Muscular Dystrophy Association of NSW

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” — Four Corners, 15th February at 8.30 pm on ABC TV

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.

Inaugural MDNSW Camp a real treat!

colingunn — Wed, 21 Oct 2009 22:50:42 +0000

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!

To view all the fun photos of Camp 2009 go to picasaweb.google.com.au/mdnsw.org.au.

Renee McBryde, MDNSW Client Service Manager, reports…

The premier MDNSW Camp exceeded all the expectations we could ever have had for our first camp!

It was held at the Sydney Academy of Sport & Recreation at Narrabeen on Sydney’s northern beaches the week of 5 October 2009.

The week went by in a whirlwind of fun, friendship and laughter and was over all too soon for campers, carers and staff alike.

Throughout the week we handled crocodiles, played wheelchair sports, made slime, blew things up, had very scary Halloween transformations - and a wicked Halloween party!

We sang our hearts out at karaoke and made kites (that really flew).

And most importantly we made lots of great friends and left with great memories.

Here is what some of our campers and carers had to say about camp:

“Thanks for organising such a wonderful camp - can’t wait for next year!”

“Thank you for all the great activities at camp - especially wheelchair sports!”

“Camp was a truly amazing experience - thank you!”

“Thanks for letting me and my brother come on this cool camp!”

More Camps to Come

A very welcome visitor to the Camp was Paul Lynch, NSW Minister for Disability Services.

The Minister confirmed the NSW Government’s generous pledge of $300,000 to support the running of the Camps for three years.

To read the Manly Daily’s report on the Minister’s visit please click here.

Here at MDNSW we’re already planning next year’s camp which will be held on the 27th September - 1st October 2010.

See you there in 2010!

Motown in Mudgee, 7 November 2009

colingunn — Tue, 20 Oct 2009 08:12:27 +0000

Don’t miss this outstanding musical event featuring the incredible James Morrison this coming weekend.

Motown in Mudgee will be held on Saturday, 7 November 2009 at beautiful Gooree Park in Mudgee, one of the NSW’s great wine regions.

All funds raised will go to Muscular Dystrophy Foundation Australia.

Tickets can be purchased online at www.gooreepark.com.au. Or download, complete and return an order form. Or call Gooree Park on (02) 6378 1800.

See below for details or download a copy of the Motown in Mudgee flyer here.

Jerry wows us all and vows all his support

colingunn — Tue, 22 Sep 2009 07:00:43 +0000

Jerry Lewis has wowed his audiences and vowed his total commitment to lead support for muscular dystrophy in Australia.

In a whirlwind week of special events and media appearances in Sydney, Jerry worked his magic as a legendary entertainer and leading muscular dystrophy advocate, using his compelling combination of humour, charm, passion and determination to forge new friendships, new alliances and new support for muscular dystrophy in Australia.

Throughout the week Jerry was supported by a brilliant line up of leading entertainers and comedians including Peter Berner, David Campbell, Kitty Flanagan, Tom Gleeson, Paul McDermott, Julie Morris, Fiona O’Loughlin, Carl Riseley, Mikey Robins, Leo Sayer and Mark Spano.

Only a day after his arrival Jerry stunned, delighted and energised the Australian muscular dystrophy community by pledging through the national media his total commitment to work with Muscular Dystrophy Foundation Australia to achieve here what he has achieved in the USA.

“I would love to do here in seven days what I did in 58 years [in the USA] but the point is it has to begin,” Jerry said.

Jerry’s Annual MDA Telethon in the US has raised over US$60 million in each of the last two years, and since its inception in the 1960s has raised US$2.4 billion - that’s with a ‘b’, he says with a big grin.

Jerry announced that he plans to return to Australia in 2011 to stage a muscular dystrophy telethon as extravagant and successful as its US counterpart. He acknowledges this will depend on getting support from Australian television networks, but says he’ll put all his resources into making it happen.

“I have a hunch we’re going to pull it off [here in Australia],” Jerry said.

The week started with a “Special Afternoon with Jerry Lewis” at Star City in Sydney. (Pressure of time meant that Jerry wasn’t able to travel further in Australia on this trip.) Mums, dads, kids and carers were all treated to hours of fun and laughter with the king of comedy showing clips from his favourite movies and shows.

Jerry’s Aussie kids, young and old, were in fits of laughter watching the zany antics of the guy on screen (the younger ones probably for the first time) with the man himself following up with more great jokes and quick repartee.

Keen to talk with everyone in the room and hear stories of their lives and answer the many questions there were about his, Jerry not only recounted amazing tales of his life as a star of stage and screen, but also revealed his deep commitment to muscular dystrophy.

Jerry’s deep humanity and compassion filled the room with inspiration and much encouragement.

At another three fantastic functions at Star City, Jerry went on to entertain and inspire hundreds of committed muscular dystrophy supporters who came from all around Australia to get ‘up close and personal’ with this remarkable man.

Jerry was supported at the Star City events by marvellous musical performances from Leo Sayer, David Campbell, Mark Spano and Carl Riseley.

TV personalities Jaynie Seal (Channel 9 Weather), Mark Beretta (Channel 7 Sunrise) and Kellie Connolly (Channel 9 Today) kept things moving as accomplished and gracious MCs of the events.

The grand finale to the week was a spectacular show at Sydney’s Enmore Theatre featuring Jerry, his 24 piece orchestra and the royalty of Australian comedy.

