Archives for the "Latest Press" Category
Last modified on 21 Feb 2019 10:55 am
You’re invited to have your say on the kind of online information that would be most useful to you and your family as part part of Muscular Dystrophy Foundation’s National Digital Resource project.
Last modified on 21 Feb 2019 10:55 am
Check out the latest TREAT NMD Newsletter!
The NSW Government will establish a new Ageing and Disability Commissioner to better protect adults with disability
Last modified on 19 Dec 2018 2:32 pm
The Commissioner will be a new, statutory authority that will strengthen Government’s ability to respond to abuse, neglect and exploitation of people with disability and the elderly in home and community settings.
Last modified on 19 Dec 2018 2:25 pm
We love hearing the good news stories as a result of the Spinraza treatment. While the treatment is not a cure, it will provide more time and hope until a cure comes along.
Last modified on 18 Dec 2018 9:39 am
For people who use mobility aids, visiting Australia’s world-famous beaches is sometimes impossible. But there are moves being made to improve accessibility this summer.
Last modified on 18 Dec 2018 9:42 am
Here is some news that broke last month! Funding of $170,000 will be provided to Rare Voices Australia through the Government’s Public Health and Chronic Disease Program to enable the collaborative development of Australia’s first National Rare Diseases Framework and Action Plan
Telecommunication Consumer Group ACCAN launches NDIA-backed telecommunication accessibility information portal
Last modified on 11 Dec 2018 3:25 pm
Telco consumer advocate group Australian Communications Consumer Action Network (ACCAN) has launched a resource portal for telecommunications products suitable for people with disabilities.
Last modified on 11 Dec 2018 3:28 pm
In the lead up to the International Day for People with Disability on December 3 2018, we look at inclusion and accessibility through the creative lens.
Last modified on 26 Nov 2018 12:15 pm
Check out this story about Andrew Taylor who is living with DMD and has just celebrated his 50th birthday. Happy birthday from all of us Andrew!
Last modified on 8 Nov 2018 8:32 am
Our newly formed Peer Advisory Group (PAG) met for the first time last week and gave some excellent input into the MDNSW Online Communities project
Last modified on 5 Nov 2018 10:26 am
As part of our Peer Connect program we are hosting the SMArties Meet Up on Saturday 24 November at Hornsby RSL. The SMArties are a group of people living with Spinal Muscular Atrophy and their families, carers and friends
Last modified on 30 Oct 2018 10:22 am
Researchers at The Royal Children’s Hospital in Melbourne, Australia are looking for children aged 5-18 years who have been diagnosed with FSHD, to participate in one or both of these two studies.
Last modified on 30 Oct 2018 9:58 am
For years there has been a lack of a place to find quality, comprehensive and relevant online information about health, lifestyle, community and well-being for people with neuromuscular condition.
Last modified on 10 Oct 2018 7:44 am
Get down to the Fast Jets & Amazing Pilots event in support of NSW Kids in Need on Sunday 28th October, in North West Sydney! Meet amazing pilots who build and fly large scale jet aircraft models flying at 400 km/hour, coming into land at 90 km/hour with a perfectly sweet touch down! Checkout
Last modified on 30 Oct 2018 10:36 am
MDNSW offers a full-time postgraduate scholarship to a suitably qualified candidate in a relevant discipline to undertake research studies leading to a PhD.
Last modified on 25 Sep 2018 2:07 pm
The Australian Sliders Powerchair Hockey team has arrived in Italy for the IPCH World Championship 2018 which will take place in from 24 Sept – 1 Oct. The Sliders team includes our NSW player Kieran Watts as Vice Captain! Competition starts off today and we wish Kieran and his teamates all the very best as they take on the world for Powerchair Hockey glory!
Last modified on 19 Sep 2018 8:18 am
The Navy tour of Choules is part of NSW Kids in Need Open Day and will raise funds to support Muscular Dystrophy NSW’s programs and services along with 5 other important children’s charities. Unfortunately, the ship does not offer access for wheelchairs or prams. Children must be able to walk to access the ship and for safety reasons babies in arms are not permitted.
Last modified on 14 Aug 2018 9:23 am
The recent client survey highlighted the need for us to update our website.
