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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...

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...

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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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