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Article: MDA ED nominated for Australian of the Year

FOR more than three decades Boris Struk has pooled all his resources into finding a cure for muscular ­dystrophy.

His son Ryan, 34, was diagnosed with the condition at age three, with doctors telling the family he wouldn’t live past 14.

Determined to find answers, the Greenvale man founded Muscular Dystrophy Australia (MDA), an organisation that has since raised about $43 million for research and support services.

“At first it was to try and change the course of the diagnosis and that was to find a treatment or cure for MD that we might benefit from,” Mr Struk said... [CONTINUES]

To read the full article click on the 'Read more' link...

(11 August 2014)Read more...

Media Release

Local charity hero nominated for Australian of the Year Award

Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk, has been nominated for both the 2015 Australian of the Year Award and the 2015 Australia’s Local Hero Award.

“It is a true honour to be nominated for both of these awards and I would like to thank the local community for supporting me in this acknowledgement of my work in founding MDA,” said Mr Struk.

In an early show of recognition for Boris, the Australian of the Year Awards profiled his nomination on their social media page which led the way for an outpouring of support from hundreds of people across the country.

Boris has been nominated for the two aforementioned awards out of the total four awards, with the other two remaining categories being the 2015 Young Australian of the Year and 2015 Senior Australian of the Year... [CONTINUES]

To download the full Media Release click on the 'Read more' link...

(05 August 2014)Read more...

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MDA Executive Director nominated for Australian of the Year Award

MDA Executive Director Boris M Struk has been nominated for two awards: Australia's Local Hero and Australian of the Year for 2015.

The Awards have chosen to feature Boris' nominations on their Facebook page (click here to view) and in their national e-newsletter which you can view by clicking on the ‘Read more’ link.

The team at Muscular Dystrophy Australia would like to congratulate MDA Executive Director Boris M Struk on his nominations.

Well done Boris and good luck with the awards!

(23 July 2014)Read more...

Research News

Clinical trial for congenital muscular dystrophy to start


Swiss pharmaceutical company Santhera has announced that it will soon start a clinical trial of a drug called omigapil in children with congenital muscular dystrophy (CMD).

The study (called CALLISTO) will take place in the USA and will assess the safety, tolerability and pharmacokinetics of omigapil. Pharmacokinetics involves measuring how much of the drug reaches the blood stream, which will help to determine the optimal dose for a subsequent clinical trial.

(22 July 2014)Read more...

Media Release

Muscular Dystrophy Australia boss shocked & saddened by deaths

“It is a sad day for the Muscular Dystrophy (MD) community with the loss of these two young men in Perth and we at Muscular Dystrophy Australia offer our deepest condolences to the families at this heartbreaking time,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

It has been reported that two men with Muscular Dystrophy, both aged 25, living in the southern Perth suburb of Beaconsfield have died at their home during yesterday’s major storms in which their residence lost power.

“As the coroner is still yet to make a final report I do not want to speculate on the details of the incident but one very real issue that people with Muscular Dystrophy face daily is ensuring they have access to power at all times to run their ventilators,” said Mr Struk.

“Many of us worry about the materialistic things in life, about having a nice enough home, the newest car or even enough cash to go out on the weekend. But for a person with severe MD they face the fear of not being able to breathe without the assistance of the mechanical intervention of their ventilators,” said Mr Struk... [CONTINUES]

To download the full Media Release click on the 'Read more' link...

 

(15 July 2014)Read more...

2014 SUPERHERO CAPES ARE NOW FOR SALE

In preparation for this year’s 2014 National Superhero Week (1 - 5 September), you can now purchase the iconic red MDA Superhero Capes! Each cape is $10 (+P&H).

Anyone can wear these capes during National Superhero Week regardless of whether you’re hosting the event or not, so it is a way for every single person to get involved and help support research for MD. Please call MDA on (03) 9320 9555 prior to placing your order to ensure there is enough stock available for your request and to attain the price for postage and handling (P&H). All P&H rates are calculated by Australia Post guidelines. It is advisable to place one bulk order to minimise these costs.

As with all funds raised for Superhero Day, proceeds from the sale of these capes will be going towards supporting research at the National Muscular Dystrophy Research Centre (NMDRC). Deadline for all cape orders is: Monday 18 August 2014.

To download the Order Form click on 'Read more' link...

(09 July 2014)Read more...

ChallengeMD! Great Ocean Walk 2014 - Experience what is destined to become one of the world's greatest hikes while supporting MDA through this local challenge!

Opened in 2006, the Great Ocean Walk spans 91km of spectacular coastal scenery, deserted wild beaches, sheer cliffs, historical lighthouses and shipwrecks, giant mountain ash forests and abundant native wildlife.  It is destined to become one of the great walks of the world and it’s here right on our doorstep.

Registrations are now open for the 2014 event scheduled from 7th to 10th November 2014.

 

(04 July 2014)Read more...

Thank you to our valued volunteer Rhiannon Robinson

On behalf of myself and Muscular Dystrophy Australia I would like to extend a huge thank you to Rhiannon Robinson for so generously volunteering her time and graphic design skills to designing the new 2014 Superhero Day for MD ‘Event Info Booklet’.

We are so grateful to you for doing such a wonderful job on the booklet and choosing to help the MD community. MDA is largely self-funded and so we do rely on volunteers to help us out in order to continue to provide the best possible care and support for our members.

If you would like to know more about Rhiannon you can visit her Linkedin profile by clicking on the 'Read more' link... 

Well done Rhiannon, we thank you.

Kind regards,

Boris M Struk

MDA Executive Director

(03 July 2014)Read more...

Register now for 2014 Superhero Day and help Make a Difference

Registrations open now!

This is a national event that anyone can host, from schools, workplaces, community groups and more!

All proceeds from the event go to MD research at the National Muscular Dystrophy Research Centre.

Call MDA for more information on (03) 9320 9555.

Click on the 'Read more' link to download the Registration Form...

(02 July 2014)Read more...

MDA Harley Raffle No. 56 Winner

MDA Harley Raffle No. 56 Winner

Dennis C.

Chadstone VIC Australia

Ticket No. 1571

Media Release

Disability organisation takes a stand against axing of ‘Ramp Up’

“The Abbott Government’s lack of support for the disability community is echoing loudly today with the axing of funding for the advocate website ‘ABC Ramp Up’ and we at Muscular Dystrophy Australia want to ensure that voice is not lost by initiating a similar platform which is not at the mercy of the government,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

“Scrapping a website which provides an avenue for social and political commentary from the perspective of those living with a disability is an abhorrent decision which only highlights the government’s complete disregard for this sector of the population,” said Mr Struk.

“MDA is working towards ensuring that the voice of this community is not muzzled for too long and we are currently in the process of creating a new universal platform for any person in the disability community to have access to, regardless of condition, and have the ability to provide content for the site,” said Mr Struk...[CONTINUES]

To download the full media release click on the 'Read more' link...

 

(30 June 2014)Read more...

Media Release

MDA to initiate ‘Ramp Up’ style page for disability community voice

Next Monday 30 June 2014 will be a grim day for the disability community of Australia when the advocate group website ‘ABC Ramp Up’ is scrapped due to the government’s decision to cease funding for the page.

“The government’s choice to axe funding for a website dedicated to providing a voice for those in the disability community is a detrimental loss to the public discourse as it removes a vital source of valid opinion and comment. It also highlights the government’s lack of support or care about this sector of the population,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

“As the head of a disability organisation and the parent of a son with Muscular Dystrophy I am appalled that this website has been valued so poorly by the government and to take action we at Muscular Dystrophy Australia plan to initiate a similar platform to Ramp Up which would provide a voice for all people in the disability community and would not be at the mercy of the government,” said Mr Struk... [CONTINUES]

To download the full media release click on the 'Read more' link...

(27 June 2014)Read more...

Article: Removing Ramps And Silencing Disability Issues

By Ryan Struk

It was announced recently that the ABC's disability website, Ramp Up, launched in 2010, will be scrapped by the end of the month.

Seed funding for the website — provided by the Department of Social Services — was scheduled to cease at the end of June this year. The previous government had expected that the ABC, by this time, would have incorporated Ramp Up into their core operations.

Sadly the ABC board and management chose not to. It is the only dedicated online outlet for news, opinion and discussion by writers with disabilities in the mainstream media.

The outrage expressed by members of the disabled community has been significant and understandable. The Facebook group Save ABC Ramp Up, has already attracted almost 1,000 members since the announcement. A petition on change.org addressed to ABC Managing Director Mark Scott and Assistant Minister for Social Services Mitch Fifield, has been signed by about 17,000 supporters... [CONTINUES]

To read the full article click on the 'Read more' link...

(26 June 2014)Read more...

Research News

First clinical trial tackling the cause of myotonic dystrophy started

Isis Pharmaceuticals has announced that it has started a phase 1 clinical trial of ISIS-DMPKRx — a drug designed to reduce the production of toxic molecules in the cells of people with myotonic dystrophy type 1. Previous clinical trials for myotonic dystrophy have only tested drugs aimed at relieving particular symptoms of the condition such as muscle stiffness or heart problems.

(12 June 2014)Read more...

Host a Superhero Day for MD at your workplace!

Superhero Day for Muscular Dystrophy is an exciting and fun event that can be hosted by corporate or retail workplaces, for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians.

Nominate your workplace now to host an event during 2014 National Superhero Week, in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept). You can be as creative as you like with the event. This is a fantastic opportunity for team building within your workplace while raising much needed funds for MD research.

To learn more about hosting a Superhero Day for MD at your workplace click on the 'Read more' link...

(10 June 2014)Read more...

Register now for 2014 Superhero Day for MD!

  • Child Care Centres,
  • Schools,
  • Community Groups,
  • Workplaces and more!

2014 National Superhero Week is a fun and imaginative event for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians. People of all ages are encouraged to host a Superhero Day, from kindergartens and schools, to workplaces and community groups. 

Anyone can nominate their school, workplace or community group to host a Superhero Day for MD event in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept). Call MDA for more information on (03) 9320 9555 or visit the event website at: www.superherodaymd.com or Facebook page: https://www.facebook.com/SuperheroDayMD

Click on the 'Read more' link to download the Registration Form...

(03 June 2014)Read more...

Moyne Gazette newspaper: Dinner helps muscular dystrophy

FINE dining has been used to raise some money for a good cause. Members of the Port Fairy Rotary Club recently came together for a progressive dinner.

This event was held to raise money for Muscular Dystrophy Australia. The progressive dinner included nibbles, mains and sweets served at three different locations around the town. John and Heather Clue served up the nibbles, Margaret Broers the main course and John and Marea Ellard hosted sweets.

The night raised $1000 which was presented to the executive director of Muscular Dystrophy Australia, Boris Struk, on May 19. Port Fairy Rotary Club president Hester Woodrup said the decision to hold the dinner for Muscular Dystrophy Australia was made thanks to a local connection... [CONTINUES]

To download the full article click on the 'Read more' link...

 

(29 May 2014)Read more...

Research News

Conditional approval of ataluren for Duchenne MD recommended in Europe

Ataluren is set to be the first ever drug licenced to treat the underlying genetic cause of Duchenne muscular dystrophy (MD). The European Medicines Agency (EMA) has received a recommendation from its advisory committee that ataluren should be given conditional approval.