A packed house of more than 1200 people was “laughing for life” as Jerry and his Australian co-stars Peter Berner, Kitty Flanagan, Tom Gleeson, Paul McDermott, Julie Morris, Fiona O’Loughlin and Mikey Robins worked their brilliant comic magic.

For all the laughter and all the fun, Jerry was intent on getting a more serious message across.

“If you make people laugh, I have found that they become very available to thinking good stuff,” Jerry had said before the show.

“I’m going to make them aware that they have an enemy [muscular dystrophy] in their midst and I’ve come to do something about it.”

Jerry also had a special message for the muscular dystrophy community of Australia.

“You’ve got to go national and you’ve got to be united if you want to be successful,” he said.

For representatives, members and supporters of MD associations from New South Wales, Queensland, South Australia, Tasmania and Northern Territory all participating in this wonderful week of events, hearing this from Jerry reinforced their commitment to continue to work together to fulfil the mission of Muscular Dystrophy Foundation Australia of creating a cohesive, integrated and collaborative Australian MD community.

“We can’t thank Jerry enough for coming all the way here to support us, and we can’t wait to see him back here to head up a TV entertainment extravaganza”, MDF Australia CEO David Jack said.

“We deeply appreciate the great generosity and true friendship Jerry has shown us.

“With new support and awareness already building from Jerry’s time here, we at MDF Australia will do everything possible to ensure the momentum continues.

“I hope we will look back on this week as the beginning of a united and vibrant era for MD in Australia, inspired and supported by a man who has spent almost all his adult life leading the charge to improve the lives of people affected by muscular dystrophy”, David Jack said.

HOG Picnic Day just keeps getting better!

colingunn — Sun, 13 Sep 2009 01:00:03 +0000

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

For lots of great photos of the day check out
picasaweb.google.com.au/mdnsw.org.au.

Zorba (Todd Le-Grand, Secretary of HOG NSW) reports…

As one of the key organisers for the annual MD-HOG Picnic Day it gives me great pleasure to be able to give the MD community an insight of what it means for the HOG members.

It was in the year 2007 that I first attended this day out at Warragamba as a fairly new member of the New South Wales HOG Chapter, the day was explained to the members as just a fun day to help raise money in support of MD NSW. This was for my partner and I a real eye opener as to how important a day like this really is. Although this day was attended by only about 50 people including MD and HOG members alike it was still a very touching day.

The following year was the first for me as the Activities Officer for the NSW HOG Chapter which meant that I could add a little something to all the chapter events including the MD Picnic Day.

The HOG committee really wanted to bring new life to the MD day and worked in conjunction with MDNSW to find out what sort of day they wanted this event to be, and after a number of discussions the new format was born. This format would include the starting convoy from Fraser Motorcycles to Warragamba which allowed for a longer journey on the back of the Harley for anyone that was up to the trip as well as give everybody the feeling of being a part of something pretty awesome as they travelled down the M4 motorway.

The 2008 day saw the numbers rise from 50 in total to over 200 which were made up of about 80 from MD and 120 from HOG chapters around the Sydney area. This gave those involved in putting this day together a feeling of success and let them know that we were back on the right track to organising a great day out for all those who attend.

This brings me to this year’s event, which again was very well co-ordinated by both MDNSW and NSW HOG Chapter, and which saw attendance grow to over 350 people made up of 160 from MD and about 200 HOG members from around NSW.

We again had the convoy leaving from Fraser’s at Concord which saw 163 Harley’s and 7 Trikes ready to take pillions and make their way to Warragamba in what would only be described as one “hell of a convoy” down the M4.

Once the convoy arrived at Warragamba they were entertained for the day by the boys from Servinitup Australia (check out their work at www.servinitup.com) doing their amazing stunts on those motorbikes as well as Airbrush Tattooing for anybody who wanted some “tuff stickers” for the day, and of course the culinary delights of spit roast beef with salads and cold drinks all laid out for everyone to enjoy. There were also rides provided on the back of a Harley or a Trike as well as plenty of prizes up for grabs in the raffle.

Due to the success of this year’s event I can tell you that it gives us great pleasure to be able to share our passion with the folks from MD whilst at the same time give support both monetary as well as socially. Whilst a lot of hard work and planning goes into this day it is made worthy by the attendance of everyone on the day.

I am also happy to be able to inform the members of MD that we have already been working towards an even bigger day for 2010, and I would like to encourage any type of feedback from those that attended this year’s event so as to improve the day next year.

If you would like to comment on the day please forward those comments to me (the Secretary) via our website www.nswhog.com.au and we will do our very best to implement those things.

Todd Le-Grand (Zorba)
Secretary, New South Wales Chapter
Harley Owners Group (HOG)

Nutrition Seminar Goes Down Well

colingunn — Wed, 02 Sep 2009 11:37:02 +0000

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

MDNSW Medical Director, Dr Heather Johnston invited a team of excellent speakers and hosted a much appreciated afternoon of presentation, discussion and socialising.

The seminar was held at Meadowbank on Saturday, 29 August 2009.

If you would like copies of the PowerPoint presentations from the seminar you can download the PDF versions below.

Eating & Beyond - My Story by Michael Baptiste

Gastrostomy Explained to Parents (part 1)

Gastrostomy Explained to Parents (part 2)

What’ s Good for You

If you are interested in a DVD of the seminar please contact Renee by phone 02 9809 2111 or email Renee.McBryde@mdnsw.org.au.