Save Our Sons brings Duchenne community’s voice to NSW Parliament

Save Our Sons Duchenne Foundation has joined the rare disease community at NSW Parliament House for an event focused on strengthening connections and improving support for people living with genetic conditions.

The Genetic Alliance Australia Annual Forum, held on 16 September, included a Community, Research and Advocacy Showcase highlighting the work of organisations seeking better outcomes for individuals and families.

Save Our Sons Treasurer Miled Akle, who attended the event, said it provided an important opportunity to raise awareness of Duchenne muscular dystrophy and the needs of those affected.

“Families living with Duchenne need to know their voices are being heard, and their experiences are helping shape decisions about care and support,” Mr Akle said.

“Events like this create valuable opportunities to build relationships, share knowledge and work together to improve the lives of people living with rare and genetic conditions.”

The forum’s theme, “Stronger Together: Connection, Collaboration, Care”, highlighted the importance of closer links between communities, health services, researchers and policymakers.

Mr Akle said collaboration was essential to achieving practical improvements for the Duchenne community.

“Our focus is on better care, stronger support for families and progress towards effective treatments and ultimately a cure,” he said.

“We want people living with Duchenne to have access to the support they need at every stage of life, and for families to have a meaningful say in how that support is delivered.

“By working alongside other organisations, we can build a stronger collective voice and keep the needs of our community firmly on the agenda.”

Mr Akle thanked Genetic Alliance Australia for bringing the sector together.

“I also had the pleasure of meeting the NSW Shadow Minister for Medical Research Justin Clancy and discussing the critical issues facing our community.”