m excited to announce we have welcomed Amy in Townsville and Justine in Cairns. Both have come to us with a great deal of experience and have a hit the ground running and are out in the community now meeting current clients and stakeholders. If you would like to connect with them, please reach out.
In more exciting developments for our Advisory/ Support Coordination team, Sandy our Gold Coast MND Advisor has moved into a newly created role of Team Leader - Advice & Support Coordination. This role has been created due to the growth of this team and the people we are servicing. It signifies an important investment in supporting the growth of this team, focusing on new locations outside of south-east Queensland. Sandy has been with MND Queensland for several years now and brings a range of skills to her new position.
Recognising Sandy has several clients on the Gold Coast in addition to her new responsibilities and to ensure our clients continue to receive a top level of service, we have appointed another Gold Coast MND Advisor/Support Coordinator, with Sophia joining the team In July. This brings our team of MND Advisors/Support Coordinators to seven.
Our growth hasn’t only been limited to our Advisory/Support Coordination team. We have also welcomed Angela and Kelly into our Allied Health team. Both are Occupational Therapists and add to our capacity as well as our team’s capability. In June we also welcomed Salma, our Speech Pathologist back to the team after some extended leave.
We have also been incredibly fortunate to be able to welcome a new Allied Health Assistant to our team, Helen joins MND Queensland with a wealth of knowledge and will be working across our Allied Health team as well as the Equipment Service. This also brings our Allied Health team to seven health professionals.
MND Queensland services have seen considerable growth this year adding new staff and for our team to be providing the best service possible we understand the need to give our staff an opportunity to learn and gather the up-to-date
advances in care and support of people with MND. With this in mind we have invested in our services staff attending the Biannual National MND Conference. Some of the most knowledgeable people involved in care and support of people with MND attended and presented at the conference. These experts included our very own Speech Pathologist, Dr Salma Charania who presented on her PhD research project she had conducted with The University of Queensland. Congratulations Salma on being selected to present, this shows just some of the expertise our staff bring to the work they do every day.
Over the last two months we have started to see our clients benefit from our care packages that have been made possible by a grant from FightMND. These packages allow people with MND who are not eligible for the NDIS to access several free services through our organisation including advice, equipment, Occupational therapy, Speech Therapy and Physiotherapy. We are over the moon to be to provide these services that would otherwise not be funded.
Our MND Advisor/Support Coordinator, Jason Russell shared that when he notified a client we would be able to provide these services free of charge their daughter was in tears as, without this package, her dad would not be able to access these important services. I encourage you to speak with your Advisor or to contact the office to find out more information about our care packages.
40TH ANNIVERSARY RAFFLE - LIMITED TICKETS & GREAT PRIZES!
Would you like to enjoy the sea breeze from your tropical waterfront bure in Fiji… or take a well-deserved five-night break at a Noosa resort… or go on a shopping spree at David Jones? Get tickets in our 40th anniversary raffle and you could be doing one of these luxurious activities and you’ll be supporting families impacted by Motor Neurone Disease via the funds raised!
We’ve organised a fantastic raffle with almost $10,000 worth of prizes up for grabs! Even better we’re limiting ticket sales to just 1,000 available! That’s great winning odds!
First prize is a seven-night stay for two at the Korosun Resort in Fiji staying in a Edgewater Bure plus $2,000 cash to help you get there or spend. Total first prize value $7,000.
Second prize is five-nights stay in a Lake View Room for two people at Noosa Holiday Accommodation valued at $1,250.
Third prize is a $500 David Jones gift card to go on a shopping spree.
Tickets are $40 each, or get three tickets for $100 or seven tickets for $200. Don’t forget there are only 1,000 tickets available and three prizes up for grabs. We’ll let you do the calculations on those winning odds.
Tickets are only available online, so get yours now at www.raffletix.com.au/?ref=3y49e.
You can also scan the QR code below to go straight to the site and get your lucky tickets now before they sell out!
Don’t miss your chance to go into the draw for these fabulous prizes. As you’re buying your tickets you can also be comforted knowing that your purchase is helping Queensland families impacted by Motor Neurone Disease.
The raffle will be drawn at 9AM on Monday 27 November 2023. Other terms and conditions can be found on the website.
Thanks so much for your support and good luck in the draw.
THE INAUGURAL WALK TO D-FEET MND SUNSHINE COAST
The very first Walk to D-Feet MND Sunshine Coast was held at Mooloolaba Rotary Park on Sunday 6 August and it was a massive success!
We were hoping for around 100 participants and set a goal of raising $15,000, but both participant numbers and fundraising goals were smashed! There were over 200 registered participants and around $33,000 raised from the event!
Sunshine Coast Major, Mark Jamieson, joined us at the commencement of the walk and spoke to the crowd. At the finish line, Fiona Simpson MP helped present awards.
Our Highest Fundraising Team award went to Boof’s
Tribe who raised over $11,700. Team captain, Ian took out the Highest Individual Fundraiser award raising over $1,200 himself.
The Alexandra Headland Rotary Club fueled everyone up with bacon and egg burgers and juice and also made a generous donation to MND Queensland.
We’d like to thank everyone who participated and donated for making the inaugural Sunny Coast walk a huge success. We’d also like our special guests, Don from Bay FM, the Rotary Club, The Coffee Crew and the Sunshine Coast Council for helping to make the day a huge success.