Ataluren, which will now be known by the name “Translarna”, has been developed by PTC Therapeutics to overcome a specific change in the DNA called a “nonsense mutation” which causes 10 to 15 percent of cases of Duchenne MD. Clinical trials have indicated that the drug may be able to slow down the progression of muscle weakness.

(27 May 2014)Read more...

HELP MDA WIN A SHARE IN $1 MILLION - We need your help!

The Dick Smith Foods Foundation have a competition going which will see over 70 charities win a share of $1 million, with prizes ranging from $10,000 to $50,000. To help MDA win a share in the prize money we need you to take a photograph of any Dick Smith Foods products in your pantry and email it to charity@dicksmithfoods.com.au together with the words:

“I vote for Muscular Dystrophy Australia, North Melbourne 3051".

You can also include your name and it will be added to the website so your vote will be publicly recorded.

For MDA to win, we must receive the most amounts of votes! Also, for every Dick Smith product shown in your photo, the votes add up. That means if you take a pic with yourself and 3 Dick Smith products, that will count as 3 votes for MDA!

Please help us win a share in this prize pool as it will go towards vital Muscular Dystrophy care and research, we want to win to help the MD community! Visit the completion website: http://www.dicksmithfoods.com.au/charity-breakthrough

(22 May 2014)Read more...

Clinical Trial

Study of early signs of breathing problems during sleep in DMD

Currently there are no accurate predictors of the need for a sleep study in children with DMD. Symptoms of breathing problems in DMD are slow to develop, and often are not noticed by the individual. Once symptoms of waking with a headache or being sleep during the day are reported, a sleep study often finds that sleep-disordered breathing is already present.

(21 May 2014)Read more...

Media Release

 

Boy with MD's plea to raise $5k to meet his hero in Sydney

A young boy living with the debilitating condition Muscular Dystrophy wants to fulfil his lifelong dream of meeting his hero Marvel icon Stan Lee when he makes an appearance the Supanova comic convention in Sydney next month and his family is appealing to the public to help him reach his goal of $5,000 to fund the trip.

“I think a lot of our son Jacob’s superhero worship stems from the progression of his disease, he looks at them and wishes that he had some of those abilities. It gives him a chance to escape from the reality of his wheelchair and being dependant on others,” said Jacob’s father, Gary Marsden.

“He is the biggest Marvel comics fan you will ever meet, meeting Stan Lee would be a dream come true, a memory he will have and be able to talk about forever. He realises it would be a once in a lifetime opportunity,” said Gary.

To download the full Media Release click on the 'Read more' link...

(20 May 2014)Read more...

Media Release

MDA boss wary of Budget’s $20b Medical Fund: hopes it's genuine

Muscular Dystrophy Australia encourages the Government to prioritise medical research but with a Budget filled with so many hits to the average Australian there are concerns that this item which Abbott has professed will be “the largest of its kind in the world” is more a distraction rather than genuine commitment to the health of Australians.

“We need to keep in mind that while there is absolutely a need for future medical research which this fund is said to focus on, we cannot forget about those who currently have these conditions, such as Muscular Dystrophy, who need our help now,” said Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk.

The announcement of the Budget’s $20 billion Medical Research Future Fund last night was well received by those in the disability sector, in particular the Muscular Dystrophy community, however it is hoped that Abbott will also honour the NDIS, without compromise, which is currently in a review until mid-year... [CONTINUES]

To download the full Media Release click on the 'Read more' link...

(14 May 2014)Read more...

Research News

Increasing blood flow may be of benefit in Duchenne MD

Results from a small clinical trial have shown that drugs that are usually prescribed for erectile dysfunction — sildenafil (Viagra) and tadalafil (Cialis) — might be able to reduce some of the symptoms of Duchenne MD.

In Duchenne MD, the essential muscle protein “dystrophin” is not produced. The main purpose of this protein is to protect muscles from damage during contraction. In addition, studies in mice have shown that without dystrophin, blood vessels supplying muscles do not adequately dilate during exercise, resulting in muscle fatigue and weakness. In mice this can be reversed with drugs such as sildenafil and tadalafil.

(13 May 2014)Read more...

Add Muscular Dystrophy Australia as a Facebook friend today!

We need your help...

Help spread the word about Muscular Dystrophy and the work that MDA is doing by adding MDA as a friend on Facebook.

Please visit the MDA Facebook page and add us as a friend today. Also tell your friends about our page so they can add us as well. 

The more people we can reach, the more people we can educate about this condition and hopefully Make a Difference in the lives of those affected and their families.

Muscular Dystrophy… Something worth fighting for!

Click on the 'Read more' link to visit the MDA Facebook page...

(06 May 2014)Read more...

Herald Sun newspaper: Kids lose their king

The victim of a microlight plane crash Peter Doutch was a generous man who spent his spare time helping children with disabilities.

The father of two, who died after a microlight aircraft crashed into a Tyabb home on Sunday night, spent 15 years donating his time and karaoke equipment to entertain children with muscular dystrophy.

Mr Doutch was dubbed Mr Karaoke by the MD community for his role as a host. Muscular Dystrophy Australia’s executive director, Boris M Struk, said Mr Doutch was inspired to help after he was involved with printing the newsletter for the support group.

“He was always the first to lend a hand or crack a joke to make you smile,” Mr Struk said... [CONTINUES]

Click on the 'Read more' link to download the full article...

(30 April 2014)Read more...

MD community mourns the loss of valued volunteer Peter Doutch

“It is with great sadness that we mourn the passing of Mr Peter Doutch in the tragic ultralight plane accident, he will be truly missed within the Muscular Dystrophy community as he was a fantastic volunteer for over 15 years,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

“Peter, or as we affectionately dubbed him ‘Mr Karaoke’, was a fantastic soul who volunteered at more than 25 respite camps for children with MD, CampMDA, as the host of a wonderful karaoke night.”

Mr Doutch was flying the ultralight plane over Tyabb on the Mornington Peninsula on Sunday 27 April around 5.20pm when crisis ensued and the plane crashed, leaving the only other passenger his 5-year-old daughter, Emily, in a critical condition. Mr Doutch was pronounced dead at the scene... [CONTINUES]

Click on the 'Read more' link to view the full article...

(29 April 2014)Read more...

Castlemaine Mail newspaper: A train ride worth more than gold

A group of children and adults living with Muscular Dystrophy has enjoyed a a very special ride aboard the Victorian Goldfields Railway as part of the 93rd CampMDA at Maldon’s Derby Hill Blue-Light Camp.

More than 25 people participated in CampMDA last Wednesday with the age group of people affected by MD ranging from six to 30. Muscular Dystrophy Australia’s executive director Boris M Struk said the camp was a fantastic opportunity for those in the MD community to get together and socialise without the stress of having to arrange activities themselves.

“We commend the railway for having such wheelchair-friendly facilities, as it is not always easy to find activities that are suitable for a sizeable group with multiple wheelchairs."

Click on the 'Read more' link to download the article...

(24 April 2014)Read more...

Research News

Sarepta to apply for accelerated approval of Duchenne MD drug

Sarepta Therapeutics has issued a press release which gives an update on their plans for the development of exon skipping drug “eteplirsen”. Eteplirsen is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 51’. It has the potential to treat around 13 percent of boys with Duchenne muscular dystrophy – those with a mutation in the vicinity of exon 51.

(23 April 2014)Read more...

2014 Superhero Day for MD - REGISTRATIONS OPEN NOW!

Superhero Day for Muscular Dystrophy is a fun and imaginative event for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians. People of all ages are encouraged to host an event during 2014 National Superhero Week, from kindergartens and schools, to workplaces and community groups. Muscular Dystrophy is a muscle-wasting disorder that has 60 different variations and the focus of this event is on the paediatric form of MD - Duchenne Muscular Dystrophy – which mainly affects young children.

The event aims to promote a positive message for children living with Muscular Dystrophy, that just like a superhero that walks amongst everyone by day but hides a super strength; a child with MD is just like other children but has developed super powers of resilience, creativity and wisdom. Funds raised from the National Superhero Week will be going to support research at the National Muscular Dystrophy Research Centre (NMDRC) which is the leading MD research centre in Australia. Anyone can nominate their school, workplace or community group to host a Superhero Day for MD event in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept).

Call MDA for more information on (03) 9320 9555 or visit the event website at: www.superherodaymd.com or Facebook page: www.facebook.com/SuperheroDayMD.

Click on the 'Read more' link to download the Registration Form.

 

(14 April 2014)Read more...


Bendigo Advertiser newspaper: A Beautiful Ride

TWENTY-SIX people with muscular dystrophy took in the beautiful sights of Victoria's countryside yesterday as they chugged along the Victorian Goldfields Railway.

"It's wonderful, it's not something they could ordinarily do." - Boris M Struk

The excursion was part of a five-day camp run by not-for-profit organisation Muscular Dystrophy Australia; providing sufferers with a change of scenery and carers with a well deserved break. Muscular Dystrophy Australia executive director Boris M Struk commended the railway for having wheelchair-friendly facilities and said all participants loved the chance to ride an old steam train.

"It's wonderful, it's not something they could ordinarily do," he said. He said the organisation ran four camps throughout the year at a facility based in Maldon, which allowed participants a rare chance to socialise with other people suffering from the disease... [continues]

To view the full article click on the 'Read more' link...

(10 April 2014)Read more...

MDA Singapore

MDA Singapore Visit to MDA HQ

What was quite amazing were not the differences, but the similarities, between our organisations’ direction through the range of programs and services delivered to our respective MD communities.

 

(10 April 2014)Read more...

Media Release

Train ride worth more than gold for a group of people living with MD


Tomorrow will be a wonderful day in the lives of a group of children and adults living with Muscular Dystrophy as they board the Victorian Goldfields Railway for a memorable steam train ride as part of the 93rd CampMDA.

“We commend the railway for having such wheelchair-friendly facilities, as it is not always easy to find activities that are suitable for a sizeable group with multiple wheelchairs,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

The Victorian Goldfields Railway runs through the Goldfields of Central Victoria linking the historic towns of Castlemaine to Maldon, showcasing some of the richest gold mining areas in Australia. Over 25 people are participating in CampMDA with the age group of people affected by MD ranging from six to 30-years-old.

“Camp is a fantastic opportunity for those in the MD community to get together and socialise without the stress of having to arrange activities themselves. It also provides a chance for the families of the participants to have a break and know their loved one is being taken care of,” said Mr Struk... [Continues]

To download the full Media Release click on the 'Read more' link...

(08 April 2014)Read more...

Golf Day

More than $3,000 raised in Golf Day fundraiser

The successful event was held at the Eynesbury Golf Club, Victoria, on 2 March raising $3,120 for Muscular Dystrophy Australia and no doubt a few glasses of celebratory beer were also raised at the end of the day.

 

(07 April 2014)Read more...

Big Boys Toys - Car Show & Family Fun Day

Essendon Fields (Essendon Airport) will come alive on Sunday 7th December 2014, with the roar of horsepower, muscle and exotic cars in the inaugural Big Boys Toys Car Show.

(05 April 2014)Read more...

