Wednesday, 4 March 2020
Duchenne Muscular Dystrophy
I want to raise in the parliament today the matter of Duchenne Muscular Dystrophy, a terrible condition which impacts on too many young men. Sunday before last, I attended the New South Wales Community Walk 4 Duchenne with the member for Macarthur, Mike Freelander, Senator Deb O'Neill and a range of state members of parliament including Sophie Cotsis and Jihad Dibb. It was a great day and it was important to raise the profile of muscular dystrophy, Duchenne in particular, and we need to do so in this parliament as well.
Duchenne is a type of severe muscular dystrophy which begins very young in man's life and can be diagnosed very early but as an increased impact as the young plan develops and grows. Boys with Duchenne muscular dystrophy generally, sadly, are not expected to live past their 20s. They can live into their 30s with the very best medical care but they are not generally expected to live past their 20s. They know about this through their life and they know about it from a very early age. It's the most common fatal genetic disorder diagnosed in childhood, impacting on approximately one in every 5,000 male births, with about 20,000 new cases each year worldwide.
At the walk I spent time with Ollie; Ollie is a friend of mine. He's nine years old. He was diagnosed with Duchenne at the age of 10 weeks. He of course is dealing with this condition, and his family is making a big contribution. They've started a charity, HopeforOllie. His dad, Tim McPhail, and his mum, Trish McPhail, run the charity, which provides children's clothing and accessories, and the profits go to the clinical trials undertaken at Westmead Children's Hospital, which is a very important initiative.
The Community Walk 4 Duchenne, which was led by Elie Eid, who very famously walked to Canberra with his son Emilio to raise the profile of Duchenne, was an important day. I want to, as member for McMahon and shadow minister for health, thank all those involved in the Save Our Sons Duchenne Foundation. The sponsors of the event included Chemist Warehouse, which should be acknowledged as they play a good role, and St John's Ambulance, who supplied the support and first aid on the day of the event, which should also be acknowledged, as they do across many events.
Duchenne is a terrible condition, one of the many rare conditions facing Australians. But what honourable members might not realise is that there are more than 7,000 rare conditions in Australia which actually, when they add up, impact on millions of Australians. Rare diseases are actually not rare enough because, in and of themselves, they might impact on a very small number of people but when you add them up they impact on many. It's very difficult for rare conditions to get the attention for research funding. They need more research funding. They have my attention and I hope the attention of the parliament.