STAFF PROFILE: LEIGH GILBERT, CLIENT SERVICES COORDINATOR
When did you commence working at MND Queensland and what attracted you to work with us?
I initially started work with MND Queensland on a casual basis to help with admin – after leaving a tenyear fundraising role at another charity organisation –nearly five years later, I am still here and have not looked back once.
Can you please tell our readers a little about your role at MND Queensland?
My role has certainly evolved over time along with the growth of the organisation. I now provide admin support to the Client Services Team, am responsible for the Services accounts receivable and manage the Infoline.
What do you enjoy most about working at MND Queensland?
I love being part of a fabulous team that are so passionate about caring and supporting those affected by MND – not just the person diagnosed but their families and carers too.
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?
No I didn’t know much about MND apart from hearing about Stephen Hawking and the Ice Bucket Challenge fundraising. There is so much I have learnt about this insidious and hideous disease for which there is still no cure.
In the time you’ve been working at MND Queensland you would have witnessed our Services grow. What are some of the biggest changes you’ve seen and what do you think are some of the biggest improvements that have been made to make a positive difference in the lives of people impacted by MND?
When I started there was just five of us working out of the little old house in Inala – now we have 25 and I am so very proud of all that has been achieved in such a relatively short time – thanks to past and present CEOs, Ian and Stacey.
There has been so many changes and improvements – and more to come! Knowing that we can provide all our services from under the one roof and be able to learn from each other’s expertise and strengths is probably the best outcome for our clients and their families.
What do you think are some of MND Queensland’s strengths?
Being around for 40 years is no mean feat, but being the only Queensland organisation to be able to provide a multidisciplinary approach and also being part of a national body i.e. MND Australia - to have the additional connections with the other state organisations is a huge strength.
You’re often the first point of contact over the phone for someone when they are first diagnosed with MND. Are there any commonalities that you find in your chats? Any questions that get raised time and time again?
Every call is different as is everyone’s journey with MND. However most newly diagnosed (and their families) are very overwhelmed and really do not know where to turn. Thankfully, they make the call to us, so that I can let them know how we can help and then connect them to one of our MND Advisors/Support Coordinators – who will be able to assist further with accessing funding, equipment hire, referrals to allied health professionals, voice banking etc. We have so many fantastic services and programs available now!
What is one of the most valued, or important pieces of advice that you normally give to someone newly diagnosed with MND?
That they are not alone and the whole team at MND Queensland is here to support them and their families every step of the way.
What do you get up to in your spare time? Do you have any pastimes or hobbies? Can you tell us a bit about Leigh outside the office?
A few years ago, I started playing around with decorating plant pots for my own succulents. Now, I have a small hobby business where I make and sell decoupaged pots and homewares. Of course, cornflowers feature on a few of them as does my other favourite flower – the poppy. You can check them out on my Facebook page – Decoupage Downunder. Got to love a free plug!
Is there anything else you’d like to share?
I feel so fortunate to have a job that I absolutely love and to be a part of the wonderful team at MND Queensland and although retirement age is looming, I hope to be around for a few more years yet!
WHAT’S ON - GET INVOLVED
23 Sep - 40th Anniversary Gala at Crystalbrook Vincent, Brisbane. Tickets at www.mndaq.org.au/events/29/gala
22 Oct - Walk to D-Feet MND Redcliffe, from 9AM at Suttons Beach. Register at online and start fundraising at www.mndaq.org.au/events/27/walk-dfeet-mnd-redcliffe
27 Nov - 1 Dec - Snag Ya Boss! Put on a workplace BBQ, drinks, morning or afternoon tea, or even better, challenge the boss to put on a party for the staff and collect donations and then get the company to dollar match it! Speak with your boss and set up your event page here to collect donations www.mndaq.org.au/campaign/55/snagyaboss
MND SUPPORT GROUP MEETINGS & EDUCATION SESSIONS
We welcome people with MND, their family and informal carers to join our MND Support Group Meetings and Education Sessions. In our Support Group Meetings you’ll get to meet other people who are experiencing their own MND journey so that you can share and learn from one another. During our Education Sessions you’ll hear from the MND Queensland team of experts as well as special guests about a range of topics to help people live better with MND. We’re hosting both in person meetings and some are a hybrid of both in person and online. To RSVP, get more information or a Microsoft Teams invite (or support to join online) email supportgroups@mndaq.org.au or call 07 3372 9004. Please refer to our website or social media for exact location details and education topics.
MND QUEENSLAND DONATION FORM - SPRING 2023 NEWSLETTER
I would like to donate: $ (write amount) I’d like to give this amount monthly via my credit card
I am paying by: Visa MasterCard Cash Cheque/Money Order (made out to MND Queensland)
For direct deposit donation details, please call 07 3372 9004 or email info@mndaq.org.au
My Details: Name: Address: Suburb:
Postcode: Phone:
Card Number:
Card Expiry:
Cardholder’s Name:
Cardholder’s Signature:
CSC: (3-digit CSC on back of card)
to: MND Queensland, PO Box 470, INALA QLD 4077 Please send me information about leaving a gift in my Will Or, if you are using a credit card you can call us on 07 3372 9004 or donate online at www.mndaq.org.au/donations
