Archives for the "Features" Category

2013 Christmas Appeal

Last modified on 16 Jan 2014 12:18 am

Donate to our Christmas Appeal

Help us light up more kids faces in 2014 by sending your tax deductible donation today to MDNSW.

Thank you City 2 Surf team MDNSW

Last modified on 25 Jun 2012 10:56 am

Thank you Daniel Ng, Vicki Sciulli, Liana Lorenzato, Philip Colvin, Myra Maric and Eleanor Morris!

Randwick City Council

Last modified on 26 May 2012 12:43 pm

A big thank you to Randwick City Council for their generosity towards people with a neuromuscular condition –

Our Duke of Edinburgh's Award Participants

Last modified on 18 Jan 2012 3:45 pm

Read about what some of our Dukies have been doing for their Award, as mentioned in the first National Duke of Ed Newsletter for 2012. Click here to read the article.

She's One In A Billion

Last modified on 14 Dec 2011 12:06 pm

Courageous. Brave. Determined. Yes, this is the definition of Cassie Robson. Click here to read her inspiring story as written in the Newcastle Herald

A Culinary Retreat in Melbourne

Last modified on 10 Dec 2011 11:15 am

Have a sneak-peek at the fabulous result of our final retreat of the year in Melbourne. And with the warm greetings from two famous top chefs Manu and Guy Grossi, it is definitely an unforgettable trip! Click here to read more.

Previous Events

Last modified on 7 Jul 2015 12:02 pm

Join us with our Christmas parties! Ladies’  Luncheon. Friday 25th November 2011 Click here to view details The Hunter Region’s Christmas in the Gardens. Saturday 3rd December 2011. Click here to view details South Coast Christmas Luncheon. Friday 9th December 2011 Click here to view details Sydney Metro Christmas Party. Sunday 11th December 2011 Click […]

Take A Journey With Us!

Last modified on 4 Oct 2011 2:45 pm

Want to know more? Click here to find out what we’re up to!

Young Achiever Winner

Last modified on 28 Jun 2011 10:44 am

Melanie Tran, MDNSW Young Achiever Winner uses Award to further her writing career. Melanie’s award-winning story : “Camellia“ Click here to read about her  from Fairfield Champion News.       

Generous Golf Day Sponsors

Last modified on 11 May 2011 12:05 pm

Muscular Dystrophy NSW would like to send a heart-felt thanks to the very generous companies who have helped to make a wonderful Charity Golf Day event this year.

Bronze at Boccia!

Last modified on 28 Apr 2011 4:49 pm

Inaugural Junior Boccia Titles contested in Avalon

Young Achiever Award

Last modified on 4 Apr 2011 4:48 pm

Applications are now closed for the Muscular Dystrophy NSW Young Achievers Award.

Loose Change Month – April 2011

Last modified on 18 Feb 2011 11:59 am

During April 2011 Muscular Dystrophy NSW is having a Loose Change Month. We are looking for groups of people, usually from a workplace who are keen to make their loose change make a change.

Family Database

Last modified on 13 Dec 2010 5:00 pm

IT HAS been months since Ben Brown could last enjoy his favourite Back to the Future movies.

Member feedback for Government enquiry

Last modified on 22 Feb 2010 9:26 am

The Government has recently requested submissions into an enquiry into the provision of education for students with a disability or special needs.