Last modified on 3 Aug 2018 8:49 am
Transport is about to get more affordable for people on the National Disability Insurance Scheme, thanks to a new fare subsidy of average $10 per trip. Transport for NSW has also announced a $3-million boost to community-transport providers during the transition to the NDIS
Last modified on 17 Jul 2018 8:25 am
My Health Record gives you access to your key health information such as allergies, medical conditions and treatments, medicine details, and test or scan results in one place. In 2018, every Australian will get a My Health Record. However, if you decide you don’t want a record, you can tell them during a three-month period from 16 July to 15 October 2018. Visit the My Health Record website to learn more https://www.myhealthrecord.gov.au/for-you-your-family
Last modified on 6 Jul 2018 12:22 pm
The NDIS Quality and Safeguards Commission (NDIS Commission) has begun operation in NSW and SA as of the 1 July 2018. This means that if you are an NDIS participant in either NSW or South Australia and have a complaint or concern about a service provider supplying your NDIS funded supports, you will now need to contact the NDIS Commission rather than your local state Ombudsman.
Last modified on 9 Jul 2018 7:54 am
“Mind Over Muscle” is a biographical short film by the late Peter Dalrymple, chronicling his life with Duchenne Muscular Dystrophy. Please watch Peter’s short film and cast your vote via www.focusonability.com.au website before 3 July 2018.
Last modified on 9 May 2018 7:33 am
NEWS FLASH!! A grant has been awarded to Muscular Dystrophy Foundation Australia to develop an online, integrated technology system to build the capacity and skills of all people living with a neuromuscular condition, along with families and carers, thanks to a commitment of funding through the ILC Readiness Grants via the National Disability Insurance Agency (NDIA). Announced on Monday 1 May 2018, this ground-breaking project will see your community more connected & informed to make decisions about personal needs, along with more integration with specialist & mainstream service provision & support networks in your local area
Last modified on 10 May 2018 1:28 pm
On Sunday, Treasurer Scott Morrison announced that in Tuesday’s federal budget, Spinraza, the drug that Mrs McElwee credits with saving her daughter’s life, will now be put on the Pharmaceutical Benefits Scheme (PBS) for just $39.50 per script ($6.40 for concessional patients) for all children with SMA type 1, type 2 and type 3a under the age of 18.
Last modified on 6 Jun 2018 8:18 am
Do you have questions about the NDIS and how it can support you or your child?
Last modified on 13 Apr 2018 1:32 pm
The wheelchair soccer season is here! If you’ve always wanted to give soccer a go, come along and have a blast!
Last modified on 1 May 2018 1:20 pm
Google is adding information on its Maps platform to point people to accessible public transit stops in London, New York, Tokyo, Mexico City, Boston and Sydney. To find the wheelchair accessible routes, type your destination into Google Maps, tap “Directions,” and then choose the public transportation icon. Once you tap on “Options,” you’ll find wheelchair accessible under the Routes section. It will show you a list of all that possible routes that accommodate wheelchairs.
Last modified on 12 Feb 2018 2:32 pm
Recharge your knowledge, plug into new ideas, energise your skills and get into the network!” is a 2-day peer networking conference at the Figtree Conference Centre in Sydney Olympic Park for people with physical disability interested in peer support that will showcase a combination of formal peer support training, guest speakers and peer chat groups.
Last modified on 29 Jan 2018 8:19 am
Read about how the Canowindra community worked together to build a fully accessible home for the Read Triplets.
Last modified on 25 Jan 2018 2:53 pm
A while back we updated you on Philip’s epic 90km hike in Denmark. Now, we’d like to share his documentary with you.
Last modified on 22 Jan 2018 12:44 pm
A second round of the LEEP commencing on Monday, 5 February 2018 and running for six weeks.
Last modified on 17 Nov 2017 1:41 pm
Come and give Powerchair Hockey a go!
Last modified on 13 Oct 2017 10:41 am
Check out Philip’s latest journal post on his epic 90km hike via Denmark’s longest road!
Last modified on 11 Oct 2017 8:53 pm
Once a NDIS plan is approved, this is generally in place for 12 months. Before the plan ends, the plan will be reviewed.
Last modified on 3 Oct 2017 2:13 pm
Rio 2016 Paralympian Daniel Michel has continued carving out a name for himself on the world stage, adding a second gold medal to his Kansas City haul to become the first Aussie EVER to win individual GOLD at a BISFed World Open!
Last modified on 13 Oct 2017 10:26 am
Congratulations to the Wests Tigers in winning the closely fought Grand Final battle in the Push and Power Rugby League competition on Saturday!!
Last modified on 26 Sep 2017 9:08 am
A collaboration between the University of Canberra and Capital Region Muscular Dystrophy is offering the opportunity to become part of a program aimed at highlighting the benefits of exercise and healthy living to people with FSHD. See how you can get involved!
