Resources

September 16, 2026

NDIS Changes Explained – Information Session

The recent changes to the NDIS have created questions and uncertainty for many participants, families and carers. In this information session, Muscular Dystrophy Queensland's Support Coordination team provides an overview of the key legislative changes, explains what we currently know, discusses how the reforms may impact participants, and answers common questions from the community. The session also highlights available support and practical steps participants can take as they navigate these changes.

Webinars & Information Sessions

July 7, 2026

Finding and Managing your Support Staff – Information Session

This information session was designed for people with disability and families who manage their own support arrangements. Topics included engaging support workers as employees or contractors, workplace health and safety, worker screening requirements, service agreements, recruiting and interviewing support workers, and managing support budgets.

Webinars & Information Sessions

May 27, 2026

MDQ Allied Health Panel Q&A, Practical Support for Neuromuscular Conditions – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, members of the MDQ Allied Health Team answer community questions and share practical advice on topics including assistive technology, NDIS supports, lung health, manual handling, housing and maintaining independence.

Webinars & Information Sessions

May 27, 2026

Emma Weatherley – FSHD Research & Clinical Trial Updates – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, Emma Weatherley, CEO and Managing Director of the FSHD Global Research Foundation, shares the latest updates in FSHD research, clinical trials and global advocacy efforts. This session explores emerging developments in FSHD, the importance of clinical trial readiness, and initiatives supporting people living with FSHD and their families.

External Website

May 27, 2026

Save Our Sons – Community, Care and Research in Duchenne & Becker – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, Alannah Young, CEO of Save Our Sons, and Deb Robins, Community-Led Projects Coordinator, discuss the support available to individuals and families living with Duchenne and Becker muscular dystrophy. This session explores lived experience, practical care and community support, while providing an overview of current research, clinical trial readiness and the importance of informed hope.

External Website

May 27, 2026

Alexandra Childs – Preliminary Sleep Treatment Survey Findings in Myotonic Dystrophy – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, Alexandra Childs, Clinical Measurements Scientist and PhD candidate, shares early findings from a sleep survey exploring the experiences of people with myotonic dystrophy using BiPAP and CPAP therapies. This session highlights the impact of sleep and respiratory challenges on daily life and explores opportunities to improve support and outcomes for individuals living with myotonic dystrophy.

External Website

May 27, 2026

Dr Anita Cairns – Caring for a Child with Muscular Dystrophy – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, join Dr Anita Cairns, Paediatric Neurologist and Clinical Lead for Neuromuscular Clinical Trials, as she explores caring for children with muscular dystrophy, including the challenges families face, the importance of multidisciplinary care, and how research is helping improve outcomes.

External Website

May 27, 2026

Dr Robert Henderson – Neuromuscular Clinical Trial Updates – Information Session

As part of MDQ’s 2026 Neuromuscular Research Seminar Series, join Dr Robert Henderson, neurologist and neuromuscular specialist, as he explores the world of neuromuscular clinical trials, including how trials are designed, key challenges, and what participation may mean for people living with neuromuscular conditions.

External Website

March 26, 2026

The Essential Role of Self-Care for Carers – Article

Caring for someone with a neuromuscular condition can be rewarding, but it can also be physically, emotionally and mentally demanding. This article explores why self-care is essential for carers, common barriers such as guilt and time pressures, and the impact of stress and burnout. It outlines practical, achievable self-care strategies across physical, emotional and social wellbeing, and emphasises the importance of recognising your own needs, seeking support and building a personalised approach to maintain resilience, wellbeing and capacity to care.

Article

March 10, 2026

Pain Management in Neuromuscular Conditions – Article

Pain is common in people living with muscular dystrophy and other neuromuscular conditions. This article explains the causes and types of pain, contributing factors, and evidence-based management strategies, including physiotherapy, lifestyle adjustments, psychological therapy, and medications. It also highlights the importance of assessment, individualised treatment, and a multidisciplinary approach to improve comfort, function, and quality of life.

Article

January 29, 2026

Dr. Antony Winkel Muscular Dystrophy Update – Information Session

Hear from Associate Professor Dr. Antony Winkel as he presents the latest updates in muscular dystrophy research at Muscular Dystrophy Queensland’s Neuromuscular Medical Seminar, held on 27 May 2025 at the Logan Entertainment Centre.

