It is very pleasing that we are garnering growing support from elected representatives across all three tiers of government from right across Australia. This was evident in the participation of numerous MP’s at our Walk 4 Duchenne events and the Sonday Funday event, as well as the more than 30 meetings with State and Federal MP’s over the past few months. Our advocacy campaign continues to gather steam. We have the attention of key decision-makers and influencers and we intend to be even stronger and effective advocates for you.
Please kindly find below speeches delivered by the Hon. Chris Bowen, MP, the Federal Shadow Minister for Health, in the Commonwealth Parliament, and the Hon. Sophie Cotsis MP, NSW Shadow Minister for Better Public Services, in the NSW Parliament, further raising awareness of our worthy cause and enhancing support for Save Our Sons.
We will keep you informed about our Keynote Report and the Duchenne and Becker specific NDIS Forum, as well as updates on our Parliamentary Advocacy Campaign and community events
Ms SOPHIE COTSIS (Canterbury) (20:13:34):
What a fantastic day it was last Sunday at Save Our Sons Duchenne Foundation community walk at Gough Whitlam Park in Earlwood. The grey weather did not stop hundreds of people from across Sydney walking almost eight kilometres, and raising awareness and funds to help find a cure for Duchenne Muscular Dystrophy.
It was great to be joined by my colleagues Chris Bowen, MP, Senator Deborah O’Neill, Dr Friedlander, Jihad Dib, MP, and councillors Clare Raffan, Karen Pensabene and John Thain as well as representatives from the United Services Union, secretary Graeme Kelly and president Glen McAtear.
Well done to the organisers and founder of Save Our Sons Elie Eid, general manager Michael Galderisi, the sponsors, amazing MCs Rob and Tahir and all the volunteers. We say to Save Our Sons that we are with you, the community is with you and we will work together in a bipartisan way with all our representatives and all our community to ensure that we find a cure for this insidious disease.
Mr CHRIS BOWEN (McMahon) (10:01):
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.