Last modified on 26 Sep 2017 9:15 am
Check out some of this information the NDIS has published about what is required for equipment to be approved / funded.
Last modified on 1 May 2018 12:30 pm
The Plan Implementation Workshops are practical workshops to support participants, carers and their families to prepare for implementing their approved NDIS plan.
Last modified on 10 Aug 2017 8:28 am
We love this speech by Michigan public official Commissioner Jason Morgan, who talks openly for the first time about living with Becker Muscular Dystrophy.
Last modified on 3 Jan 2018 12:47 pm
The NDIS Community Connection Desk provides the opportunity to come and meet a Local Area Coordinator (LAC) in your area. The 20 minutes, one to one consultation, is an opportunity to bring your questions to an LAC.
Last modified on 8 Aug 2017 10:57 am
August is Spinal Muscular Atrophy Awareness Month. At the MDNSW Medical Seminar on 11 November we will hear from Dr Michelle Farrar who is leading the SMA clinical trials at the Sydney Children’s Hospital.
Last modified on 3 Aug 2017 9:36 am
MDNSW extends sincere congratulations to past President of MDNSW Professor Graeme Morgan who was recently appointed Member of the Order of Australia (AM) for significant service to medicine as a clinical geneticist and paediatrician to medical education and professional organisations.
Last modified on 27 Jul 2017 2:09 pm
Wheelchair Grand Prix is the latest highly competitive sport for people who use powerchairs! Read about how it’s founder Chris Quinlan has created a legacy in honour of his mate, and late friend of MDNSW, Dean Crane
Last modified on 26 Jul 2017 8:04 am
The history of the disability rights movement is less well documented than other civil rights movements but equally as important. Defiant Lives is a powerful new film collating many of the stories and battles for access and inclusion we can tend to take for granted, or simply not realise actually happened.
Last modified on 14 Jul 2017 3:08 pm
Peer Support is a great way to share experiences, get useful information, get tips on the NDIS and build your network and confidence. The Physical Disability Council of NSW runs groups in different areas and the meetings are free to attend.
Last modified on 13 Jul 2017 8:44 am
Insight on SBS looks interesting, where complex, but seldom heard stories are told about people who grew up with a sibling who has a disability.
Last modified on 10 Aug 2017 2:48 pm
Do you have a meeting with a Local Area Coordinator about your plan? Are you thinking about how you can use your NDIS funding?
Last modified on 6 Jun 2017 2:29 pm
We are aware of a potential scam involving people claiming to be from NDIA attempting to collect personal details via telephone.
Last modified on 6 Jun 2017 2:45 pm
Our first Young Adults retreat was held on the last weekend in May at the newly refurbished and accessible Parkroyal Parramatta.
Last modified on 17 May 2017 7:59 am
Check out some useful information from NDIS
Last modified on 16 May 2017 8:13 am
Great news for all people with disabilities, their families and carers!
Last modified on 16 May 2017 8:31 am
Check out the details of the May Meet Up of SMArties!
You can meet others and share your stories, and hear the latest on research for children and adults with Spinal Muscular Atrophy.
Last modified on 3 May 2017 11:58 am
Here is a chance to contribute to a focus group for women with disabilities who have experienced domestic violence.
The aim of the group will be to develop content for DV awareness training on violence against women with disabilities. Check out further details below.
Check out this story about an exciting new development in drug treatment for Duchenne Muscular Dystrophy
Last modified on 2 May 2017 11:07 am
A three-year-old Perth boy suffering a rare genetic disorder will no longer have to fly overseas for special treatment thanks to a new drug set to arrive in Australia.
Last modified on 2 May 2017 11:05 am
This NDIS video may help to answer some of your questions.
Last modified on 3 May 2017 12:02 pm
This year, the Expo is at Sydney Showground at Sydney Olympic Park.
Last modified on 2 May 2017 11:17 am
The Ryan family made the trip up from Sydney to check out Royal Australian Air Force Base Williamtown.
Last modified on 26 Apr 2017 11:48 am
40 year old Robert Bruce is just months away from embarking upon a 2000 kilometre journey, all of which, will be done solo in a kayak.
Last modified on 26 Apr 2017 10:21 am
Liverpool’s El Saddik family is just one of many families to benefit from a super charity event this weekend.
Last modified on 19 Apr 2017 7:43 am
Get your tickets now to one of these exciting venues as part of NSW Kids in Need World’s Largest Open House on Sunday 30 April 2017.