Article

January 21, 2026

Help with CPAP and Bilevel Therapy – Article

CPAP and Bilevel therapy are commonly used to support breathing during sleep for people living with muscular dystrophy and other neuromuscular conditions. This article explains how these therapies work, common challenges people may experience, the importance of mask fit and comfort, and how ongoing support and review can help make treatment more effective and sustainable over time.

Article

January 8, 2026

Sleep and Sleep-Disordered Breathing in Muscular Dystrophy – Article

Sleep and sleep-disordered breathing are common in people living with muscular dystrophy. This article explains why sleep is so important, the types of sleep disorders seen in muscular dystrophy including sleep apnoea and hypoventilation, how these conditions are diagnosed and the role of treatments such as CPAP and BiPAP.

Article

January 8, 2026

Treatment for Sleep-Disordered Breathing in Muscular Dystrophy – Article

Sleep-disordered breathing affects many people living with muscular dystrophy. Treaments such as CPAP and Bilevel therapy help support breathing, while masks or chinstraps improve comfort and effectiveness. Regular review and personalised adjustments ensure treatment works best for each individual. Read the article to learn more.

Article

December 5, 2025

Respiratory Management in Neuromuscular Conditions – Article

Respiratory complications are common in neuromuscular conditions. Weak breathing and airway muscles can cause ineffective coughing and difficulty clearing secretions. Regular assessment, physiotherapy, cough assist devices and non-invasive ventilation help reduce risks. Muscular Dystrophy Queensland’s equipment loan program provides access to essential respiratory aids when needed.

External Website

November 24, 2025

Grief and Loss – Article

People living with progressive neuromuscular conditions, and their families, often experience ongoing layers of grief as life changes over time. This article explains living loss, non-finite grief and chronic sorrow, and explores how these experiences can affect emotions, identity and daily life. You’ll learn about common indicators of grief, the models that help make sense of these feelings, and practical ways to cope, seek support and build a new normal. The article also includes lived experience insights and guidance from allied health professionals.

External Website

November 21, 2025

Grief and Loss – Information Session

People living with progressive neuromuscular conditions, and their families, often experience ongoing layers of grief as life changes over time. Facilitated by social worker Vicki Carrick and CLG Chair Sarah Shaw, this information sesesion explains living loss, non-finite grief and chronic sorrow, and explores how these experiences can affect emotions, identity and daily life.

External Website

November 21, 2025

Fatigue Management in Muscular Dystrophy – Information Session

In this session, our allied health team discusses the causes of fatigue in people living with neuromuscular conditions and practical strategies to help manage it. We cover physical and cognitive fatigue, posture and positioning, activity pacing, energy conservation, the role of physiotherapists and occupational therapists, and other factors that may support better energy levels.

External Website

November 18, 2025

New to MDQ – Information Session

Learn about Muscular Dystrophy Queensland, the work we do and the supports we offer. This session covers our allied health services including physio and OT, community connections, events, support coordination and NDIS plan management. It’s a helpful introduction for anyone wanting to understand how we can support people living with a neuromuscular condition and their families.

External Website

November 12, 2025

The Importance of Preventing Contractures – Article

This article explains how contractures can develop in people living with muscular dystrophy and other neuromuscular conditions, the impact they can have on movement, comfort and daily life, and practical strategies to prevent and manage them to support long-term mobility and independence.

Article

October 21, 2025

Managing Fatigue in People with Muscular Dystrophy (Spanish) – Article

La fatiga es un reto importante para las personas que viven con distrofia muscular y otras enfermedades neuromusculares, ya que afecta a sus actividades diarias, su independencia y su participación social. Lea este artículo para obtener más información sobre cómo estas enfermedades afectan a los niveles de energía y sobre estrategias para controlar la fatiga y mejorar la calidad de vida.

Article

September 4, 2025

The Loop – Your Neuromuscular Resource Hub

The Loop is a centralised hub of information for Australians with a neuromuscular condition. It was created by Muscular Dystrophy Foundation Australia in collaboration with the neuromuscular community and state-based Muscular Dystrophy organisations.