2014 Education Seminar

Teachers, teacher aids and carers invited to MD Education Seminar

Teachers, teacher aids and carers are invited to attend an upcoming Muscular Dystrophy Education Seminar being hosted by Muscular Dystrophy Australia on the 9th of May 2014 at the MDA Head Office in North Melbourne. This is a free Professional Development event targeted at those working at schools who have students with Muscular Dystrophy, as well as teachers who may like to further their knowledge about MD or can foresee the potential of a student with the condition entering their school.

There will be expert speakers presenting on the day, discussing topics such as classroom management; and methods to improve educational outcomes. Complimentary lunch will be provided to all in attendance on the day.

Date: Friday 9 May 2014

Time: 9am – 4pm

Location: MDA Head Office, 111 Boundary Road, North Melbourne VIC 3051

Cost: Free

RSVP: To Lauren Oakley by Friday 2 May 2014 via phone: (03) 9320 9555 or email: Lauren.Oakley@mda.org.au

Click on the 'Read more' link to download the event flyer...

(02 April 2014)Read more...

WANT TO WIN A HARLEY-DAVIDSON FATBOY?

Purchase a ticket for $10 in the MDA Harley-Davidson Raffle #56 for your chance to win this amazing prize worth over $30,000! Money raised from the raffle goes toward Muscular Dystrophy care, research, respite and information services. So help Make a Difference today by buying a ticket and encouraging others to do so. Winner will be drawn at 12pm on 30 June 2014 and will be notified directly by phone from MDA's Executive Director.

For more information or to purchase tickets over the phone, please call the Harley Raffle Hotline on (03) 9320 9565.

Otherwise you can download the Entry Form by clicking on the 'Read more' link and send it in via:

FAX: (03) 9320 9595 | EMAIL: harley@mda.org.au | POST: MDA, 111 Boundary Road, North Melb VIC 3051.

GOOD LUCK!

(31 March 2014)Read more...

Research Update

DMD clinical trial news: drisapersen might work after all

At the end of 2013 devastating news was announced – the phase 3 clinical trial conducted by GlaxoSmithKline had failed to prove that the exon skipping drug ‘drisapersen’ improved muscle function in boys with Duchenne muscular dystrophy (MD). However, the drug’s original developer – Prosensa – has revealed that, based on more clinical trial results, it may work if boys are treated younger and for longer.

(25 March 2014)Read more...

Media Release

Australasian Neuromuscular Network meeting being hosted in Melb

World-class scientists and professors will be gathering in Melbourne to focus on best practice models to ensure Australia and New Zealand are providing exceptional care and service to patients living with neuromuscular disorders, as well as safeguarding equal access to clinical trials and new therapies.

“This meeting of the Australasian Neuromuscular Network (ANN) is a significant event in world of neuromuscular disorders, in particular Muscular Dystrophy, because it provides a forum for multiple prominent organisations to join together and focus on how to improve the lives of patients,” said Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk.

The meeting is being hosted by the ANN in conjunction with the National Health and Medical Research Council (NHMRC) and will be held at the Murdoch Childrens Research Institute located at The Royal Children’s Hospital (RCH), Melbourne, on 27-28 March 2014... [CONTINUES]

To view the full media release click on the 'Read more' link...

 

(24 March 2014)Read more...

Super Dads raise more than $23,000

It’s amazing what can be achieved when you want to Make a Difference.

From day one when Brett and Katrina Bugeja joined the ‘MD Family’ they immersed themselves and their family and friends in supporting MDA. In fact our first ChallengeMD Vietnam 2006 saw Brett, Katrina and an army of friends join the historic pedal through Vietnam.

(24 March 2014)Read more...

Research Update

Spinal muscular atrophy clinical trial update

Promising news has been released from clinical trials of two possible treatments for spinal muscular atrophy (SMA) in recent weeks. This is encouraging news for families affected by SMA and the pharmaceutical companies are now in a race to be the first to prove that their drug is safe and effective.

(17 March 2014)Read more...

Important Notice

Scientists, clinicians and MDA urge caution over stem cell “therapies”

Neuromuscular clinics and patient organisations including Muscular Dystrophy Australia have noticed a recent rise in interest in stem cell “therapies” being advertised by clinics in developing countries in Eastern Europe, Asia and South America. Numerous reports have surfaced of people traveling to these clinics and spending tens of thousands of dollars on these unproven procedures.

(05 March 2014)Read more...

Congratulations to our first Superhero Day for MD hosts for 2014

Kelly's Plains Public School in Armidale, NSW, hosted their Superhero Day event early this year, celebrating it last Friday 21 February 2014.

A huge thank you to all those who took part! If you would like more info on Superhero Day visit the website or the Facebook page.

Check out their feature article in the Armidale Express newspaper by clicking on the 'Read more' link below. .

 

(26 February 2014)Read more...

2014 MDA Run for Strength most successful event, 1,200+ people!

MDA would like to extend a huge congratulations and thank you to all those who participated in this year’s 2014 MDA Run for Strength fun run held at Albert Park Lake, on Sunday. The event was a fantastic opportunity for everyone to support the MD community and not even the rain damped spirits with race-goers completing either a 10km run, 5km run or 5km walk.

The park was abuzz with excitement and laughter as this year’s first superhero-themed fun run took place. Superman and Supergirl helped with the race warm up with many little heroes wearing the MDA red capes in the crowd. A significant amount of money was raised for care and research for MD and the total is yet to be finalised.

The fun run could not have been the success it was without the generous donation of time from many dedicated volunteers who were the backbone of this event. To everyone who kindly gave their time and to those organisations that sponsored the run, MDA thanks you with deep gratitude and appreciation.

We are looking forward to starting to plan the 2015 Run for Strength and hope we will see you all there next year!

To view photos of the event visit the MDA Facebook page by clicking on the 'Read more' link...

(18 February 2014)Read more...

Media Release

25 school mums running to support two students living with MD

25 mothers from the Strathmore North Primary School area are banding together to run in Muscular Dystrophy Australia’s ‘Run for Strength’ fun run to show their support of two young brothers, and students at the school, who have Muscular Dystrophy.

MDA’s fifth annual fun run is being held this Sunday, 16 February, at Albert Park Lake in Melbourne with proceeds from the event going to support both care for those in the MD community and research to help find a cure for the condition.

“It is an absolute privilege to have this group of mothers join together to run as a team in support of the two young brothers living with MD from their school community,” said MDA’s Executive Director, Boris M Struk... [continues]

To download the full media release click on the 'Read more' link.

(10 February 2014)Read more...

Research Update

Encouraging clinical trial results for oculopharyngeal MD

The results of a clinical trial have shown that transplanting cells from unaffected muscles into the throat may help with the swallowing difficulties that affect people with oculopharyngeal muscular dystrophy (OPMD).

(03 February 2014)Read more...

Research Update

Duchenne MD clinical trial update

Sarepta Therapeutics and Prosensa have both announced news from the clinical trials of exon skipping for Duchenne muscular dystrophy. The trials tested eteplirsen and drisapersen - drugs with the potential to treat around 13 percent of boys with Duchenne muscular dystrophy.

(21 January 2014)Read more...

Remember those in need in this Christmas season

MDA would like to thank all of our supports over the past year and extend our gratitude to those who donate so generously to help the MD community. Christmas is a time for giving and our members deserve the best care, research and opportunities, but for that we need funding. MDA encourages everyone to remember us when deciding where to spend your Christmas budget because every dollar from every donation helps.

Our recent report ‘Economic Study of Muscular Dystrophy’ revealed that the majority of people with MD fall within the low income group – more than 70% of males and 60% of females with MD have a total cash income of less than $450 per week. This is less than the minimum wage per week in 2013 (‘Economic Study of Muscular Dystrophy’: Page v). And the study also showed that raising a child with a disability can possibly cost up to two to three times more than raising a child without a disability (‘Economic Study of Muscular Dystrophy’: Page 18). It is these types of statistics that we would like you to consider and remember that families of people with MD need that extra bit of help around Christmas celebrations.

It is not only during the Christmas period that you join MDA to help those in the MD community; you can register to participate in the 2014 ‘Run for Strength’ Fun Run being held at Albert Park Lake on Sunday 16 February 2014. Click here to visit the RFS website.

Registrations are also open now to host a 2014 Superhero Day event. Events can be held at: kindergartens, childcare centres, schools, work places, community clubs, at home or anywhere else you can imagine hosting a Superhero Day occasion. Click here  to visit the event website.

Thank you for joining MDA in the fight against Muscular Dystrophy.

2014 Superhero Day for MD - Registrations now OPEN!

Lock in a date for your 2014 calendar to host an event during Superhero Week* from Monday 1st September – Friday 5th September 2014.

Events can be held at: kindergartens, childcare centres, schools, work places, community clubs, at home or anywhere else you can imagine hosting a Superhero Day occasion.

A fun and imaginative event where by making a donation anyone can dress up as their favourite superhero character or better yet, invent one of their own, to help find a cure for Muscular Dystrophy. Proceeds from the event will be going to support research at the National Muscular Dystrophy Research Centre.

Click on the 'Read more...' link to visit the official event website and download the registration form.

(19 December 2013)Read more...

Support an MDA fundraiser by buying Xmas cards and accessories

MDA would like to extend a huge thank you to one of our great supporters and fundraisers Leanne Watson from ‘Phoenix For Fundraising’ who has donated a total of $1,500 to MDA to help support care and research for the MD community over the past year. We thank you Leanne and appreciate your work.

Show your support for Leanne by purchasing some of her amazing cards and accessories, perfect for all your Christmas, New Year and other needs.  Click here to visit the ‘Phoenix For Fundraising’ Facebook page.  Click here to visit Leanne Watson's Facebook page.

Click on the Read more… link to visit the ‘Phoenix For Fundraising’ website.

(18 December 2013)Read more...

Research Update

Clinical trial of SMT C1100 for Duchenne muscular dystrophy started

Summit, a UK drug company, has announced that a boy with Duchenne muscular dystrophy (DMD) has taken the first dose of SMT C1100 in the phase 1b clinical trial. SMT C1100 is an oral drug designed to increase the amounts of a protein called utrophin in the body. It is thought that utrophin might be able to substitute for the dystrophin that is missing in boys with DMD because the two proteins are very similar.

(16 December 2013)Read more...

MDA Harley Raffle No. 55 Winner

MDA Harley Raffle No. 55 Winner

Enrico

Austral NSW Australia

Ticket No. 3898 

(11 December 2013)Read more...

Boris M Struk

'From The Desk of the Executive Director'


Well it’s that time of year again where the decorations come out, we inevitably overindulge in a roast Christmas lunch and we get the chance to reflect on the year that was. I am happy to say for MDA this year has been a year of many successes and for the most part a positive year...

(11 December 2013)Read more...

Clinical Update

Updated Information on Spinal Muscular Atrophy (SMA)


MDA's Fact Sheet on Spinal Muscular Atrophy (SMA) has been significantly updated. Click on link to read the latest clinical information.

(06 December 2013)Read more...

Superhero Day raised more than $25k with proceeds for research

The first annual ‘Superhero Day for Muscular Dystrophy’ was an overwhelming success with 100 childcare centres, schools and businesses taking part in the event around the country. The event raised an amazing amount of more than $25,000 with proceeds to support research at the National Muscular Dystrophy Research Centre (NMDRC).

