Australia’s youngest Duchenne Muscular Dystrophy organization was launched on World Duchenne Awareness Day 2020. Founded by the Duchenne community, all Board members have a family member with Duchenne. From March on, they are joining the World Duchenne Organization and worldwide community.
Their two Founding Directors Klair Bayley and Michael Simpson both are having sons with Duchenne. Klair is a qualified nurse and midwife for 25 years-experience and is a member of the community in Australia. She became internationally involved in 2007 when her middle son Logan was diagnosed with Duchenne. Logan is now 19. Michael works in the mental health sector in Western Australia. His eldest son Harry now 8 is having Duchenne.
Duchenne Australia’s Mission is to provide education and support with a strong focus on mental health and resilience for families and those living with Duchenne.
“Duchenne Australia will collaborate to achieve our goal for a cure for all, while inspiring hope. Our key role moving forward is to create a better future for those living with Duchenne or associated dystrophinopathies across Australia. We do so by advocating to ensure there is access to evidence-based care for all and the best possible quality of life, while advocacy for emerging therapies, research and clinical trials.” – Founding Director Klair Bayley
Duchenne Australia focus on 4 key pillars to achieve the goals for the community:
- Care and support
- Awareness and education
- Research and data
- Advocacy and collaboration
National and international advocacy
As members of the World Duchenne Organization, Duchenne Australia is continuing their national and international advocacy. They do so by working together to share the Australian experience and data alongside community stories to inform decision makers, payers, research and industry. “We are working towards a common goal for accessible therapies for all. We do this by assisting the international Duchenne and rare disease community. Our goal is also to have information, education, resources and advocacy to assist them to reach their goals for our global community.”