External Website

August 29, 2025

Muscular Dystrophy Queensland Allied Health Q&A Panel – Community Information Session

Watch Muscular Dystrophy Queensland’s allied health Q&A panel from the 27 May 2025 Neuromuscular Medical Seminar. Learn about physiotherapy, occupational therapy, social work, support coordination, and practical tips for living with a neuromuscular condition.

Article

August 29, 2025

Spinal muscular atrophy (SMA)

Spinal muscular atrophy (SMA) is a genetic condition that affects nerves and voluntary muscle movement. It is usually diagnosed in infancy, and with treatment, children can grow and develop into adulthood. Click to find out more.

Article

August 29, 2025

Spinal-bulbar muscular atrophy (SBMA)

Spinal-bulbar muscular atrophy (SBMA) is caused by the loss of motor neurons that control voluntary muscle movement. The term “bulbar” refers to nerves in the lower brain that control muscles in the face, mouth and throat. Click to find out more.

Article

August 29, 2025

Myotonic muscular dystrophy (MMD) and congenital myotonic dystrophy (CMD)

Myotonic dystrophy (DM), including both adult (MMD) and congenital (CMD) forms, is the most common type of muscular dystrophy in adults. A key feature is myotonia, or difficulty relaxing muscles after use. Click to find out more.

Article

August 29, 2025

Limb-girdle muscular dystrophy

Limb-girdle muscular dystrophy (LGMD) is a group of muscular dystrophies that primarily affect the shoulders and hips. Muscle weakness and joint pain are common, and progression can vary from person to person. Click to find out more.

Article

August 29, 2025

Inclusion body myositis

Inclusion body myositis (IBM) is a common inflammatory muscle condition in people over 50. Myositis refers to inflammation of the muscles. Click to find out more.

Article

August 29, 2025

Idiopathic inflammatory myopathies (IIM)

Idiopathic inflammatory myopathies are non-inherited conditions caused by inflammation in the muscles or surrounding tissue. They include dermatomyositis and polymyositis. Click to find out more.

Article

August 29, 2025

Friedreich’s ataxia

Ataxia refers to uncoordinated movements, and in Friedreich’s ataxia this can affect walking, coordination and speech. The condition is caused by a genetic fault and can progress differently for each person. Click to find out more.

Article

August 29, 2025

Facioscapulohumeral muscular dystrophy (FSH or FSHD)

Facioscapulohumeral muscular dystrophy (FSH) causes progressive weakness in the face, shoulders and upper arms, and often affects walking due to foot drop. Symptoms and severity can vary from person to person. Click to find out more.

Article

August 29, 2025

Emery-Dreifuss muscular dystrophy

Emery-Dreifuss muscular dystrophy (EDMD) is a genetic condition that affects both movement and heart function. Signs often appear in childhood, with joint stiffness being an early feature. Click to find out more.

Article

August 29, 2025

Distal muscular dystrophy/distal myopathy (DD)

First described in 1902, distal muscular dystrophy mainly affects the muscles furthest from the centre of the body, such as the hands, arms, lower legs and feet. Click to find out more.

Article

August 29, 2025

Congenital myopathies (CM)

There are several types of congenital myopathies, including central core, centronuclear, myotubular, congenital fibre-type disproportion, multi mini-core and nemaline myopathy. Click to find out more.

Article

August 29, 2025

Congenital muscular dystrophy (CMD)

Learn more about Congenital muscular dystrophy (CMD) and the support available for individuals and families.

Article

August 29, 2025

Charcot-Marie-Tooth disease (CMT)

Charcot-Marie-Tooth disease (CMT) causes degeneration of peripheral nerves, leading to progressive muscle weakness, often affecting the hands, feet, legs and arms. Click to find out more.

Article

August 29, 2025

Becker muscular dystrophy

Becker muscular dystrophy (BMD) is a neuromuscular condition that causes progressive muscle weakness and can affect the heart. Cardiac issues are common in this condition. Click to find out more.

Article

August 29, 2025

Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common type of muscular dystrophy in children. Early signs may include delayed motor development, difficulty keeping up with other children or walking differences such as toe-walking or a waddling gait. Click to find out more.