Superhero Day received fantastic coverage in the news with a half page article on page 3 of the Herald Sun newspaper in August and it was featured on ABC News Breakfast nationally during Superhero Week.

Click on the 'Read more' link to read the full article...

(29 November 2013)Read more...

Research Update

New research grant to test possible MD therapy

Congratulations are in order for the researchers at the National Muscular Dystrophy Research Centre (NMDRC) – they have received a $640,000 grant from the NHMRC to expand their groundbreaking research into muscular dystrophy.

(26 November 2013)Read more...

Media Release

NDIS needs more funds or it risks being a half-baked scheme

“I am not surprised that the NDIS has already blown out by 30 per cent in its first four months of operation as we told anyone that would listen and even advised the Senate Committee that more funds are needed. Otherwise, it risks turning into a half-baked scheme with good intentions on the surface but ultimately not give the help needed to some of the most vulnerable members of our society,” said Muscular Dystrophy Australia’s Executive Director, Boris Struk.

“At this stage the predicted cost for individual plans has averaged more than $10,000 over budget going from an estimated $34,969 to $46,290. Personally, I believe this figure will just increase because the cost of care and equipment for people with a disability is enormous and some families are getting into significant debt just to keep up with the bills,” said Mr Struk.

To view the full media release, click on the 'Read more' link...

(21 November 2013)Read more...


Attend the Charity Ball to help raise money for MD care & research

You are cordially invited to the Muscular Dystrophy 'Hope is in Research' Charity Ball being held at Rydges Bell City, Preston, on Saturday 7 December 2013. All money raised from the event will go to Muscular Dystrophy Australia to support both care for those in the MD community and research in the hope to find a cure.

Cost: $150 per head or $1500 per table of 10. Ticket includes 3-course banquet style meal, beer, wine and soft drink.  There will also be speakers, entertainment, silent auctions, raffles and much more! To purchase tickets call Citisolar on 9310 5916. For more info, call MDA on (03) 9320 9555.

To download the MD Charity Ball Invite, please click on the 'Read more' link...

(13 November 2013)Read more...

Media Release

Study: MD affects someone’s wellbeing at twice the rate of cancer

“New research has revealed that compared to other health conditions, for a person with MD, more than two disability adjusted life years (DALYs) are lost each year, indicating a substantial loss of wellbeing,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

The research has been published in the new report ‘Economic study of muscular dystrophy’, produced by Deloitte Access and funded by MDA, which is an in-depth look into the financial cost of MD on both individual families and the Australian economy.

To read the full media release click on the 'Read more' link...

(07 November 2013)Read more...

InformationMD 2013 Seminar

InformationMD 2013 Seminar


On Tuesday 29 October MDA hosted its annual InformationMD! seminar at its Head Office in North Melbourne. The all-day event was a great success with the MDA Conference Room packed to capacity with attendees comprising members of the MD community, staff from schools and several service providers.

(31 October 2013)Read more...

Introducing Christina Williams - MDA Program Services Coordinator

 "Just 3 years ago, I had no idea who I wanted to be or what I wanted to do. I was so uninspired in the work I was doing that I decided it was time for a change. I applied for a one year traineeship at Belmore School; a specialist school for children with physical disabilities and health impairments. Little did I know, this would change my life."

To read Christina's full profile please click on the 'Read More' link...

(30 October 2013)Read more...


MDA Friend Raising Evening & Launch of 'Economic Study of MD'


On Thursday, 17 October, Muscular Dystrophy Australia held its annual ‘Friend Raising Evening’ at Crown Entertainment Complex, Melbourne. The event hosted by MDA provided an opportunity to network with an eclectic group of corporate, business and community leaders.

Now more than ever, MDA is seeking to forge strong partnerships with individuals and businesses to help strengthen its ability to provide the best care and service for those in the community living with MD. MDA is grateful for any communication no matter how big or small with all members of society to create a greater friend-base for the organisation.

The Assistant Minister for Social Services, Senator The Hon. Mitch Fifield, was a guest of honour for the evening and also launched the ‘Economic Study of Muscular Dystrophy’. The report, produced by Deloitte Access Economics and funded by MDA, is an updated version of the 2007 pioneering report ‘The Cost of MD’.

(24 October 2013)Read more...

Clinical Update

Updated Information on Myasthenia Gravis


MDA's Fact Sheet on Myasthenia Gravis (MG) has been significantly updated. Click on link to read the latest clinical information.

(23 October 2013)Read more...

 

MDA is pleased to introduce our new PA - Lauren Oakley


With the ever increasing demands on compliance, process and management systems, it was evident that MDA required expanding its staff experience base. The attainment of ISO 9001 Certification has added a significant positive boost to the MDA’s credibility however that comes at a cost of regular auditing.

With this in mind, MDA employed Lauren Oakley as Personal Assistant to the Executive Director with the additional role of Internal ISO Auditor. Lauren’s previous experience as Administration Officer at Victoria University (VU) placed her in good stead to meet the demands of the newly created position at MDA.

To read Lauren's full profile please click on the 'Read more' link...

 

(21 October 2013)Read more...

Take 5 magazine features: MDA Executive Director Boris M Struk


A double-page article featuring a photo of Boris Struk, his wife Ineke and their son Ryan, has been published in this week's 'Take 5' magazine.
In the article Boris talks about the early days of Ryan's diagnosis and his reasons behind the ChallengeMD! event series. Click the 'Read more' section to view a photograph of the article. Full article to be uploaded soon.

(17 October 2013)Read more...

Research discovery

Research discovers a promising alternative to steroids for muscular dystrophy

Researchers in the USA have discovered a drug that could replace the corticosteroid drugs such as prednisolone currently used to treat Duchenne MD. In studies in mice the drug – called VBP15 – worked better than prednisolone without the harsh side effects.

(30 September 2013)Read more...

Research results released

Disappointing exon skipping trial results released

In a press release GlaxoSmithKline and Prosensa have said that the results of the phase 3 exon skipping trial for Duchenne muscular dystrophy are disappointing. Preliminary results show that at the end of the 48 week trial, treated boys were unable to walk any further in six minutes than boys receiving a placebo. 

(25 September 2013)Read more...

Research Update

Diabetes research may help autoimmune disease

Exciting new research may lead to the development of treatments for autoimmune disease which is good news for the approximately 6000 Australians affected by the muscle diseases myasthenia gravis, Guillain-Barre Syndrome and chronic inflammatory demyelinating polyneuropathy (CIDP).

(25 September 2013)Read more...

 

National Superhero Week wraps up.. up.. and away!

Well what a week we had for the inaugural Superhero Day events. We have had so much positive feedback and enthusiasm about the fundraiser it has been amazing. THANK YOU to everyone who participated. On behalf of Muscular Dystrophy Australia and the 1 in 1,000 people affect by MD, we thank you. We are still tallying the total donations but will announce the final figure once it has been reached. If you have any questions or would like to provide some feedback, please call MDA on (03) 9320 9555 or email superhero@mda.org.au.

To see photos of the events visit the Superhero Day for MD Facebook page by clicking on the 'Read more' link....

"It's not who I am underneath, but what I do that defines me." - Batman

(12 September 2013)Read more...

 

Boris' Brilliant Bike Ride aired on Channel 31 Sat 14 September

A documentary titled ‘Boris' Brilliant Bike Ride’ about MDA’s inaugural ChallengeMD! event held in 2006 throughout Vietnam aired on Saturday 14 September on Channel 31.

ChallengeMD! Vietnam saw riders pedal from Hanoi to Ho Chi Minh City in Vietnam and in total the event raised over $420,000 for the MDA's Programs and Services.

The documentary aired as part of the new series Local Knowledge which started on Saturday 7 September.

To view a short video about the trip click the ‘Read more’ link…

(10 September 2013)Read more...

Research News

Another clinical trial for Duchenne Muscular Dystrophy has started

Dutch biopharmaceutical company Prosensa has announced the initiation of another exon skipping clinical trial for Duchenne muscular dystrophy (DMD). The potential drug being tested is called ‘PRO053’ and is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 53’. It has the potential to treat around eight percent of boys with DMD.

The first patient in the trial has now had his first injection of PRO053. This phase 1/2 clinical trial is designed to assess the safety, effectiveness and tolerability of multiple doses of PRO053 over 48 weeks. They will also study how PRO053 moves through the body for example the rate at which it is absorbed and excreted – this is called the ‘pharmacokinetics’.

To read the full update please click the 'Read more' link to download the full edition of Research News...

(09 September 2013)Read more...

ABC Television National News featured Superhero Day for MD

MDA Scientific Communications Officer Kristina Elvidge, and parent of a child with Muscular Dystrophy Clare Mott, were interviewed about the new MDA event 'Superhero Day for Muscular Dystrophy' by ABC National Breakfast news during Superhero Week.

The segment aired around the country on Wednesday 4 September 2013 and was filmed at Wonder Childcare, Avondale Heights VIC.

To watch the full video click on the 'Read more' link...

(06 September 2013)Read more...

774 ABC Radio host David Astle interviews MDA Executive Director

On 1 September 2013 MDA Executive Director, Boris Struk, was interviewed live in the studio on 774 ABC Radio.

Boris discusses the new MDA event Superhero Day for Muscular Dystrophy, as well as many other important issues surrounding Muscular Dystrophy.

To listen to the interview click here on the 'Read more' link...

(05 September 2013)Read more...

Superhero Day for MD featured on front page of Leader newspaper

Superhero Day for Muscular Dystrophy has been featured on the cover of this week's Moonee Valley Leader newspaper.

The full article appears on page 8.

"All children big and small will get the chance to be superheroes this week.

Wonder Childcare in Avondale Heights is one of many schools, kindergartens and childcare centres getting involved in Superhero Day for Muscular Dystrophy..."

To read the full article, click on the 'Read More' section.

 

(03 September 2013)Read more...

Mon 2 - Fri 6 September

National Superhero Week starts today! [Monday 2 September]

Where: Nationwide across Australia

When: Superhero Week (Mon 2 – Fri 6 2013)

How: You can get involved by hosting a Superhero Day at your school, workplace or home

Why: All funds raised support vital Muscular Dystrophy research

Every single state and territory across Australia will this week leave their identities at home for the day and come to school, kinder or work dressed as a Superhero to join the fight to find a cure for Muscular Dystrophy.

“We have thousands of people ready to celebrate the event and we are overwhelmed with the amazing reaction we have received from all across Australia. There is such a widespread level of support which spans from a Federal Government Department in SA, to a childcare centre in Wanneroo, WA, to a primary school in the Northern Territory,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.

(02 September 2013)Read more...

MEDIA RELEASE 

MDA writes to AFL boss to make donation from Bombers’ $2mil fine

MDA is today sending a personal letter to Andrew Demetriou to urge him to make a donation to Muscular Dystrophy Australia from the $2 million fine lodged against Essendon Football Club for the misuse of banned substances, some of which were associated with Muscular Dystrophy. “We are writing to the AFL’s Chief Executive Officer, Andrew Demetriou, to implore him to make a donation to Muscular Dystrophy Australia to support vital care and research needed for the community which has been dragged into this ordeal,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.