Last modified on 19 Apr 2017 7:47 am
What a great day! Today was the opening day of the 2017 National Electric Wheelchair Sports competition at the Academy of Sport Narrabeen.
Last modified on 7 Apr 2017 2:04 pm
It’s grand finals time!
Head to Kevin Betts Stadium Mt Druitt this Saturday to watch the clash between this seasons top teams in the Powerchair Hockey competition.
Last modified on 4 Apr 2017 9:02 am
The NSW government has announced plans to develop a Big Bear Cottage-a hospice for young adults aged 18-30 years.
Have a look at the story. Scott had a few words to say!
Last modified on 3 Apr 2017 3:15 pm
FSHD Global is holding their first Community Evening on Tuesday, 11 April at Paramatta from 7-8.30pm.
Last modified on 3 Apr 2017 3:13 pm
If you have always wanted to have a go, there is a junior development program where you can learn soccer skills and meet others keen on playing sport.
Come along to Kevin Betts Stadium at Mt Druitt. All equipment is available to start you playing!
Last modified on 3 Apr 2017 3:32 pm
Check out these courses that are offered by Leep at Penrith.
Last modified on 3 Apr 2017 3:37 pm
The NDIS has recently released its strategies for Aboriginal and Torres Strait Islander carers and carers living in rural and remote NSW.
Visit the NDIS website to find out more.
Last modified on 5 Apr 2017 3:12 pm
Check out this interesting new study into Bone Health in FSHD!
Last modified on 24 Mar 2017 1:03 pm
The NDIS rolls out in a number of new locations this July.
Paul from Tweed Heads talks here about setting his goals and thinking about the individualised supports he’ll be able to choose and control when the NDIS rolls out in his area.
Last modified on 22 Mar 2017 11:20 am
NDIS Information sessions are available in the next few weeks in many areas of NSW including Sydney, the NSW North Coast and Western and Southern NSW.
Last modified on 20 Mar 2017 12:38 pm
Best of luck to all competing in the Boccia State Titles this weekend!
Last modified on 6 Jan 2017 12:06 pm
The competition is fierce!
Check out the Powerchair Football national club championships underway this week at Netball Central at Homebush.
Last modified on 12 Dec 2016 8:39 am
Listen to Mel and Jordan from Hireup talking with ABC News 24 on International Day of People with a Disability about technology driving innovation in the disability sector.
Last modified on 12 Dec 2016 7:53 am
Are you planning to go to uni next year? Or are you part way through your uni studies?
Then have a look at this scholarship opportunity. Applications are open now and will close on 3 February 2017.
Last modified on 29 Nov 2016 2:08 pm
Registrations are now open for the 2017 Wheelchair Rugby League season.
Get your name down and join the action!
Last modified on 22 Nov 2016 8:52 am
Researchers at The Sydney Children’s Hospital and The University of New South Wales are seeking volunteer research participants to learn about the costs of caring for young people with Spinal Muscular Atrophy (SMA).
Last modified on 22 Nov 2016 8:47 am
There has been a lot of activity in the clinical trial space for spinal muscular atrophy in the last 2 years.
Last modified on 18 Nov 2016 8:07 am
Congratulations on your selection in the Australian Powerchair Football squad. Check out his interview for Sydney FC.
Last modified on 2 Nov 2016 9:27 am
Check out the latest blog from FSHD – Global Research on fatigue and FSHD.
Last modified on 1 Nov 2016 10:38 am
Only 7 weeks to go until the annual Muscular Dystrophy NSW Kula N Gadu camp at Narrabeen.
Last modified on 28 Oct 2016 8:35 am
Check out the first Save Our Sons Duchenne Community Forum
Last modified on 27 Oct 2016 7:57 am
Lead UX Designer Melanie Tran will share her experience on design thinking, human centred designs, 3D printing and assistive technology!
Last modified on 27 Oct 2016 7:50 am
Come along to the NSW National Electric Wheelchair Sports Open Day!
Last modified on 21 Oct 2016 8:25 am
The countdown is on to the start of the Powerchair Hockey season!
Get over to Kevin Betts Stadium on Saturday to register and for grading.
Equipment needed for players will be available at the stadium.
Last modified on 19 Oct 2016 8:39 am
“The best Powerchair Football game I’ve ever seen!” – NSW Strikers fan.
In case you missed it, here is the FULL replay of the 2016 National Championship game! Congratulations to Queensland on their 3-2 win over the NSW Strikers.
Last modified on 6 Oct 2016 12:47 pm
You are invited to attend the 56th Annual General Meeting of the Muscular Dystrophy Association of NSW.
