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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...

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...

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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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