You can show your support by liking the following Facebook petition page:

www.facebook.com/AFLDonationtoMDA

Click the 'Read More' section to read the full media release...

(29 August 2013)Read more...

Adelaide Advertiser newspaper

 

Superhero Day national media coverage in both online and print

29 August 2013

SUPERHERO DAY FEATURED ON HERALD SUN WEBSITE AND ADELAIDE ADVERTISER NEWSPAPER

MINI superheroes at Dernancourt Primary School are making a herculean effort to support research into muscular dystrophy - a condition that affects one in 1500 South Australians...

Click on the link below to read the full article:

www.heraldsun.com.au/news/national/dernancourt-primary-school-kids-suit-up-for-a-day-to-support-muscular-dystrophy/story-fnii5yv7-1226706128727

(28 August 2013)Read more...

MDA was featured in the Sunday Herald Sun paper 25th August

Muscular Dystrophy Australia's Executive Director, Boris Struk, was featured in the print media Sunday, 25 August 2013.

Sunday Herald Sun newspaper:

An interview with Boris M Struk in the 'Body + Soul' section of the weekend's Sunday Herald Sun newspaper. Boris talks about his trek to Morocco earlier in the year for the 2013 ChallengeMD.

To read the article click on the 'Read More' section.

(22 August 2013)Read more...

MDA’s Superhero Day for MD event featured in Herald Sun, page 3


Featured in the most prominent position in today’s edition of the Herald Sun newspaper is Superhero Day for Muscular Dystrophy. A photo taken yesterday at Concord Junior Campus, Watsonia, personifies the true spirit of the event in celebrating everyone’s super powers, especially those of children with Muscular Dystrophy.


“Holy smokes, Batman! Is the Batcave big enough for this lot? Caped Crusaders everywhere are pulling on their boots and donning masks for a good cause. The inaugural Superhero Day for Muscular Dystrophy aims to support research into the condition, which affects one in 1000 Australians…”

Click ‘Read more’ to see the full article.

(14 August 2013)Read more...

Duchenne Research Results

Duchenne exon skipping trial results published

The results of Sarepta Therapeutics' clinical trial of eteplirsen have been published in a reputable medical journal. Eteplirsen is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 51’. It has the potential to treat around 13 percent of boys with Duchenne muscular dystrophy – those with a mutation in the vicinity of exon 51.

The trial showed that considerable amounts of dystrophin protein were produced in the muscles after 48 weeks of treatment and this stabilized walking ability.

(12 August 2013)Read more...

LAST DAY TO REGISTER FOR SUPERHERO DAY FOR MD!

With only two weeks until Superhero Week (Mon 2 – Fri 6 September) registrations close today (Mon 12 Aug) at 5.00pm (EST). Every registration receives a complimentary Superhero Cape along with balloons, posters and other fun things for your event!

Download the Registration Form here:

http://www.mda.org.au/Media/Publicity/Superhero_Day_Registration_Form.pdf 

MDA Superhero Capes are still available! There is no deadline to order the capes but it will take approximately one week for delivery depending on location. Download the Superhero Cape Order Form here:

www.mda.org.au/Media/Releases/Superhero_Cape_Order_Form.pdf

If you need any additional time to register or would like to find out about Postage and Handling (P&H) costs for the capes, please call MDA on (03) 9320 9555. Click the 'Read More' link to view the Superhero Day for MD Facebook page.

(12 August 2013)Read more...

New Fact Sheet

New Fact Sheet on Becker MD (BMD).

There are many types of muscular dystrophy (MD), all are genetic conditions that cause the muscles to weaken and waste away to varying degrees. Becker MD is a milder, more slowly progressing variant of the better known Duchenne type of MD. Read the the new Fact Sheet on BMD.

 

(08 August 2013)Read more...

Burnt Sugar Research

 

Burnt Sugar treatment for muscular dystrophy?

You may have seen headlines on the internet about researchers testing a substance found in burnt sugar, beer, cola and some lollies as a treatment for muscular dystrophy. Sounds like a joke doesn’t it? 

(05 August 2013)Read more...

.

Purchase an official MDA Superhero Cape now!

Do you want to be a Superhero and support Muscular Dystrophy?

You can now order the 'Official MDA Superhero Capes' to wear during Superhero Week from Monday 2 - Friday 6 September 2013. You can wear them at a Superhero Day event or you can wear them anywhere you like during Superhero Week to help support vital research and raise awareness of MD. They are a great way for everyone to be involved in Superhero Week even if you can't host the event! Capes are $9.95 ea (+ P&H).

To view more photos of the capes visit: www.facebook.com/SuperheroDayMD

Click the 'Read More' link to download the Superhero Cape Order Form.

(31 July 2013)Read more...

Clinical Trials

 

Clinical Trials: Your questions answered

A clinical trial is a carefully controlled study designed to examine the safety and/or effectiveness of drugs, devices, treatments or preventive measures in humans. Clinical trials follow a strict protocol to ensure that the testing is completed as quickly and safely as possible and accurately answers the questions being asked.

(22 July 2013)Read more...

Patient Registries

What are patient registries?


Patient registries are databases that contain information about patients with a particular condition. The registries are then used by clinical trial organisers to contact suitable trial participants and invite them to take part.

(22 July 2013)Read more...

Kristina Elvidge PhD

MDA appoints a scientific communications specialist

MDA expands its communications capability with the appointment of Kristina Elvidge PhD as its Scientific Communications Officer.

MDA’s Scientific Communications Officer, the first such role in Australia for MDA, we will ensure that the level, quality and accuracy of information disseminated shall be of the highest possible standard.

 

 

 

(21 July 2013)Read more...

'From The Desk of the Executive Director'

ChallengeMD! Morocco 2013 - Mt Toubkal assaulted me! Every step was painful, through rock and scree - two steps forwards and half a step back. Did I feel like giving up - quitting? Absolutely!!!!!!

The Spin!!

More recently, we saw another example of spin doctors touting breakthroughs for MD without citing credible scientific journals where the veracity of that science had been published and subjected to peer review. The telling and final sentence advised that this particular institution was in need of $180 million to build a new research facility. A nice segue from a “breakthrough” to “we need $180 million”.

(21 July 2013)Read more...

Superheroes to take over schools across Australia for a good cause

The first week of September this year will see primary schools and childcare centres all over Australia overrun with mini-superheroes to celebrate the inaugural charity event ‘Superhero Day for Muscular Dystrophy’.

This brand new event sweeping the nation asks children to discover their own super powers and come to school dressed up as their favourite superhero or better yet, invent one. It requests that they bring a gold coin donation to fund research to find a cure for Muscular Dystrophy (MD) with all proceeds going to support research at the National Muscular Dystrophy Research Centre. Businesses are also able to host the event by having staff dress up and have customers make gold coin donations.

View full media release by clicking on the link: "Read more..."

(18 July 2013)Read more...

Media Release

 

18% of disabled people had no social contact in last 3 months


The heartbreaking truth is that people who have a disability, such as muscular dystrophy, are often socially isolated and can go months on end without a friendly visit because it is too physically difficult to leave the house,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

A recent paper released by the Productivity Commission ‘Deep and Persistent Disadvantage in Australia’ found that 13% of people with a disability have experienced deep social exclusion.

The paper also found that around 18 per cent of people with profound limitations, such as a disability, had not had any social contact in the last three months and 59 per cent had not had a telephone call for that same period.

Click 'Read more...' to view the full media release.

(12 July 2013)Read more...

Need to hurry! Only 1 month left to register for Superhero Day 

There is only one month left to register to host a Superhero Day on any day in the first week of September 2013 with registrations closing on 12 August 2013. You can register any primary school, kindergarten, childcare centre or business from anywhere around Australia to participate.

You can download the Registration Form from the official Superhero Day for Muscular Dystrophy event website: www.superherodaymd.com.Or click on the 'Read More' section below.

You can also visit the Facebook page at: www.facebook.com/SuperheroDayMD

If you would like more information on Superhero Day or to register please call MDA Public Relations Manager, Courtney Burger, on (03) 9320 9555 or email superhero@mda.org.au.


(08 July 2013)Read more...

MDA Harley Raffle No. 54

Winner

MDA Harley Raffle No. 54 Winner

Gary J.

Sebastopol VIC Australia

Ticket No. 7733

Muscular Dystrophy Australia is now ISO 9001 Certified

Muscular Dystrophy Australia (MDA) has recently attained ISO 9001 accreditation from the International Organization for Standardization. This is a huge achievement which places MDA in a superior position in comparison to many other not-for-profit organisations. An ISO 9001 Quality Management System (QMS) offers a comprehensive framework on which to build processes that help ensure key business objectives are achieved and the standard has received widespread international recognition.

(25 June 2013)Read more...

Thank you to the People's Playhouse Inc.

'13 - A new musical' raised nearly $900 for Muscular Dystrophy

Muscular Dystrophy Australia would like to send a huge thank you to cast and crew of '13 - A new musical' and the People's Playhouse Inc as they have raised $852.40 to go towards Muscular Dystrophy care and research. We are very grateful for their generous commitment to raising funds for MD and congratulate them on such a wonderful and successful play.


The musical '13' was a Broadway hit musical presented by Peoples Playhouse from April 12 at the Cranbourne Community Theatre.

(14 June 2013)Read more...

The official Superhero Day for MD website has been launched

The official Superhero Day for Muscular Dystrophy event website has been launched today at www.SuperHeroDayMD.com.

From the website you can download the Registration Form. Additional features such as a 'Donations' page will be coming soon.
You can also visit the Facebook page at: www.facebook.com/SuperheroDayMD

If you would like more information on Superhero Day or to register please call MDA Public Relations Manager, Courtney Burger, on (03) 9320 9555 or email superhero@mda.org.au.


(12 June 2013)Read more...

ChallengeMD! Morocco trek raised more than $100,000 for MD

Over the weekend a group of exhausted yet triumphant charity trekkers returned to Melbourne from Morocco with a total tally of more than $100,000 raised for Muscular Dystrophy care and research.

The grueling 8-day trek took the group to the top of Mount Toubkal in North Africa which is 4,167 metres tall meaning it is almost twice as high as Australia’s Mount Kosciuszko and the entire adventure was organised and led by Muscular Dystrophy Australia’s Executive Director, Boris M Struk.

To download the full media release please click on the ‘Read more’ link below...

(28 May 2013)Read more...

'From The Desk of the Executive Director'

Watching the installation of our historic campaign billboard in the Café MD area by the expert crew from Signcraft, provided an opportunity for me to reminisce and reflect over this first major foray into promoting MD to the masses.

Also...The tough road ahead!

By the time you read this, together with a dedicated team of trekkers, I will be most likely half way up Mt Toubkal in the Atlas Mountains in ChallengeMD! 2013 Morocco. Through these challenges commencing with the historic cycle from North to South Vietnam in 2006, we have raised more than $2 million for MD.

(26 May 2013)Read more...

Neuromuscular Disorder Survey

"What is important for people with a progressive neuromuscular disorder?”

MDA’s focus has always been to help improve the quality of life and give hope to the individual affected by Muscular Dystrophy or one of the Neuromuscular Disorders.

MDA, together with a number of like-minded organisations, The Department of Health and Calvary Health Care Behlehem, are working to ascertain the service delivery model which will best suit our collective communities. 

