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Dear Community Member,
It's a pleasure to get in touch again and share some highlights about our work and invite you to attend one of the many events on our calendar, including a September packed full of awareness days which Muscular Dystrophy Queensland will celebrate with our colleagues and community members across Australia.
I was delighted to catch up with some old friends, and to meet new people at our recent Brisbane Community Launch of the Ride Walk Roll. I've committed to walk 100kms over September as my challenge. I join 90 other people all clocking up their kilometres for the event, and to raise funds to continue our range of charitable services. It's not too late to join, or cheer on our event participants. Head to the Ride Walk Roll website to see what people are up to.
I've been enjoying watching the success of the Australian paralympic team and particularly of the Paralympians living with neuromuscular conditions. A huge congratulations to them.
Have you seen the news about our newest Ambassador, Eloise Rothfield? We share a little more about that in the article below. There are also updates a heap of community events, a word or two from our Community Liaison Group and an invitation from our board. I hope you enjoy the read.
All the best,
Penny
Penny Deavin
CEO | Muscular Dystrophy Queensland
Cheering on our Para-athletes in Paris
We've watched with keen interest to cheer on our Australian para-athletes in Paris, keeping closer track of the successes of the team members living with neuromuscular conditions.
Dan Michel and Jamieson Leeson (pictured far left and centre below) were chasing the gold in the Boccia mixed pairs BC3 but sadly it wasn't to be. The pair settled for the silver after going down 4.2 to defending paralympic champs, Republic of Korea.
"We went out and fought really well, and to take it all the way down to the last ball, you wouldn’t want the quarter-final to end any other way. It’s just unfortunate, it didn’t fall our way today." Dan is quoted to say.
His team mate, Jamieson agreeing, "Of course it would have been nice to finish off with another medal this time around in the pairs, but that is sport. For now, we’ll take a bit of time off for the rest of the year, and then we’ve got our regional championships next year, which is the qualification for the world championships in 2026.”
Those keen for a higher-adrenaline sport, were closely watching the Australian Steelers take on Japan in the wheelchair rugby semi-finals but it was not to be, with a 52-51 loss in overtime sending them to the bronze medal playoff.
We were particularly interested to see the new team line up, with Emilie Miller and Ella Sabljak, joining the team to provide a strategically stronger line up, taking advantage of the sport's mixed-gender, mixed-impairment classification rules. Ella, a primary school teacher by trade, who recently moved across to wheelchair rugby after strong successes in wheelchair basketball, also lives with Charcot Marie Tooth disorder (CMT).
Just hours after their defeat to Japan, the Stellers faced Great Britain. Overcoming their disappointment of missing the gold medal match, in the best possible way, the Steelers secured the bronze -- the team's first bronze performance since the sport was introduced to Paralympic games in 1996 -- defeating Great Britain, 50-48.
We're certain all the para-athletes will take a well earned rest before setting their sights on victory in LA in 2028.
If you're inspired by the success of your fellow Australians, there are entry points for all para-sports whether you're keen to pursue an elite level of sporting achievement or just out for some fun and comradery. You can research each sport via the Paralympics website or register your interest in wheelchair rugby via the button below.
(Content sourced Paralympic.org.au. Writers L Ryan & T Mannion.)
Awareness Raising Days
September is a month to raise awareness for many of the different neuromuscular conditions that affect our community.
We're excited to share that, for the first time, the General Assembly of the United Nations has formally recognised Duchenne muscular dystrophy as one of the most common paediatric genetic rare diseases. This recognition officially marks World Duchenne Awareness Day (WDAD) to be observed every year beginning in 2024. In Australia, MDQ will join with our other state organisations to recognise the day, unified in our commitment to drive positive change for individuals and families affected by all neuromuscular conditions.
Muscular Dystrophy Queensland welcomes people with all types of neuromuscular conditions. Did you know that there are more than 75 genetically inherited neuromuscular conditions? If you want to know more about any of these awareness campaigns, or find out how you can get involved, please click on the logos.
