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June / July 2024
Dear Community Member
The year is ticking over quickly with winter already upon us. Cold and flu season approaches, so I wanted to share a quick reminder of our Cough Assist loan program. MDQ still has a few devices available for loan. If you are battling a respiratory infection and feel that you could benefit from a short-term equipment loan, please let us know.
I’m just back from the Australasian Neuromuscular Network (ANN) Congress, hosted in Melbourne 27-29 May 2024. What a delight it was to be in a room filled with clinicians and researchers all focused on neuromuscular conditions. Hot topics included readiness for clinical trials with various presentations about upcoming trials for those with FSHD and LGMD, review of drug trials, and treatment findings for those with Duchenne and SMA. Researchers also described promising studies completed here in Australia manipulating muscle cell development in MDX mouse models and in cells grown in a Petrie dish, which informs the development of potential treatments. Specialists also shared their knowledge on respiratory, cardiac, and obstetric care considerations. Dr. Ian Woodcock, ANN President & paediatric neurologist at the Royal Children’s Hospital Melbourne, closed the meeting by saying how lucky we are to be in Australia which is punching above its weight in its focus on neuromuscular disease.
Muscular Dystrophy Queensland’s Annual General Meeting was held on 29th May 2024. We welcomed the new director, Ben Isaac to the board. Ben, who will also Chair the Risk & Finance Committee, first came to know MDQ through Red Bow Day celebrations hosted by Nexia Brisbane and was keen to take up the vacancy left by outgoing director, Gavin Ruddell, who joined the board in March 2020. Tony Biggar, also chose not to stand for re-election this year, having joined the board in 2016. Both Gavin and Tony have provided invaluable support and sound leadership during their service. They generously shared their time and guidance, which has been greatly appreciated.
I hope you enjoy the June-July community update. We would love to see you involved in one of our upcoming social activities and I encourage you to respond to Rare Voices’ call for you to share your priorities and concerns regarding genomic testing options. (see below for more information).
Penny Deavin
CEO | Muscular Dystrophy Queensland
Survey Invitation Genomic Testing in Rare Diseases
Community and Patient Preference Research (CaPPRe) is partnering with Rare Voices Australia and a group of community stakeholders to conduct an online survey with patients and carers in Australia. Your participation is valuable in exploring the priorities and concerns of people impacted by rare diseases when it comes to genomic testing options.
Who can participate? They are looking for people living with a rare disease in Australia and/or their carers. Participants must be over the age of 18 to answer the survey.
What's involved? Eligible participants can complete the 25-minute online survey on their computer or large tablet device. You do not need to complete the survey in one sitting.
Because this is a survey conducted by a third party, if you do have any queries, you may email Maya at: maya.joshi@cappre.com.au.
2024 Community Events | Diary Dates
Let the Games Begin - School Holidays Fun
It might be getting colder, but we have plenty to keep the kids warm. Join us in the school holidays for some survivor fun. Outwit, outplay and outlast your friends! Challenge yourself, and test your survivor skills. Enjoy individual and team challenges, and a scavenger hunt, with plenty of prizes to be won. The activities are designed for kids 5 - 17 years of age with muscular dystrophy, and we will be providing some complimentary pizza! There will also be a Social Worker facilitated session available for parents to attend.
Taking place on Thursday 27th June, 10 am - 2 pm you can rsvp by Monday 24th June to Suzi e: suziz@mdqld.org.au with any dietary requirements.
Family Fun | Saturday 27th July 2024 | 2 - 4 pm
There is something for everyone! Hosted by our Community Liaison Group, you are invited to join in on all of the fun with the whole family. Put the screens down, and enjoy some good old fashion games. Afternoon tea will be provided and the event is free to attend.
RSVP by Sunday 7th July to clgchair@mdqld.org.au and please also advise if you have any dietary requirements. To be held at:
Bracken Hall, 77 Bracken Street, Bracken Ridge QLD 4017.
Who is Caring for Carers?
Caring for a loved one is rewarding, but an informal carer may find they lose out on “me” time.
We understand that disability carers are more likely to experience loneliness and miss out on social and educational opportunities.
According to a 2022 Carers Australia survey, 62 percent of carers lack time for themselves and that often puts their own wellbeing at risk. They may also miss out on beneficial social and work opportunities.
Support is available for carers of all ages, including respite care, counselling and educational grants. Workplaces and social circles can also support carers through considerate actions and understanding. It is important for a carer to care for themselves. It enables them to best look after the people around them.
The Disability Support Guide provides an interesting resource outlining support options for carers.
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Counselling & Disability (NDIS) Support
With the ever-changing world we live in, at times, our day-to-day tasks, issues and challenges can feel overwhelming and impossible, leaving us stuck and isolated in our thoughts.
JP is a compassionate and experienced counsellor with over ten years of relevant and professional experience, working with individuals and families. His background in counselling is enriched by his own unique personal and professional life.
Becoming an accredited counsellor was a natural transition for JP, who draws upon his professional background in the community, disability, sports athlete development as an Australian international Boccia athlete and corporate sectors of finance and administration.
Having lived with muscular dystrophy since his teenage years, JP intimately understands the challenges that come with navigating change. While often unwelcome, change presents opportunities for transformation and growing self-awareness.
Through his journey, JP has learned to navigate the physical, psychological, and social challenges – adjusting, developing awareness and inner-strength along the way.
If you would like to discuss anything with someone outside of your circle, consider contacting JPL Counselling. They provide professional and compassionate counselling therapy aimed at addressing problematic thoughts, behaviours, beliefs, emotions, and associated physical symptoms.
E: JP@jplcounselling.com.au | P: 0403 306 792
Needing OT or Physiotherapy Support?
Our services are specifically designed to support the challenges faced by individuals with neuromuscular conditions. Our staff regularly benefits from upskilling sessions to expand their knowledge and skills in order to guarantee clients receive a comprehensive service that compliments their specific needs.
The allied health team, support people across their lifespan, including children, adolescents and adults (including people over 65). We would be happy to help you with:
- In-home therapy services in Brisbane, and Gold Coast
- Outreach service to Toowoomba, Sunshine Coast, Scenic Rim and Cairns
- Centre-based services at the Client Centre at Underwood
- Telehealth services available to all of Queensland
- Assessments and monitoring of physical status
- Advice on home programs and respiratory management in the community setting
- Small group and individual hydrotherapy at community pools
- Training of support workers
- Support to students in their educational setting
- Equipment trials and prescriptions such as walking aids, scooters, manual and power wheelchairs
Our experienced team can easily help with reports and applications for assistive technology, and additional funding requests to support peoples changing needs.
Plan Management
Do you need help managing your NDIS plans? We have highly experienced staff who will provide a personalised service, with the latest technology to make sure:
- Your suppliers can submit their invoices easily and receive prompt payments.
- You are clear on how much funding you have available at any point in time.
- You can prepare in advance with budget projections to ensure you are not over or under spending.
- Free up your time and leave it to our team.
Support Coordination
Did you know that Support Coordination can be funded in your NDIS plan. They will help you find suitable providers and:
- Connect with service providers
- Help you understand NDIS processes
- Develop service agreements outlining arrangements with your providers
- Solve problems
- Create and manage your NDIS Plan
- Work towards achieving your goals
Please contact us if you would like to discuss this further. You may also find more information here.
Busting the Myths About NDIS Reforms
