From the Desk – December 2008

I must have blinked, because here we are with 2008 almost at its end. It just goes to show that the busier one is the more swiftly time passes.

In terms of making history, the MDA achieved a remarkable result in the long sought justification of the economic impact or “cost of MD“ on our society.  After years of planning for a national survey, a recruitment program was established which ultimately saw over 650 people from all over Australia participate in responding to a comprehensive questionnaire. The highly respected team from Access Economics were engaged to analyse the raw data and prepare the final report which was launched by The Hon Bill Shorten MP, Parliamentary Secretary for Disabilities and Children’s Services.

The report reveals that the cost of the disease is estimated at $1.5 billion a year, or the equivalent of a financial burden of $126,000 per person affected by muscular dystrophy each year. This figure includes health care costs, aids and equipment, personal care, transport and productivity lost due to lower employment, absenteeism and premature death. 

It also shows that if all neuromuscular disorders covered by the Muscular Dystrophy Association are considered, the cost would exceed $6 billion a year.


Boris M Struk

January 2008

The MDA now has the “ammunition” to escalate the Fight for MD and a concerted effort has been maintained in the federal area with regular visits to and dialog with bureaucrats and political leaders in Canberra.

Only good can come from these efforts in which we have invested a considerable degree of human and financial resources to ultimately benefit the National MD Community.

This year also saw two major meetings held in Melbourne with exceptionally positive outcomes. The 7th Asian Oceanic Myology Centre (AOMC) Scientific Meeting, and the MDA’s own InformationMD! 2008 two day seminar. Held over 3 days, 300 people attended these meetings at the Langham Hotel on the banks of the Yarra in Southbank. It was a frantic time for MD staff and volunteers who worked tireless to ensure all attendees were looked after.

AOMC attracted scientists and delegates from the Asia-Pacific region, with leading speakers providing high quality presentations which added significantly to the knowledge pool. It was a fantastic opportunity for information and advanced scientific research initiatives to be exchanged and discussed.

InformationMD! 2008 saw expert information on a wide range of topics delivered to a lay audience and the agencies and disciplines that support them. This meeting was designed for members of MDA and the wider community to understand the many aspects of MD and be informed of new developments in the research field.

These two meetings set the scene for future research development. Several new research programs will come to fruition shortly. Again, these programs will have a significant impact on the National MD scientific scene.

Research comprises of two very important components; scientific intellect and crucial funding to translate scientific theory to practical and timely solutions.

One of our most important fundraising events was highly successful again this year, ChallengeMD! 2008 China. A grueling bike ride through China that saw much needed financial commitment for MD from all the sponsors involved. Personally, it was an amazing experience once again, where the not so young body was exposed to the extremes of heat, humidity and the one constant over hundreds of kilometer being pedal, pedal, pedal….  What is gratifying is the end result. The combined rides through Vietnam, Cambodia and China have raised OVER $1 million for MDA.

It never ceases to amaze me through all the twists and turns that life can offer that participation in ChallengeMD! 2007 Cambodia would see the birth of the next major event in 2009, Tour Duchenne. Aussie ex-pat Julian Thompson created the idea of Tour Duchenne whilst training for ChallengeMD 2007 Cambodia. The aim is to raise a $1 million for MD research through one bike ride.

March 2009 will see participants complete a mammoth 1200 km riding from Sydney to Melbourne. Each rider must raise over $40,000 to be eligible to participate. The National Muscular Dystrophy Research Centre in Melbourne and the Institute for Neuromuscular Research in Sydney will be the beneficiaries of this event.

Raising this kind of money for a bike ride won’t be easy, but will be achieved if everyone jumps on board. I encourage everyone to visit the Tour Duchenne Rider Page, pick a rider and sponsor their amazing journey. Together, we’ll achieve our goal of raising $1 million for MD.

Well, what a wonderful start to 2009 with the Tour Duchenne in March. Of course there are many more events and programs planned for the year ahead at the MDA. To facilitate the promotion and exposure we need to promote Tour Duchenne and our many programs and services delivered by both the MDA and NMDRC, we have engaged the services of Lyndsey Doherty. Lyndsey is excited to join our team under the Public Relations banner, and we look forward to working together to make MD awareness prominent in all communities across the nation.

I’d like to wish everyone a safe and happy holiday season, and a fantastic 2009. Let’s drum up support and awareness for MD to make this year a breakthrough year for everyone in our MD family.

Through this support we will convert our collective Hopes, Dreams and Aspirations into Reality.

Until next time,