Media Release by Senator the Hon Jan McLucas

Supporting children with Muscular Dystrophy

More than 120 children with muscular dystrophy will attend respite camps this year thanks to the Gillard Government.

As part of Duchenne Muscular Dystrophy Awareness Week, Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas announced a $46,000 boost to Muscular Dystrophy Australia to give more children the opportunity to attend week-long respite camps.

“This practical support will make a real difference to children with muscular dystrophy,” Senator McLucas said.

“The respite camps provide opportunities for children to make new friends, and share in a range of indoor and outdoor activities.

“They also give carers an opportunity to have some much-needed down time.”

Funding for the camps is provided through the Gillard Government’s Respite Support for Carers of Young People with Severe and Profound Disability program.

“Duchenne Muscular Dystrophy Awareness Week raises awareness of this degenerative genetic disorder that is the most common fatal genetic disorder in children, affecting around one in every 3,500 children,” Senator McLucas said.

“The vast majority of those affected are boys, and tragically, these children rarely live longer than their parents.”

The Australian Government previously provided more than $110,000 to Muscular Dystrophy Australia to develop a web portal, a resource dedicated to Duchenne Muscular Dystrophy.

“The portal gives health professionals, consumer organisations, families and carers the best available information and resources to deal with the medical, paramedical and psychosocial care of a child with muscular dystrophy from birth to adulthood,” Senator McLucas said.

The Australian Government is working towards a future where all Australian children and adults with disability lead lives of dignity and opportunity.

“We are providing $1 billion to deliver the first stage of the National Disability Insurance Scheme (NDIS) to provide Australians with a disability the care and support they need, when they need it,” Senator McLucas said.