Article

August 29, 2025

FSHD Research & Cure FSHD Clinical Trial Passport Update – Community Information Session

Emma Weatherley, Managing Director of FSHD Global Research Foundation, presents the latest updates on clinical research and international advancements in facioscapulohumeral muscular dystrophy (FSHD), including the development of the Cure FSHD Clinical Trial Passport.

Article

August 29, 2025

BiPAP & CPAP Sleep Therapy in Myotonic Dystrophy – Community Information Session

Sleep and respiratory scientist and PhD candidate Alexandra Childs presents on the use of CPAP and BiPAP sleep therapy in people living with myotonic dystrophy (DM), featuring a live case study of MDQ client Noni Thomas.

Article

August 21, 2025

ADAPT-CMD Research – Community Information Session

MDQ Neuromuscular Medical Research Seminar – ADAPT-CMD Recorded 27 May 2025 at Logan Entertainment Centre, this session features NMDB and ADAPT-CMD experts discussing biobank purpose, recruitment, research impact and patient advocacy in muscle disease research.

Article

August 21, 2025

Myotonic Community Information Day – Community Information Session

Dr Robert Henderson, Neurology specialist and Associate Professor, presented to MDQ clients in 2023 on myotonic muscular dystrophy, its management and care.

Article

August 21, 2025

What to Look for in a Mobility Aid – Community Information Session

This session is presented by former Senior Physiotherapist, Janine Anderson, and provides a comprehensive overview of mobility aids for people living with neuromuscular conditions.

Article

August 21, 2025

Exercise for Neuromuscular Conditions – Community Information Session

This session is presented by our Senior Physiotherapist, Lisa-Maree Harrison and covers general information on the benefits of exercise, types of exercise, and how they can be applied to support people with neuromuscular conditions.

Article

August 15, 2025

Safety in the Home – Community Information Session

This session is presented by MDQ former Occupational Therapist Emma Larwill and covers information on home safety, the role of an Occupational Therapist in maximising home safety, supportive decision making and safety with transfers.

Article

August 15, 2025

Managing Pain and Fatigue – Community Information Session

This presentation from 2022 covers pain and fatigue in neuromuscular conditions, their causes, and management strategies including physiotherapy, pacing and energy conservation.

Article

August 15, 2025

FSHD Seminar – Community Information Session

FSHD clinical trials explore new therapies targeting DUX4 and muscle regeneration. This update covers trial participation, readiness, ongoing research, and patient guidance. (March 2024)

External Website

August 15, 2025

Managing Fatigue in People with Muscular Dystrophy – Article

Fatigue is a significant challenge for people living with muscular dystrophy and other neuromuscular conditions, impacting daily activities, independence and social participation. Read this article to learn more about how these conditions affect energy levels and strategies to manage fatigue for a better quality of life.

Article

August 15, 2025

How Muscular Dystrophy Affects Sleep – Article

This article explores the many ways muscular dystrophy and other neuromuscular conditions can affect sleep, from pain and fatigue to breathing difficulties and disrupted rest. It also highlights practical strategies and targeted sleep management approaches that can help reduce these impacts, supporting better health and overall wellbeing.

Article

August 15, 2025

Disability Employment Services

Services that can help you find and keep a job if you have a disability, illness or injury.

External Website

August 15, 2025

Job Access

JobAccess is the national hub for workplace and employment information for people with disability, employers and service providers.

Article

August 15, 2025

Queensland Powerchair Football Association

The Queensland Powerchair Football Association (QPFA) is a not-for-profit organisation dedicated to providing people with disabilities the opportunity to participate in team sports.

External Website

August 15, 2025

Boccia Australia

Boccia Australia is the national body for boccia, a Paralympic precision ball sport for athletes with physical disabilities, offering clubs, events and support.

External Website

August 15, 2025

Disability Sports Australia

Disability Sports Australia (DSA) is one of Australia’s National Sporting Organisations for people with a disability (NSODs) and aims to improve the lives of Australians living with disability using sport as the medium.

External Website

August 15, 2025

Queensland Powerchair Football Association

The Queensland Powerchair Football Association (QPFA) offers individuals with disabilities the chance to participate in team sports.

