Bone health in muscular dystrophy – discovering novel treatment strategies

About the Project and the Involvement Opportunity

Muscular dystrophy is an umbrella term that includes a wide range of genetic diseases causing progressive muscle weakness, wasting, and loss of function over time. Bone and muscle are anatomical neighbours – in recent years more evidence is emerging to suggest bone and muscle communicate with each other, hence the health of muscle is supported by muscle, and vice versa. Patients with muscular dystrophy often take medications (e.g., glucocorticoids), exhibit dysfunctional muscles and can potentially experience the ability to walk, all of which impact bone health. Understanding the interplay between bone and muscle is critical in understanding muscular dystrophy as well as discovering novel treatments to support overall musculoskeletal health.

We are interested in exploring bone-muscle interplay in the following dystrophies:

Duchenne,
Facioscapulohumeral and
Dysferlinopathy

As researchers it is important for us to bridge the gap between discovery science, healthcare, medical innovations and societal structures, to ultimately understand what is best for consumer and community. Here we aim to gain understanding whether people with muscular dystrophy are concerned about their bone health and how their bone and muscle may communicate with or support one another.

About the Position

The consumer’s role is to provide insights into their own or their child’s lived experience of bone health in muscular dystrophy, for example, determining if any consideration has been given to bone health as muscle issues progress, whether consumers are aware of the interplay between bone and muscle and gaining an insight into whether or not consumers experience any anxiety around bone related issues e.g., fall and fracture risk.

By providing firsthand feedback, consumers with a lived experience can reveal unmet needs and real-world challenges that may not surface through clinical or technical evaluations alone. This perspective is essential to the research process, helping scientists shape experimental design and create meaningful goals that address the musculoskeletal problems consumers may experience.

What Am I Expected to Do?

Attend regular meetings with the research team (e.g., monthly or quarterly)
Review documents (e.g., grant applications, consent forms, surveys)
Share your lived experience and insights

What Skills or Experience Do I Need?

Consumers should bring relevant lived experience with muscular dystrophy and the capacity to contribute meaningfully to a collaborative research process.

Ideally, participants will:

Have lived experience as a patient or as a parent/carer of someone living with muscular dystrophy, preferably either Duchenne, facioscapulohumeral or dysferlinopathy. This experience allows participants to offer valuable, context-specific insights into existing treatment challenges and care needs.
Be comfortable participating in small group discussions, including sharing personal viewpoints, engaging with others’ perspectives, and contributing constructively to guided conversations.
Have familiarity with online communication platforms such as Zoom or Microsoft Teams to support effective participation in virtual meetings and workshops.

How Long Am I Expected to Be Involved?

We hope to find a Research Buddy who will be involved during the initial stages of this project, which could span a few years. However, initially, meetings will be set for approximately 1 hour, quarterly for 1 year. Occasional emails (or correspondence of your preference, e.g., phone call) may be sent between meetings.

Participation is flexible and can be adjusted to suit your availability.

Where Will Meetings Be Held?

Online via Zoom (or other video call application)
In person at the University of Western Australia, Anatomy Building (venue may change depending on room availability)
A mix of in-person and online, depending on consumer preference

What Support Is Offered?

An honorarium of $50.00 per hour is available for consumer involvement activities in line with CCIProgram guidelines
Training and support provided by the CCIProgram or relevant support body.

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