(21 May 2013)Read more...

Team MDA has completed the 2013 ChallengeMD! Morocco trek

Congratulations to Team MDA for completing the 2013 ChallengeMD! Morocco trek. In total the event has raised more than $100,000 to go towards future research and also care for those in our community affected by Muscular Dystrophy. If you would like to give a donation to the Team you are still able to by visiting the ‘Sponsor a Trekker’ page on the ChallengeMD! website.

To read all about their adventure please click on the ‘Read more’ link below…  

(16 May 2013)Read more...

New face of the 2013 White Pages is MDA Executive Boris M Struk

MDA Executive Director, Boris M Struk, has been featured on the front cover of this year's White Pages, soon to be hitting your doorstop.

Mr Struk was chosen as the new face of the White Pages as part of the Keeping Our Communities Healthy campaign, which recognises the selfless Australians who go above and beyond to improve the quality of life for locals in their area.

Each year, Sensis®, the publisher of the White Pages®, recognises the efforts of local people in their communities by celebrating their achievements on the cover of its books.

Click below to see the full front cover...

(01 May 2013)Read more...

Media: Boris M Struk featured in Hume Leader newspaper

MDA Executive Director, Boris M Struk, was featured in today's edition of the Hume Leader newspaper. The article titled 'Shrugging off adversity' highlights Boris' reasons behind his trek the to tallest mountain in North Africa, departing this Friday 3 May 2013. His ultimate goal is to raise much needed funding for Muscular Dystrophy Australia. 

(30 April 2013)Read more...

Add Muscular Dystrophy Australia on Facebook!

Muscular Dystrophy Australia has a Facebook friends page and we would love for you to add us. We continually update the page on a daily basis with information on everything from upcoming events, media coverage, photos, Muscular Dystrophy news and other interesting information.

To all of our newest friends we thank you for supporting us and within just two months we have doubled our contact list with now over 1,100 people. We aim to have 5,000 friends by 2014 therefore we need your help and support to do this. Click on the 'Read more' link below...

(26 April 2013)Read more...

MDA Launches

Harley Raffle 54

MDA Launches Harley Raffle 54

The MDA's  54th Harley Raffle is a 2013 Fat Boy. This will be another "sell out" so be quick in placing your order today!

(17 April 2013)Read more...


Media: Drawing the line the tough part of disability services

Article in The Australian commenting on NDIS and disability services

(16 April 2013)Read more...

Media Release

Bob Katter's footballer tax breaks are misguided and outrage the disabled community...

MP Bob Katter has really lost touch with reality this time if he thinks giving footballer players a tax break is high on the agenda of the Australian public. His focus needs to turn to those in our community who are in need rather than those who are put on a pedestal,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.

(27 March 2013)Read more...

Signcraft's Donation - A sign of a great company…

A cockatoo feeding frenzy soon destroyed the MDA's building signage. Signcraft comes to the rescue. Read how by clicking below...

(20 March 2013)Read more...

MDA Appoints new PR & Communications Manager

MDA is pleased to introduce our new PR & Communications Manager - Courtney Burger.…

(14 March 2013)Read more...

 

4000km’s across The Indian Subcontinent. One 7hp Rickshaw, two adventurers with just two weeks to compete, complete and survive…

All in the name of Muscular Dystrophy...

(08 March 2013)Read more...

 

Vino, Pasta & Dolci while Finding Valentino ...

Close to two hundred people attended last weekend’s Finding Valentino Luncheon hosted by MDA’s Dystrophy Divas, raising more than $12,000 for MDA.

(07 March 2013)Read more...

2013 'YPA - Run for Strength' proved to be the most successful event yet with more than 1,100 participants

Albert Park was abuzz with people from all stages of life from little children excited to be out with the family, serious athletes ready to race and groups of women in their 80s who lapped up the opportunity to enjoy a nice walk around the lake on such a beautiful day.


(27 February 2013)Read more...

Another Unique Event by Dystrophy Divas  ...

Indulge in a fabulous feast of rustic Italian food whilst being entertained by authentic musicians.

Sunday 3rd March 2013 - keep the afternoon free and click here to read all about it.

 

(10 January 2013)Read more...

Launch of a New Service - for everybody, not just the MD Community...

eMDA! or Emergency Medical Details Alert is something you should never leave home without.

A credit card size USB device which holds all your emergency contact details, medical history and medications you may be using, which would be of immense value in the event of an accident or illness while you are away from home.

Your emergency and medical details can be entered on the provided PDF form with editable fields. You determine how much information you want to include on this form.

(15 December 2012)Read more...

Winner Harley Raffle #53

Long-time supporter of MDA is a Winner with Harley Raffle #53

Sometimes good people win!

This is the case with Ross D. from Gladstone in Queensland. Ross has been purchasing tickets in MDA's Harley Raffles since Raffle No. 2. Ross is one of our longest supporters. Ross' Ticket No. 3978 was drawn from the barrel and he is now the proud owner of a brand new Fat Boy and in time for Christmas. Ross, "Thanks" for your long-time support of MDA.

MDA's Multilingual Information Service

MDA's Multilingual Information Service - Turkish

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Congenital Myotonic MD has been expertly translated into Turkish.

(28 November 2012)Read more...

DMD

Research Project

DMD Research Project - Diagnosis experience and views on testing in the future

Researchers at the Murdoch Children's Research Institue (MCRI) have developed a survey for family members of individuals with Duchenne Muscular Dystrophy (DMD) and are seeking their participation in a new and exciting project. The project is  funded by the MCRI and Muscular Dystrophy Australia.

(19 November 2012)Read more...

Launch of New Association serving the Canberra ACT community - MDACTion

(19 July 2012)Read more...

MDA Launches

Harley Raffle 53

MDA Launches Harley Raffle 53

The 53rd Harley Raffle is a 2012 Fat Boy. This will be another "sell out" so be quick in placing your order today! 

(13 July 2012)Read more...

MDA announces - ChallengeMD! Morocco 2013

This is the next major event for the MDA which will now see Trekkers undertake perhaps the most gruelling challenge to-date for Muscular Dystrophy.

More than $2 million has been raised since ChallengeMD! Vietnam 2006.

Read all about it by following the link and learn how you can participate as a Trekker or Sponsor and Help Fight Muscular Dystrophy!

(09 July 2012)Read more...

MDA Trivia Night

Wednesday 25th July 2012. North Melbourne Town Hall.

Come along for a night of fun and frivolity while helping to support the MDA.

(30 June 2012)Read more...

MDA Harley Raffle 52

Long-time supporter of MDA is a Winner with Harley Raffle #52

Sometimes good people win!

This is the case with Amanda (Mandy) from Mackay in Queensland. Mandy has been purchasing tickets in MDA's Harley Raffles since Raffle No. 35. It was with the greatest of pleasure that MDA rang Mandy to advise her that Ticket No. 2705 was drawn from the barrel and she is now the proud owner of a barnd new Fat Boy. "Thanks" for your long-time support of MDA, Mandy.

MDA Executive Director's blog

'From The Desk' - False Prophets

These peddlers or false prophets, build up artificial hope, invariably fleece or con tens of thousands of dollars for miracle cures and cause so much harm in a soul-destroying way when the cure does not work.

Any information claiming 'cure' from non-accredited sources should be read with a bag-full of salt.

(23 June 2012)Read more...

Melbourne Cup - Americain - visits MDA

Americain, was the 2010 Melbourne Cup winner. Part owner, Colleen Bamford recently visited the MDA with the Melbourne Cup, Americain's jockey silks and winners sash.MDA Staff and Futures participants had first hand experience with the Melbourne Cup and memorabilia.

(08 June 2012)Read more...

First Announcement

InformationMD! 2012

InformationMD! 2012

The MDA's annual information seminar InformationMD!  2012 will be conducted on Wednesday 25th and Thursday 26h October 2012 in the MDA Conference Centre in North Melbourne.

Program details to follow...

Boxing Legend calls for Community Support in the Fight against Muscular Dystrophy

Former boxing legend Barry Michael will make an exclusive appearance at the Muscular Dystrophy Association’s (MDA) Friend Raising Evening at the Crown Entertainment Complex on Wednesday 20th June..

(06 June 2012)Read more...

Research Update

Research Update

An international team led by the University of Melbourne has found that increasing a specific protein in muscles could help treat Duchenne muscular dystrophy.

(15 May 2012)Read more...

Multilingual Information - SMA (Arabic)

MDA's Multilingual Information Service - Arabic

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on SMA Type I has been expertly translated into Arabic.

(18 April 2012)Read more...

Muscular Dystrophy featured at Flemington VRC - Charity Raceday

MDA receives signifiacnt profile on course at the prestigious Flemington Racecourse. MDA Members, donors, supporters and members of the general public heard all about MDA, its programs and services with live interviews broadcast on-course and full page editorial in the day's race program.

(30 March 2012)Read more...

Victoria Police

Supports MD

Victoria Police Detective Training School Supports MD

The Centre for Investigator Training, Detective Training School Course 228 B was pleased to present MDA Client Services Manager Marie Fleming with the product of their class investigation...

(29 March 2012)Read more...

MD
Education Seminar!
2012

MD Education Seminar! 2012

MD Education Seminar 2012 - a comprehensive multidisciplinary seminar, presented the latest and up to date information for anyone involved with students in the education system who are affected by Muscular Dystrophy.

(24 March 2012)Read more...

All Aboard

 All Aboard - Accessible Journeys Everywhere

All Aboard wants all buses, trains and trams, supporting infrastructure and service information to include the needs of all Victorians. Universal access is a human right and we need action NOW from Government and transport operators to ensure that we are all aboard.

(13 February 2012)Read more...

MDA Launches

Harley Raffle 52

MDA Launches Harley Raffle 52

The 52nd Harley Raffle is a 2012 Fat Boy. This will be another "sell out" so be quick in placing your order today!

(25 January 2012)Read more...

(31 December 2011)Read more...

MDA Harley Raffle No. 51

Winner

MDA Harley Raffle No. 51 Winner

Phillip S. of Bunbury Western Australia

Ticket No. 13093

(16 December 2011)Read more...

ACES

Melbourne ACES Hitting MD for a "Home Run"...

Melbourne Aces Baseball has teamed up with MDA to hit MD out of the ball park. The partnership will see a week devoted to the promotion of MD and associated fundraising activities. Members of the MD Community and friends are invited to attend the family day in support of MD... 

(12 December 2011)Read more...

 

MDA Annual Christmas Party

The Annual MDA Christmas Party. Santa's Christmas Spectacular was a huge hit with family and friend. See pics from the day below...

(28 November 2011)Read more...

"From The Desk"  - Donor Fatigue - We Can Fight It!!

You all know about driver fatigue and the physical manifestations connected to it.

All the warning signs are there with driver fatigue… the heavy eyes, your wits are sluggish and that overwhelming sensation of tiredness engulfs you.
Donor fatigue is not much different to this.

For us humble charities, we are experiencing the worst donor fatigue I have seen, in more than 25 years of my involvement with MDA.
Australian charities fear donor fatigue amid mounting natural disasters around the world this year.

(23 November 2011)Read more...

ChallengeMD! 2011 Mongol Rally - Half-way point reached...