Kids Holiday Fun - Have you got the music in you?
Come and share your love of all things music at MDQ's School Holiday Fun Day. We will be joined by a music therapist from Music Beats Therapy and you can try a musical instrument - or even bring your own if you like!
Dress up as your fave pop star and join in the fun. The activities are designed for kids 5-17 years of age with muscular dystrophy and other similar conditions, as well as their siblings. There will also be a Social Worker facilitated session available for parents.
Free pizza lunch provided!
Where: Toombul Shire Hall, 1141 Sandgate Road, Nundah 4012
When: Thursday 26th September, 10am - 2pm
RSVP: by 24th Sept to info@mdqld.org.au with any dietary requirements.
We're coming to Cairns!
Our physiotherapists are headed up to Cairns and would love to catch up with you for dinner at Cairns RSL The Esplanade at 6:30pm on Tuesday 10th September.
Please RSVP to suziz@mdqld.org.au or call us on 1800 676 364.
If you haven't already, and would like a physio appointment please get in touch - we may have a couple of slots available.
Meet our newest Ambassador, Eloise Rothfield
We're thrilled to share the incredibly talented Eloise Rothfield, known for her portrayal of Shelley Huffman in Netflix’s adaptation of Trent Dalton's novel, Boy Swallows Universe, has joined MDQ as our new charity ambassador.
Eloise, who deeply connected with the challenges faced by those living with neuromuscular conditions through her role, is committed to supporting our mission to raise awareness and funds for local individuals living with muscular dystrophy.
As Eloise says, “When MDQ reached out, I was honoured to join as an ambassador. They provide vital services and events like Ride Walk Roll that empower people to live their best lives.”
In her first official activity as charity ambassador, Eloise attended the Brisbane Community Launch of Ride Walk Roll and joined us as we set off on our first official kilometres for the month-long event.
Photo credit: (clockwise below) Grace Wiggles, Mark Rothfield & Sarah McCahon.
Ride Walk Roll is officially underway. We met up with some participants and supporters in the park at Redcliffe last weekend for the official launch.
MDQ Board vacancies. Would a Directorship suit you?
We are happy to welcome Ben Isaac, and his experience as a forensic accountant, to our Board of Directors. Ben was elected to the role at our AGM, as Director and also Chair of the Finance and Risk sub-committee.
We also farewelled long-standing Directors Gavin Ruddell and Tony Biggar, who were both instrumental in guiding the organisation through the necessary changes required to be ready for delivering services under the NDIS framework.
There is a vacancy on the board currently for a Director with expertise in law. Board meetings are hosted online via Microsoft Teams, meaning the position is open to anyone in Queensland with relevant experience.
Directors are asked to commit sufficient time to attend monthly board meetings, read board papers and occasionally attend to matters between meetings. Becoming a board Director allows you to make a meaningful impact in MDQ's mission, share and connect with new professional networks and developing valuable leadership skills in a supportive, collegial environment.
If you're interesting in becoming a Director, or know someone suitable, please get in touch with CEO, Penny Deavin directly.
Australian Neuromuscular Network 2025 Congress is coming to the Sunshine Coast
When we attending the ANN Congress in Melbourne earlier this year, there was resounding interest in an opportunity for community members to attend a similar event. We provided that feedback to congress organising committee, and we're delighted to share the 2025 event will feature a day dedicated for families, advocacy groups and community members. Even better, the 2025 event will be hosted in Queensland at the Sunshine Coast Convention Centre.
An early draft of the topics include; Dr. Gina Ravenscroft, "Improving diagnostics and gene discovery for adult neuromuscular diseases", Dr. Rhonda Taylor, "Working towards development of treatments for muscle diseases" as well as presentations by ANN committee members, Dr. Ian Woodcock and Dr. Anita Cairns.
When: Friday, 28th March 2025
Cost: $150 aprox. registration fee.