External Website

August 15, 2025

Medical News Today (USA)

A commercial medical news web site with up-to-date news on research related to muscular dystrophy, amyotrophic lateral sclerosis (ALS), Lou Gehrig’s Disease and muscular atrophy.

External Website

August 15, 2025

AFM-Téléthon (France)

The French Muscular Dystrophy Association’s news page is available in English. AFM-Téléthon, one of the world’s largest and most active MD organisations, raised over €100 million in its 2008 national Telethon. The funds support research and development of treatments and therapies for muscular dystrophy.

External Website

August 15, 2025

MedlinePlus

MedlinePlus is an online health information resource for patients and their families and friends. It is a service of the National Library of Medicine (NLM), the world's largest medical library, which is part of the National Institutes of Health (NIH).

External Website

August 15, 2025

Muscular Dystrophy News (USA)

Muscular Dystrophy News is a US-based online publication providing comprehensive daily coverage of MD.

External Website

August 15, 2025

Muscular Dystrophy Association (USA)

The Muscular Dystrophy Association USA’s research news page offers archives spanning more than ten years. Founded in 1950 by a group of families, the organisation has a long history of supporting the community.

External Website

August 15, 2025

TREAT-NMD (Europe)

TREAT-NMD is a European network connecting people with neuromuscular diseases to specialists and organisations developing treatments. It offers valuable information and showcases Europe’s strong research efforts in this field.

External Website

August 15, 2025

Muscular Dystrophy UK

An up-to-date and well-curated website offering key breaking news and details on research and clinical trials in the UK and globally. Muscular Dystrophy UK is the leading MD organisation in the UK.

External Website

August 15, 2025

Perron Institute for Neurological and Translational Sciences

News and research articles from Western Australia’s longest established medical research institute, located in the Queen Elizabeth II Medical Centre site at Nedlands in Perth.

External Website

August 15, 2025

Neuromuscular WA

Neuromuscular WA aims to improve the quality of life for people living with neuromuscular conditions in Western Australia and to be the first choice for support and services.

External Website

August 15, 2025

Muscular Dystrophy NSW

Muscular Dystrophy NSW supports people living with muscular dystrophy and other neuromuscular conditions across New South Wales.

External Website

August 15, 2025

Capital Region Muscular Dystrophy

Capital Region Muscular Dystrophy is a not for profit, registered charity for anyone with one of the many forms of muscular dystrophy, their families and carers in the Canberra region.

External Website

August 15, 2025

Muscular Dystrophy Tasmania

Muscular Dystrophy Tasmania supports Tasmanian families living with muscular dystrophy and allied neuromuscular conditions.

External Website

August 15, 2025

Muscular Dystrophy Foundation Australia

Muscular Dystrophy Foundation Australia (MDFA) is the national peak body representing Muscular Dystrophy and other Neuromuscular conditions.

External Website

August 15, 2025

Australian Neuromuscular Disease Registry

The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with a neuromuscular disease.

External Website

August 15, 2025

Queensland Disability Advisory Council

The Queensland Disability Advisory Council is a key channel for independent advice to the Minister on a range of disability and related matters that affect the broader community.

External Website

August 15, 2025

Carer Gateway

Carer Gateway, connects carers with an Australia-wide network of Carer Gateway service providers.

External Website

August 15, 2025

Queensland Advocacy for Inclusion

QAI are an independent organisation that advocates for the protection and advancement of the needs, rights and lives of people with disability in Queensland.

External Website

August 15, 2025

Disability Gateway

The Disability Gateway is a portal of information and services to help people living with disabilities, their family, friends and carers.

External Website

August 15, 2025

Relationships Australia Queensland

Queensland’s leading support for relationship wellbeing, Relationships QLD provide information, education and resources that help us enjoy healthy, positive relationships.

External Website

August 15, 2025

Emergency Services

You can call the emergency services if someone is seriously injured or in need of urgent medical help, if your life or property is being threatened, or if you have just witnessed a serious accident or crime.

External Website

August 15, 2025

Lifeline

Lifeline is a national charity that provides 24-hour crisis support to those dealing with a personal crisis.

External Website

August 15, 2025

Beyond Blue

Beyond Blue provides a free online and telephone helpline for people with mental health concerns.

External Website