Muscular Dystrophy Association of NSW

Tour Duchenne Fundraising Night

rscelly — Tue, 03 Aug 2010 07:03:04 +0000

Strap on your helmets for a fun evening on Friday 20th August.

Inspirational Jerry Wows Australia

rscelly — Fri, 30 Jul 2010 00:37:38 +0000

International Patron for Muscular Dystrophy Foundation, Jerry Lewis visited Australia in June. While he was here, Jerry appeared at numerous functions, visited with influential people and inspired all who he encountered.

From appearing on stage and entertaining large crowds, to sharing personal stories with small groups of people, Jerry Lewis knows how to get his message across and speak to your heart. Many people were moved at the large function at Docklands in Melbourne, and again at the Property Council dinner in Sydney.

Jerry’s message is clear, money is needed for research, education, awareness and support services about neuromuscular conditions and an Australian telethon in 2012 is a way to achieve all three goals.

Watching games of AFL in Melbourne and Sydney were highlights for the sport-loving Jerry Lewis. His very funny comedy was appreciated by players and officials before the games.

Jerry met with firefighters in both Sydney and Melbourne to gain their support for a future event and Muscular Dystrophy Foundation looks forward to working alongside the firefighters.

Jerry has made a commitment to Muscular Dystrophy Foundation Australia and he will be back to continue with the enormous job of raising money for the many Australians affected by muscular dystrophy and other neuromuscular conditions.

2010 HOGs Day

rscelly — Fri, 30 Jul 2010 00:30:00 +0000

National Electric Wheelchair Sports 2010

colingunn — Wed, 31 Mar 2010 23:45:46 +0000

N.E.W.S. has kicked off for 2010, featuring competition between teams from around Australia in hockey, soccer and rugby league.

The competition has started at the Sydney Academy of Sport & Recreation. Round robin competitions to select finalists in hockey, rugby league and soccer take place on Tuesday, Wednesday and Thursday respectively.

The top teams will battle it out in the finals for all three sports on Saturday 20 April.

To download the N.E.W.S. 2010 Calendar of Events please click here.

To download the N.E.W.S. 2010 Fixtures please click here.

Tour Duchenne Needs Your Support

colingunn — Fri, 19 Mar 2010 05:26:29 +0000

Muscular Dystrophy Foundation Australia is pleased to bring you the 2010 Tour Duchenne.

Tour Duchenne is an annual cycling event raising money and awareness for Muscular Dystrophy. Cyclists will start from either Melbourne, Brisbane or Adelaide and cycle all the way to Sydney. The event will take place from September 10th to 19th.

This year we are aiming to raise $1.5 million. Of the total amount we raise, 70% will go to research of Duchenne Muscular Dystrophy and 30% will go to State based programmes and support of people with a neuromuscular condition.

We still have places left in each leg of the ride so if you are a keen cyclist, or know someone who is a keen cyclist, then please email us at rebecca.scelly@mdnsw.org.au.

If you can’t participate but are still interested in helping out, then please visit www.tourduchenne.com, pick a rider and make a donation. Our very own CEO, David Jack is committed to cycling the Brisbane to Sydney leg, so look out for his profile on the Tour Duchenne website, and help him reach his individual goal of $25,000. To donate straight towards Davids total, please go to: www.everydayhero.com.au/david_jack.

We are also looking for a large number of sponsors to sponsor individual riders and the event as a whole, so if you have a business, or know someone in business who might be interested in a sponsorship arrangement, please email rebecca.scelly@mdnsw.org.au.

Thank you very much for your interest and if you have any questions, please don’t hesitate to contact me.

Kind regards,

Rebecca Scelly

Fundraising Manager

Member feedback for Government enquiry

mdnsw — Sun, 21 Feb 2010 22:26:26 +0000

The Government has recently requested submissions into an enquiry into the provision of education for students with a disability or special needs. Muscular Dystrophy NSW sought member feedback regarding this submission through an online survey. We received a large number of responses and collated the information into the final document.

Thank you for your responses and comments, they were all very useful. Please follow the link to read the full submission. mdnsw-submission-inquiry-into-education

“Breaking Point” on ABC Four Corners

colingunn — Mon, 15 Feb 2010 21:49:06 +0000

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. http://abc.net.au/4corners 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

colingunn — Tue, 15 Dec 2009 07:18:02 +0000

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

“Towards a Brighter Future” will be held at the University of Sydney, 26-27 February 2010.

The vision for the conference is to ensure that patients and their families have access to early and accurate diagnosis, create awareness of progress in prevention and management and present interventions to enhance quality of life for all affected individuals.

The conference aims to:

Deliver up-to-date research on neuromuscular disorders
Provide information about all neuromuscular conditions to health professionals (doctors, allied health and nursing), educators (teachers, teacher’s aides and special needs educators), parents and affected persons.
Deliver a stimulating and progressive conference program tht disseminates only the most up to date research in the field of neuromuscular conditions.

Whilst there is no “one size fits all” miracle cure for each disorder, the future is going to be much better for many of our children. We know that world standards of care are changing every year via new drug therapies, practices and research findings and it is critical that we keep abreast of new information.

For the conference brochure click here.

For an overview of the conference program click here.

To visit the conference web site click here.

Invitation to a Feast of Rock ‘n’ Roll

colingunn — Tue, 03 Nov 2009 00:50:50 +0000

Time’s fast running out to book a phenomenal night of dinner and dancing to great rock ‘n’ roll music on the shores of Sydney Harbour.

Click here to get your invitation and RSVP by Friday, November 13!

Muscular Dystrophy Association of NSW - Constitution

admin — Mon, 26 Oct 2009 04:18:29 +0000

The documents below are in PDF format and can be downloaded by clicking on the relevant line.

To view the PDF documents you will need Adobe Reader which can be downloaded here.