In an Australian first, children with muscular dystrophy will be able to take part in an international clinical research program at The Royal Children’s Hospital in Melbourne.

On Sunday 29th August the hospital’s Department of Neurology launched its research partnership with the Cooperative International Neuromuscular Research Group (CINRG).  CINRG is a world-wide cooperative group out of Washington DC looking at treatments for muscular dystrophies, particularly Duchenne Muscular Dystrophy (DMD).   RCH is currently the only active CINRG centre in the Asia-pacific region

DMD affects boys and occurs in 1 in 3500 births.  They are initially well and develop weakness around 2-3 years of age.  Rapid deterioration of muscle strength results in the child being in a wheelchair by 8 years of age.  Sufferers usually die in their late teens or twenties.  There is no cure and very few treatments.

DMD sufferers Angus McMahon and Brendan Strongman attended the launch.

Angus is five years old and knows he has sick muscles.  He’s in prep at school, and tries hard to keep up with his classmates, but he’s not as fast as the others, and is a little awkward on his feet.  He says this is why he’s ‘not one of the cool kids.’  Parents Liz and Michael knew quite early that everything wasn’t right with Angus but DMD wasn’t diagnosed until he was 4 years old.  They had noticed subtle differences like his not liking to run, not walking well or falling over.  Angus has two younger brothers but he can’t ride bikes or climb fences like they do.  Angus will demonstrate for guests at the launch how the state of the art equipment is used in the research project.

Fourteen year old Brendan is was diagnosed with DMD at three years of age when it was obvious he couldn’t run and jump like other children.  He’s in Year 9 and now confined to a wheelchair.  He enjoys high school, playing X-box and watching Essendon play.  There are many things Brendan is now unable to do but he gets lots of support from his younger sister Karla

A videoed message of support was played from former AFL footballer Darren Bennett whose son Will has DMD and is a patient of Prof Kornberg.  The Bennetts now reside in the US.

The relationship between CINRG and RCH is a result of the vision of Associate Professor Andrew Kornberg, director of neurology at RCH, with funding from the Orloff Family Foundation and the Muscular Dystrophy Association of Victoria.  “The RCH will provide cutting edge therapies usually not available outside the United States,” said Professor Kornberg. “Through the use of state of the art technologies, we will investigate the most promising treatments for the Duchenne Muscular Dystrophy and related neuromuscular disorders.”

Media enquiries: Julie Webber  9345 5130

This event received coverage in

• The Age
• The Herald Sun
• The Maitland Mercury NSW
• The Examiner Tasmania
• Townesville Bulletin NT
• Channel 9, 10, 2, 7 around Australia