Last modified on 5 Oct 2016 10:50 am
Welcome home Daniel Michel! So proud of your Paralympic achievement!
Last modified on 15 Feb 2018 9:58 am
Interested in power wheelchair sports? ⚽️ ?
Last modified on 26 Sep 2016 11:47 am
Eteplirsin, a drug developed by Perth researchers, has been approved by the US Food and Drug Administration.
Last modified on 26 Sep 2016 11:44 am
Check out his story. What an impressive young man!!
Last modified on 27 Sep 2016 9:59 am
Story of life with FSHD
Last modified on 20 Sep 2016 4:02 pm
Hear Daniel Michel’s story…His discovery of the sport of boccia, his journey to Rio and his Paralympic experience.
Fantastic achievement, Dan!
Last modified on 22 Sep 2016 9:30 am
We’re all proud of your achievement.
Last modified on 15 Sep 2016 9:27 am
What a way to start your Paralympic competition!
Last modified on 15 Sep 2016 9:52 am
Spread Awareness of Early Signs!
Last modified on 15 Sep 2016 9:57 am
Daniel Michel is making history as the first Australian Boccia player to be selected for the Paralympic Games – since the year 2000.
Last modified on 15 Sep 2016 11:05 am
7th September is the 3rd annual World Duchenne Awareness Day#WDAD16. The date was chosen because there are 79 exons in the dystrophin gene responsible.
Last modified on 2 Sep 2016 12:02 pm
The 2017 NSW Youth Advisory Council applications are open now. Apply online
Last modified on 18 Aug 2016 3:19 pm
Have a look at the recent research by Choice on this issue. Don’t miss the interview comments in the article from Carolyn Campbell-McLean!
Last modified on 27 Jul 2016 10:50 am
Exciting news from the Garvan Institute in Sydney will offer hope to families faced with undiagnosed rare genetic conditions.
Last modified on 14 Jul 2016 10:11 am
Check out our young Powerchair Football players showing off their skills at the recent Football4All Gala Day at Valentine Park
Last modified on 13 Jul 2016 2:31 pm
What a fantastic achievement, Daniel Michel off to Rio with the Australian Paralympic Team!
Last modified on 28 Sep 2015 9:43 am
Researchers have successfully isolated human muscle stem cells and shown that the cells could robustly replicate and repair damaged muscles when grafted onto an injured site.
Last modified on 15 Sep 2015 11:12 am
Click here to read about prevalence and impact of Genetic Muscle Disorders in New Zealand and other upcoming events in this Australasian Neuromuscular Network (ANN) newsletter.
Last modified on 27 Aug 2015 12:57 pm
A Practice Brief focusing on foot care for people with Charcot-Marie-Tooth disease (CMT) is now available.
Last modified on 18 Aug 2015 8:44 am
Australian boys with Duchenne muscular dystrophy (DMD) stand to improve their quality of life if a breakthrough drug gets approved.
Last modified on 25 Jun 2015 6:07 am
ResMed has issued a Recall for Product Correction Notice. The use of ASV in patients with symptomatic chronic heart failure(NYHA 2-4) and reduced LVEF≥45%, and moderate to severe predominant central sleep apnoea could potentially represent a safety risk. If you have questions, or need more information, please contact your respiratory specialist.
Last modified on 28 Apr 2015 11:53 am
A reminder to all our members who are dependent on ventilator support to do a safety check on their breathing equipment.
Last modified on 3 Dec 2014 1:59 am
Researchers have found that injections of cardiac stem cells might help reverse heart damage caused by DMD,
Last modified on 30 Nov 2014 11:46 pm
Scientists are getting closer to introducing a new treatment which they believe will improve the quality of life for people with DMD.
Last modified on 11 Feb 2016 11:40 am
Read Melanie Tran’s Duke of Ed story on CommBank’s blog!
Last modified on 11 Feb 2016 12:11 pm
MDNSW is now a National Licensed Operator for the Duke of Ed!!!
Last modified on 11 Feb 2016 12:10 pm
Latest research technique results in the production of human skeletal muscle from stem cells.
Last modified on 12 Jul 2013 2:35 pm
This website has been designed to inform you about the rights and entitlements of people with disabilities under the NDIS and about how to engage with DisabilityCare Australia to achieve the support that suit the wishes and circumstances of people with disability. Click here to see the website.
Last modified on 11 Feb 2013 7:46 pm
The Australian Paralympic Committee has welcomed the announcement that Sydney will host the 2013 Asia Oceania Boccia Championships!! Click here for more information.