Leon M Struk and Ian Casey, TeamMDA have reached the hal-way point in their epic charity journey. Pictures and real-time GPS of their journey accessed below...

(20 August 2011)Read more...

Senator Launches New MD Website

Senator the Hon Jan McLucas, Parliamentary Secretary for Disabilities & Carers, Launches New Australian Website To Help Manage Duchenne Muscular Dystrophy

Launching the website at Muscular Dystrophy Australia’s headquarters in Melbourne today, Parliamentary Secretary for Disabilities and Carers Senator Jan McLucas said the Australian Government-funded portal will, for the first time, enable information about Duchenne Muscular Dystrophy to be available from one location.

 

(11 August 2011)Read more...

National Disability

Insurance Scheme

The Government has just announced that they share the vision for a National Disability Insurance Scheme and will begin laying the foundations for its introduction.

(11 August 2011)Read more...

ChallengeMD! 2011 Mt Blanc

Seventeen Trekkers return triumphant, conquering Mt Blanc – covering more than 190km through three countries and ascending more than 9,000 meters and raising $200,000 for MD Research.

 

 

(02 August 2011)Read more...

General Motors

MDA Donation

General Motors - Commodore Missions

Muscular Dystrophy Association (MDA) will receive a loan of a Holden Commodore today as part of Commodore Missions, a program designed to thank the wider community for making Commodore Australia’s best-selling car for 15 years. 

(31 July 2011)Read more...

Aussie Farmers Direct Supporting MDA!

See how to get the best produce and support MDA at the same time...

(31 July 2011)Read more...

Winter Nights In...

Want a way to distract yourself in the winter months, whilst supporting a good cause?

 

(31 July 2011)Read more...

Trivia Night ChallengeMD! 2011 Mongol Rally

Friday night saw the MDA Conference room packed to the rafters with more than 140 participants in the Trivia Night. A huge success read more about it...

(22 June 2011)Read more...

MDA Harley 50

Winner!

Long-time supporter of MDA is a Winner!

Sometimes good people win!

This is the case with James M. of Wabell Heights in Queensland. James has been purchasing tickets in MDA's Harley Raffles since Raffle No. 1. It was with the greatest of pleasure that MDA rang James to advise him that his Ticket No. 12770 was drawn from the barrel andhe is now the proud owner of a 2011 Fat Boy. "Thanks" for your long-time support of MDA, James.

ChallengeMD! 2011 Mongol Rally - Team MDA

15,000 kilometers of desert, mountains, dirt tracks and bandits in a tiny car.. that's the adventure Melbourne based aircraft engineer and photographer Leon M Struk (33) along with Irish born, San Francisco based business executive Ian Casey (38) will be heading off in late July in a bid to raise much needed funds for Muscular Dystrophy Australia.

 

(15 May 2011)Read more...

Dad to Dad Weekends!

The aim of the Dad’s Initiative Program is to offer fathers of people with a disability the opportunity to meet other dads and to develop the confidence, skills and networks they need to take an active role in the support of their son/daughter with a disability.

 

 

(05 May 2011)Read more...

"We Do Care" Gala Dinner in support of MD!

A night of fun, entertainment by The Three Tenors and much, much more. Come and support the MDA, full details below.

 

 

(29 April 2011)Read more...

ChallengeMD! 2011 Mt Blanc Sponsor a Trekker

Seventeen Trekkers have committed to Fight for MD while undertaking the arduous task of Trekking around Europe's tallest mountain, Mt Blanc. Help them to raise the essential research dollars by sponsoring their efforts.

With less than two months before the Team heads off, now is the time to sponmsor a Trekker and take advantage of a financial year end tax break.

Follow the link to sponsor a Trekker...

 

 

(01 April 2011)Read more...

Research & Information Session - Geelong

Dr. Jason White of the National Muscular Dystrophy Research Centre will give a talk on: What research is being done to increase knowledge around Muscular Dystrophy, Medical advances that are on the horizon for better diagnosis and management of MD; and What research might bring to in the future to the MD community...

(16 March 2011)Read more...

Run Melbourne

for

MDA


On Sunday, 17 July 2011, Run Melbourne, presented by The Age will be held once again, offering participants a half marathon, a 10km run and a 5km run or walk starting and finishing at Federation Square. New in 2011, is the free Run Melbourne health and fitness expo (Thursday, 14 July - Saturday, 16 July) and a 3km Kids Event (Saturday, 16 January). We look forward to seeing you at the start line.

Click on link to go to Sponsorship Page to support MDA.

(07 March 2011)Read more...

Run For Strength - Albert Pak Fun Run a Huge Success!

Sunday 20th February saw the successful conduct of the third Run for Strength fun run around Albert park Lake.

The event has raised an amazing $63,378 bringing the total to a spectacular $150,136.

Funds raised through Run for Strength will be dedicated to MD Research through the Muscular Dystrophy Research Foundation and scientists at the National Muscular Dystrophy Research Centre.

Congratulations to organisers Ozi Akyildiz and Sam Quattrone for the drive and energy which makes this event a huge success for MD Research.

Click the link below to see pictures from the event.

 

(24 February 2011)Read more...

Accommodation

Support

Exploring Innovation in Accommodation Support

A seminar to give people with disabilities and their families the opportunity to hear from a range of inspiring speakers who have tackled the question of “accommodation” in creative, personalised and life giving ways, while meeting some of the most complex of needs.

(15 February 2011)Read more...

Join MDA and "Run for the Kids 2011"

Many of us spend time at the Royal Childrens Hospital with our children, and receive first class medical support from some very amazing professionals.

To show our support and appreciation, MDA are inviting individuals, family and friends to join our "Run for the Kids" team on Sunday April 17th to walk/run 5.7km

(08 February 2011)Read more...

Free Course...

Navigating

the DHS system

Are you confused by all of the changes in the DHS system?

VALID is runnning a FREE course designed to assist parents/families to get updated  on the many changes in the disability services area and to utilise all resources available, eg. ISP's.

It will also assist families to consider the role they are currently playing and look at areas they wish to change, such as, greater involvement in how planning happens for their family member.

Expressions of interest need to be submitted to VALID by 16th February - see link below.

(03 February 2011)Read more...

  Latest Translation MDA Information Service

MDA's Multilingual Information Service - Greek

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Myotonic MD has been expertly translated into Greek.

(21 December 2010)Read more...

 

Harley Winner

MDA Harley Raffle # 49 - Winner Announced

The winner of MDA Harley Raffle No. 49 is:

Ticket No. 06401 Mark C. of Lithgow NSW It took some convincing Mark that it was not a "prank" call. Congratulations and Thank You to all ticket buyers for Supporting the work of MDA.

"From The Desk" 

2010 has flown by and as you know, so much has happened nationally, state wide and at MD Headquarters The Home of MDA. One federal and one state election, the breaking of the drought, and increased interaction with the Federal Government have all presented opportunities to further the MD cause.  The lead-up to each election provided ample opportunity to showcase MD research, MDA programs and table issues.

(06 December 2010)Read more...

Music Dance Arts

Proudly sponsored by Jason Coleman’s Ministry of Dance; this event is a unique opportunity to have some fun in support of Muscular Dystrophy Australia.

A must attend event for any Melbourne PA who knows how to have a good time.  Places are limited so sign up early to avoid disappointment.

(26 November 2010)Read more...

MDA

Christmas

Campaign


(25 November 2010)Read more...

Latest Translation - Information Service

MDA's Multilingual Information Service - Afghanistan (Dari)

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Friedreichs Ataxia has been expertly translated into the Dari dialect.

(23 November 2010)Read more...

InformationMD! 2010

Prof Eric Hoffman presents at InformationMD! 2010

A capacity audience filled the conference facility at the MDA National Headquarters to hear Prof Eric Hoffman and key experts in the area of MD at InformationMD! 2010.

(18 November 2010)Read more...

Registry Launch


MDA Launches National Duchenne MD Registry  

The Hon David Davis, MLC, Shadow Minister for Health officially launched the all-new National Duchenne Muscular Dystrophy Registry in front of the Australian neurological medical community...

(15 November 2010)Read more...

InformationMD! 2010

Annual Seminar

InformationMD! 2010

The MDA's annual information seminar InformationMD!  2010 featuring key presenter - Prof Eric Hoffman will be conducted on Wednesday 17th and Thursday 18h November 2010 in the MDA Conference Centre.

Full program details and downloadable PDF located at link below.

(29 October 2010)Read more...

MDA
Orchestra Victoria
NGV International

MDA Orchestra Victoria & NGV International - Marvelous Music for MD

The annual Orchestra Victoria concert in support of MDA with a capacity audience.

(21 October 2010)Read more...

Mobil Quix Safety comes first and MDA benefits

MDA receives a surprise bonus from Mobil Quix.

(10 September 2010)Read more...

ChallengeMD! 2011 Mt Blanc Information Night

Already registered? Interested to learn more about this exciting way to help fight MD?

Together with RAW Travel, MDA is hosting an information night at the MDA Centre on Wednesday 10th November 2010 at 6.30pm.

Follow link to read all about ChallengeMD!  2011 Mt Blanc and full details on the information night.

 

(01 September 2010)Read more...

MDA Launches
Harley Raffle 49

MDA Launches Harley Raffle 49

The 49th Harley Raffle is a 2010 Fat Boy Lo with magnificent custom paintwork provided by John Kral of Kral's Creations. This will be another "sell out" so be quick in placing your order today!

(17 August 2010)Read more...

DOJ Supports


Muscular Dystrophy

Department of Justice Supports Muscular Dystrophy

MDA member Kim Jago works for the Department of Justice (DOJ) and has been a strong advocate for the work undertaken by the MDA.

A visit by the DOJ staff to the MDA Centre resulted in a cheque presentation.

(28 July 2010)Read more...


"Run Melbourne"

Run Melbourne - Fun Run

Support MD by sponsoring one of the many runners participating in Run Melbourne on Sunday 18th July. The most recent registrant is Alecka Patralakis daughter of Strathmore North Primary School Vice-Principal. 

 Click on link below to visit the site and make your donation.

(14 July 2010)Read more...

Harley Raffle 48
Winner

 

MDA Harley Raffle 48

Winner of MDA's Harley Raffle 48 is Chris from West Australia with Ticket Number 14001. Congratulations Chris!!!

DMD TV Profile
Dancing with the Stars

DMD - "Dancing with the Stars"

Tamara Jabber member of ARIA award winning pop group has chosen to support Duchenne Muscular Dystrophy through Save our Sons in Channel 7's Dancing with the Stars.

(25 June 2010)Read more...

MDA Clinic Opening

MDA Neuromuscular Clinic Opening

An Australian first, one-stop clinic for neuromuscular disorders that is dramatically reducing the number of visits families make to The Royal Children’s Hospital (RCH) was officially launched by Hon Bill Shorten MP, Parliamentary Secretary for Disability and Children’s Services.

(13 June 2010)Read more...

"From The Desk" 

There was a book that I bought a long time ago called “I Bought a Ticket to Paris but Ended up in Rio”. The title alone has a lot of significance to my personal and professional life and I find myself thinking about that title often. My interpretation of the meaning behind the title is “I thought I was getting one thing, but was given another, which was out of my control”....