Discussion topics are still being finalised to be published shortly. Stay tuned for more information closer to the date.
Dylan Alcott Foundation presents ... Abilityfest
Ability Fest is the first of its kind, promoting access and inclusion within the music industry, proudly presented by the Dylan Alcott Foundation, Untitled Group & Triple J.
Ability Fest uses the power of music to bring people together and help normalise disability whilst setting a standard for accessibility, inclusion and diversity at all events.
Community Resource Unit presents ... Connecting with the Community
Do you want to feel more connected with your community? Maybe CRU's Connecting with the Community workshop is for you.
To belong is a basic human need that we all share – but how often do we think about what it means, and what it takes to foster and achieve belonging? It is never too early or too late to look for and find new ways to become part of a community.
In this interactive workshop for people with disability, their families and supporters we explore, discover, brainstorm and learn how to develop and build meaningful connections in community.
Muscular Dystrophy Queensland presents ...
Coffee & Chat in Capalaba
Join Noni from the MDQ's Community Liaison Group for morning tea at 10:30 am, Monday 16th September at "The Bush Pantry" at Horizons, 1-15A Runnymede Rd, Capalaba. Coffee, tea, cakes, etc available at own cost.
Open to anyone with a neuromuscular condition. Bring a friend, family member or carer if you need and make some new connections within the community.
RSVP to info@mdqld.org.au
Sunshine Coast Lunch
Thanks to our wonderful Sunshine Coast community for joining us for lunch at the Banana Bender Pub last month. It was a lovely opportunity to meet and reconnect with the team and other members of the community.
From the Community Liaison Group (CLG)
The Community Liaison Group was formed in late 2023 to ensure the voices of the seven hundred plus members of Muscular Dystrophy Queensland and their carers had a way to be heard. As well as to assist MDQ’s understanding by contributing current real lived experience to the conversation around its organisational priorities.
In its first full year of operation the committee has focused on the provision of multiple ways for the community to connect. By creating/commencing:
• The MDQ Peer Support Facebook Group for 18 plus. A place to locate relevant information, connect with other peers in the community and get your questions answered.
• The monthly Virtual Coffee and Chat. A place to meet and chat with others living with MD. The link to each meeting can be found in the MDQ Peer support events page or by emailing CLGChair@mdqld.org.au.
• In person events for the community. The next one will be a Trivia Night to be held on the 5th October 2024. Details will be emailed and posted to the MDQ socials. We hope to see many of you there.
The committee is well aware that MDQ members are geographically dispersed with a wide range of different needs and impacts. We are therefore committed to providing connection through a range of mediums and at varied geographical locations, days and times. We hope in this way everyone will have a chance to connect throughout the year.
The committee has also worked with MDQ in their provision of an increase in community events over the last eighteen months. From the Easter/Christmas events, the school holiday program and the Walk Ride Roll launch.
Want to get involved?
The community liaison group is a dedicated small group of people who could benefit from the addition of you. Especially if you are from regional Queensland, or under twenty-five. If you can commit to quarterly meetings and adding your voice to discussions, and working with others collegially we would love to have you.
Can’t join the committee but still want to help? Please take the time to fill out the MDQ Annual Survey which will come out towards the end of the year.
If you have any queries, concerns or ideas or just want to introduce yourself feel free to contact Sarah Shaw at CLGChair@mdqld.org.au.
Hope to see you soon.
Sarah Shaw on behalf of the CLG.
Lucky 13 Lottery closing Friday the 13th
Is 13 your lucky number?
Muscular Dystrophy Queensland's Lucky 13 Lottery, draw number 113 will close on Friday, the 13th September.
You could finally take that well-deserved holiday, clear off your credit card, or spoil yourself with a shopping spree! All while giving back a little, to provide free supports and services for our Queensland neuromuscular community.
Lock in your chance today. You also have a chance to win a $500 e-Gift voucher for 2nd or 3rd prize! Hurry, there's only 5200 available. Get in quick! Tickets are selling fast.
