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A new message from the MDA Executive Director Boris M Struk

We are already half way through 2014, where has this year gone?

I know like for many of you the days and weeks seem to slip by and all of a sudden I’m shocked by the fact we are now closer to this year’s Christmas than last Christmas.

Over the past year I have had the privilege of being the 79th President of the Rotary Club of Essendon, a role which was both challenging and rewarding. My presidency has just ended and I am thankful for the experience. I also thank the club for their support as they made a donation to Muscular Dystrophy Australia of $6,000 to help with the building of a meeting room on the second level of our Head Office. A highlight of my term was visiting Myanmar on official duties with other Rotarians in April.

During the trip we visited The Eden Centre (very similar to MDA’s Futures Program) for children with disabilities, a few of which had Muscular Dystrophy... [CONTINUES]

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

(01 August 2014)Read more...

MEDIA ALERT: MDA on Channel 9’s Today Show Mon 1 Sept 7.50am

In very exciting news, MDA would like to announce that our Executive Director Boris M Struk has been scheduled to be interviewed in a live cross from a school celebrating Superhero Day for MD with Channel Nine's Today Show on Monday morning 1 September 2014.

Boris will be chatting to Karl Stefanovic and Lisa Wilkinson via video link on the first day of 2014 National Superhero Week.

Date: Monday 1 September 2014

Time: Approximately 7.50am

Where: On Channel Nine's Today Show

About: 2014 National Superhero Week

Tune in and make sure to catch the interview live! We will also be posting a link to the segment once we obtain it.

(29 August 2014)Read more...

YOU CAN STILL REGISTER TO HOST A SUPERHERO DAY!

It’s not too late to register! We are still accepting registrations for Superhero Day for MD.

The publicised closing date has now been reached but we are still welcoming all late registrations.

As soon as you register you receive all information via email so you can start planning your event immediately and a hard copy kit will be posted within 3-5 days. You can also still order capes as long as you leave 5 business days for them to be posted to you.

For more information call MDA on (03) 9320 9555.

To download the Registration Form or Cape Order Form visit the event website at: www.superherodaymd.com

(22 August 2014)Read more...

Media Release

More than 20,000 participating in National Superhero Week

The second annual National Superhero Week for Muscular Dystrophy being held in the first week of September (1-5 Sept 2014) has already doubled its predicted participation from last year and is taking the country by storm with more than 20,000 people involved.

“Registrations for this year’s National Superhero Week have already far exceeded our expectations with all types of organisations and schools set to host the event; from schools with 1,500 students to stores of national companies such as Hairhouse Warehouse, Telstra, Masters and more taking part,” said Muscular Dystrophy Australia’s Executive Director Boris M Struk.

“We have every state and territory across the country on board for the event from childcare centres in rural Western Australia to several Telstra stores in New South Wales, and everywhere in between. Raine & Horne Real Estate in Darwin is in fact hosting a week-long Superhero waterfront event,” said Mr Struk...[CONTINUES]

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

(14 August 2014)Read more...

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...

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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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