"Breaking Point” on ABC Four Corners

Last modified on 16 Feb 2010 8:49 am

MEDIA RELEASE February 12th 2010

Hello all,

Please see the press release below for next Monday 15th February FOUR CORNERS program, “Breaking Point”, on ABC TV.
“Breaking Point” — Four Corners, 15th February at 8.30 pm on ABC TV.
This week on Four Corners, “Breaking Point”. The heart-rending story that tells what it’s like to live with a disability, or to care for someone who is disabled, in Australia today. Reporter Wendy Carlisle meets the families the nation has neglected.
The system of assistance for people with a disability in Australia is broken. Carers know it, charitable organisations know it and so do the governments. Now the federal government says something must be done. It’s holding an Inquiry, with the intention of creating a new and fairer system. It’s even considering a national disability insurance scheme. But will the system be reformed in time to save the families now at breaking point?
In Sydney, 65 year old Dick Jones showers his profoundly disabled son Robbie. It’s a task he does willingly but at his age he doesn’t know how long he can keep giving his son the care he needs. He’s been told the only way to get more help would be to abandon his child and leave him in the care of the state.
Amanda Royle’s 9 year old daughter Rosie is deaf and blind, cannot speak, and is intellectually disabled. On her own with two other children to look after, Amanda is in desperate need of assistance that the system cannot provide.
The Nguyen family has twin boys with severe autism. At thirteen they are intellectually disabled and need to wear nappies. Three years ago one of the twins was given a place in a special school. For the family it was a god-send. Now the funds have dried up and the school is threatened with closure.
These families are desperate and they are not alone. Across Australia it’s estimated that there are 1.5 million people with a severe disability. Only a small proportion of them receive any direct physical care from government or charities. The vast majority rely on family and friends to help them survive.
“It doesn’t matter where you look across the sector, across the states of Australia, the system is broken.” Bruce Bonyhady, Independent Panel Member, Productivity Commission Inquiry into a National Disability Support Scheme
The reasons for this situation aren’t hard to find. Thirty years ago governments radically reformed the system of disability care in Australia. They promised to set people free from institutions, and at the same time they promised a major boost in funding so that people with disabilities could be supported to live at home or in community settings. Instead those services have been starved of funds leaving carers, many whom are now in their 60s, 70s, and 80s, to carry the burden. It’s a terrible situation as Dick Jones told Four Corners:
“We were told… the only option you have, is when you are in a wooden box , that’s probably the only time that Rob [his adult son] will get any accommodation.”
The Federal Government accepts the system needs reform and has begun to allocate extra funds for services and carers.
Most significantly, the Federal Government has set up a Productivity Commission Inquiry to recommend systematic reform and the establishment of a comprehensive National Disability Support Scheme. The problem is if the Inquiry recommends a new scheme and the Federal Government agrees to act, even the best estimates suggest real change in Australia would take five to seven years to implement.

“There’ll obviously I think be more meat on the bone for a scheme towards the end of a second term. When the scheme could finally be implemented, I don’t know.” Bill Shorten: Parliamentary Secretary for Disabilities.

For thousands of people this is simply too long to wait. Four Corners reveals the growing number of people who are packing their bags and going to live in countries where the support system is better resourced. These people are being called “disability refugees”. Reporter Wendy Carlisle goes with one young mother to Britain as she investigates the possibility of moving her family back there so her daughter could be better cared for.

While the Government recognises the need for fundamental reform, many families of the disabled are at ‘breaking point’.

BREAKING POINT goes to air on the 15th February at 8.30 pm on ABC1. It is repeated on the 16th February at 11.35pm.
It will also be available online.

A public online forum with some of the people from the story will follow the screening on Monday night starting at 9.30pm AEDST. An invitation is extended to all to join in.

National Neuromuscular Conference 2010

Last modified on 7 Jul 2015 1:26 am

Don’t miss hearing leading Australian and international experts present the latest scientific and medical findings.

Inaugural MDNSW Camp a real treat!

Last modified on 7 Jul 2015 1:30 am

82 campers came from all over NSW to join in the fun and share the adventures. And everyone had such a great time they’re already booking for next year!

HOG Picnic Day just keeps getting better!

Last modified on 13 Sep 2009 12:00 pm

Over 350 people enjoyed the fun, food, friendship and thrills provided by members of the Harley Owners Group at Warragamba Dam.

Nutrition Seminar Goes Down Well

Last modified on 2 Sep 2009 10:37 pm

Food was all the talk for more than 30 people who attended the Nutrition Seminar hosted by MDNSW.

Win-win for Sydney Water team & MDNSW

Last modified on 2 Sep 2009 10:54 am

By meeting its safety targets, the Sydney Water Inner West Civil Delivery Team has safely delivered a great win to MDNSW.

"Livewire is awesome!"

Last modified on 28 Aug 2009 4:57 pm

MDNSW member Kate Hepton highly recommends LiveWire to other young people living with a neuromuscular disorder.

Don't miss MDNSW Camp 2009

Last modified on 21 Aug 2009 8:30 am

It’s not too late to sign up for a week of adventure, fun and friendship in a safe and caring environment at MDNSW October Camp!

MD Merchandise at Best & Less

Last modified on 29 Apr 2009 11:21 am

Best & Less launch their national merchandise campaign in support of muscular dystrophy on 4 May.

Domestic Blitz for Bucco Family

Last modified on 6 Mar 2009 8:29 am

Don’t miss Domestic Blitz on Sunday night, 8 March at 6.30pm. Anthony and Jenny Bucco and their family (members of Muscular Dystrophy NSW) were given a makeover by Domestic Blitz . Tune in for their story. Pictured are Anthony and Jenny Bucco with MDNSW staff.

Tour Duchenne A Success

Last modified on 6 Mar 2009 8:27 am

Dr Josh Burns, researcher at INMR (The Children’s Hospital Westmead) is riding the Tour Duchenne.