Recently, the title of this book has come to the forefront of my mind once more, in a professional sense. My ‘ticket to Paris’ is MDA and the respect and reputation that has been built over the past 25 years. The ‘Ended up in Rio” is when I realise that no matter how hard you work for your credibility as an organisation, there are other people who may threaten to damage it without consideration or fore thought, all for the sake of a quick buck. 

(01 June 2010)Read more...

My Diverse Australia a full-page feature in Sunday Herald-Sun!

My Diverse Australia is featured in Australia's highest selling Sunday newspaper, Sunday Herald Sun on page 33.

Purchase your copy of this critically acclaimed book. This is one way of supporting the vital work of the MDA.

This beautiful, unique and large-sized book will look right at home on your coffee table or equally comfortable in a corporate board room.

Follow the link to read the latest and to place your orders.

(21 March 2010)Read more...

Kurt Barnes

Golfer Kurt Barnes appointed MDAmbassador!
 
Aussie Golfer Kurt Barnes has been appointed as MDAmbassador.
 
"It's an honour to become an MDAmbassador for MD as I have lost a close family member to Duchenne MD."
 
Click on link for full article.

 

(14 March 2010)Read more...

News Flash!

PTC 124

Results Announced!

PTC 124 Results Announced!

PTC Therapeutics, Inc. and Genzyme Corporation announced preliminary results from the Phase 2b clinical trial of ataluren, an investigational new drug, in patients with nonsense mutation Duchenne/Becker Muscular Dystrophy (nmDBMD). The primary endpoint of change in 6-minute walk distance did not reach statistical significance within the 48 week duration of the study. Study results showed that ataluren was well tolerated and no clinical trial patients discontinued treatment due to an adverse event. Additional efficacy analyses are underway in patient subgroups. 

(05 March 2010)Read more...

 ChallengeMD! 2010


Sunday 21st February saw the successful conduct of the second Run for Strength fun run.

The event has raised an amazing $46,562 and combined with the inaugural event has contributed $86,758 for MD Research.

Funds raised through Run for Strength will be dedicated to MD Research through the Muscular Dystrophy Research Foundation and scientists at the National Muscular Dystrophy Research Centre.

Click the link below to see the results and pictures from the day.

(21 February 2010)Read more...

Melbourne Storm meets with MDA

Melbourne Storm players take time out from their rigorous training schedule to meet with members of the MD community and to help promote “Run for Strength” at Albert Park Lake on Sunday 21st February.

(12 February 2010)Read more...

National

CampMDA 76

National CampMDA 76 - Huge Success

Over 90 campers, carers and support staff from around Australia descended upon Camp Manyung in Mt Eliza to celebrate the week-long 76th National CampMDA.

(24 January 2010)Read more...
 

Musicians, Motor Racing Drivers, Singers and Boxers have something in common?

Wayne Gardner, Sir Richard Branson, Anthony Mundine, Mark Seymour, James Reyne, Jon Stevens, Mark "Jacko" Jackson, Holly Valance,
Brett Tucker, Carla Bonner, Ben Mendelsohn and Isabel Lucas are just some of the people who all represent an eclectic group throwing their support behind MD and contributing to My Diverse Australia.

 
You can now place your order for this unique and beautiful coffee-table book by following the link.
(06 November 2009)Read more...

MDA & Orchestra Victoria Partnership

An enduring partnership with Orchestra Victoria, NGV International and Muscular Dystrophy presents our annual event. 

(05 November 2009)Read more...

Christmas
Cards
MDA Christmas Cards

Now is the time to order your Christmas Cards. MDA have a selection of contemporary personal cards, ideal for family, friends and business.

Your order will assist the MDA with the provision of support services, respite programs, information services and scientific research.

To view our samples or to download  an Order Form --->

(05 November 2009)Read more...

MDA Annual Christmas Party 

A magical Christmas wonderland of fun that members of the MD Community, family and friends will never forget.

(04 November 2009)Read more...

Triumphant Trekkers Return ChallengeMD! 2009 Nepal 

ChallengeMD! 2009 Trekkers retuned triumphant, having conquered the dizzy heights of Nepal and raised more research funds for MD Research through the Muscular Dystrophy Research Foundation in support of scientists at the National Muscular Dystrophy Research Centre.

An opportunity still exists to sponsor the supreme efforts of our Trekkers - to read about the challenge or to sponsor a Trekker, click on the following link...

(03 November 2009)Read more...

Su's Garden

Supports MD

Australian Open Garden Scheme 

On display as part of the Australian Open Garden Scheme, Su's Garden in Glen Iris will be open to the public 7-8th November 2009, between 10:00am and 4:30pm. Net proceeds are being donated to the Muscular Dystrophy Association.

 

(13 October 2009)Read more...

ChallengeMD! 2009 Nepal 

An opportunity to sponsor ChallengeMD! 2009 Trekkers is still available before they head of on the 16th October to trek Nepal.

Funds raised through this arduous event will be dedicated to MD Research through the Muscular Dystrophy Research Foundation and scientists at the National Muscular Dystrophy Research Centre.

To sponsor a Trekker, click on the following link...

(10 October 2009)Read more...

 

 

 

 

Sunday 25th October 2009 the Ivanhoe Golf Course will play host to the Run For Strength Charity Golf Day.

A 10am Tee Off after paying a $50 registration fee to compete Ambrose with four players per group.

Trophies to the winning team.

Registrations to Sam 0416 199 927 or Ozi 0400 080 372

 In support of the Muscular Dystrophy Research Foundation

 

 

 

 

 

Champion boxers Kostya Tszyu, Barry Michael, Sam Soliman & Paul Briggs - have united in the FightMD Campaign.

Launched on Sunday 16th at Sam Soliman's "Return of the King" bout "Box on the Docks 6", the FightMD campaign has set the stage for MDA's national awareness campaign aimed at print and TV media.

 

(16 August 2009)Read more...

MDA Video Feeds!

MDA's Latest Additon - Video Feeds! 

The MDA's Video Feeds! designed to provide easy access to all our current video resources.

(16 August 2009)Read more...

Ullrich Congenital MD Translation
Urdu

MDA's Multilingual Information Service - Urdu

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Ullrich Congenital MD has been expertly translated into: Urdu.

(15 August 2009)Read more...

Beach2Border Cycle Challenge 2009

The Beach2Border Cycle Challenge was created by a group of social riders, keen to challenge themselves by riding from the beach at Port Melbourne, to the border of Victoria and NSW at Echuca/Moama.

In support of DMD Research at the NMDRC.

(02 August 2009)Read more...

Stay Up-to-Date with MDA's RSS Feed

MDA now has RSS feeds available.  This service ensures you have the news at your fingertips as soon as it's added to our site.

(28 July 2009)Read more...

Pride of Australia


MDA Executive Director - Boris M Struk's contribution to the MD Community recognised

Boris was a standout winner who has shown enormous dedication to raising awareness and crucial funding for muscular dystrophy in Australia.” said Peter Blunden, Managing Director Herald & Weekly Times.

(08 July 2009)Read more...

Great Ocean Walk

NAB Team Supports MDA  through the Great Ocean Walk.

A team building exercise to raise funds for the MDA.

(07 July 2009)Read more...

Harley Raffle No 46

Harley Raffle No. 46 and the Winner is!!!!!

Murray T. of Warragul Victoria - Ticket Number 10385.

Congratulations! Thank You to all all supporters who helped to make Harley Raffle No 46 a "Sell Out".

Nikon - MDA - FIFA World Cup Qualifier "What a combination!"

MDA was invited by NIKON to participate in the Field Photographer Program during the 2010 FIFA World Cup Asian Qualifiers on the hallowed turf of the MCG on 174th June 2009.  We have full details and a collection of photographs taken during the event in our Events section.

(19 June 2009)Read more...

Duchenne Translation
Turkish

MDA's Multilingual Information Service - Turkish

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Duchenne MD has been expertly translated into: Turkish.

(18 June 2009)Read more...

Duchenne Translation
Polish

MDA's Multilingual Information Service - Polish

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Duchenne MD has been expertly translated into: Polish.

(17 June 2009)Read more...
Entertainment
Books
 Entertainment Books are Back!

To order your copy of the 2009-2010 Entertainment Book follow the link.

(14 June 2009)Read more...

Duchenne Translation
Hindi


MDA's Multilingual Information Service - Hindi

MDA has added more information on MD to its Multilingual Information Service.
The latest Fact Sheet on Duchenne MD has been expertly translated into: Hindi.

(12 June 2009)Read more...

ChallengeMD! 2009 Nepal

 

ChallengeMD! 2009 Nepal Information Night

Already registered? Interested to learn more about this exciting way to help fight MD?

Together with RAW Travel, MDA is hosting an information night at the MDA Centre on Tuesday 12th May 2009 at 6.30pm. Conatct MDA to RSVP on 03 9320 9555.

MD Calendar

"What's On!"

MD Calendar of Program Services & Events

An easy way to see what programs, services and events have been scheduled by the MDA. Click on the "What's On" logo or...

(04 April 2009)Read more...

 

Announcement

ChallengeMD! 2009 Nepal 

We are excited to announce the next ChallengeMD! for 2009.

Previous participants have requested a change from cycling to trekking. So trekking it shall be, through the mountainous terrain of Nepal.

(17 March 2009)Read more...

 

 

Australia's Biggest Book Group - Creates Volumes of Support for MD - 7 National News story 

7-Eleven together with MDA present Australia’s Biggest Book Group.

Would you like to be part of this year’s most sophisticated fundraising event?

More than 100,000 book enthusiasts are estimated to sign up to Australia’s Biggest Book Group, an all-new innovative and informal book club, which aims to raise more than $500,000 towards Muscular Dystrophy research and care in Australia.

Be part of the fun by joining Australia’s Biggest Book Group.

 

Details of this chic and classy event --> 

(16 March 2009)Read more...

 

MDA's Annual
Teachers' Seminar

MDA's Annual Teachers' Seminar a big hit with teachers!

The annual Teachers Seminar saw a fantastic turnout from many schools, it was an innovative way to pass on a wealth of information regarding children affected by muscular dystrophy and their integration into the schooling system.

(03 March 2009)Read more...
"From The Desk"

 
 
MDA Executive Director, Boris M Struk, talks about the direction of MD and the latest developments.

To read about this, click on the pic or here.


MDA National Survey
National NMD Survey

Completed responses to the Muscular Dystrophy National Survey
are returning at a significant rate and already we are surprised at some of the preliminary results and comments. Particularly from residents living in Queensland.  Access Economics have been contracted to tabulate and interpret these results and put forward recommendations for subsequent action. This is the first most comprehensive national survey of Neuromuscular Disorders to be undertaken and will be of significant importance and benefit the national MD community.

Click here for further details and Registration process.

 


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Muscular Dystrophy Limited
111 Boundary Road North Melbourne VIC 3051
Australia

Phone +61 3 9320 9555
Fax+61 3 9320 9595

ACN 122 847 161

Muscular Dystrophy Association Inc
111 Boundary Road North Melbourne VIC 3051
Australia

Phone +61 3 9320 9555
Fax+61 3 9320 9595

ABN & DGR 33 376 893 530 Assoc Reg No. A 14397Z

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