From the Desk – November 2009

We have been working diligently and with enthusiasm to gain support for the Australian MD Community. The passing of this year has eclipsed all preceding as here we are with 2010 approaching at lightning speed and 2009 almost over.

It’s time to take a breath and look at where we have been and inform everyone on where we are going. It has been another year of striving to deliver the best practice services to the MD community; running three hugely successful National CampMDA’s, weekly  OperationMD ShortBreak, and a Futures program which exemplifies just what can be achieved when we desire the best for our community. We have also conducted a wide range of support groups, information sessions and expanded research efforts at the National Muscular Dystrophy Research Centre.

We have also addressed the growing need for expert information required for use by schools where a child with MD is or will soon be enrolled. The demand comes from around the country – from Darwin to Dubbo , Narabeen to Northcote and all the places in-between. Two highly informative Education Seminars were conducted at the MDA Centre to ensure that teachers and aides are confident and comfortable in their knowledge of Muscular Dystrophy and the integration of children with MD into their schools. The education package has been distributed to teachers and has been an intense project at MDA, one we wanted to devote our time to for the benefit of the education system around the country.

With the “sub-prime “ induced global financial crisis and the devastating effects of last summer’s bushfires, the availability of donors and their dollars has had a major impact on many organisations. While we (MDA) have been largely shielded from the diminution of donor income, due largely to our sound and ethical business practices we have still felt the flow-on effect.

I have seen many changes politically over the past couple of decades regarding funding, healthcare and more recently, stimulus packages and priority health areas. While it is sometimes frustrating to feel that Muscular Dystrophy has flown under the Government’s radar, it also motivates me and the many supporters of Muscular Dystrophy – Australia to become a voice that must be heard at state and federal levels.


I take it with great heart that on my visits to Canberra to Federal Parliament, I am not only speaking for my family, but so many families who rely on the MDA to fight on behalf of the MD community to gain funding for vital services and research.

We continue to be very active in the political arena and I had previously advised of our presentation to a Caucus Committee. The ramifications are indeed positive and ongoing discussions are being held at various senior bureaucratic and political levels for a positive outcome for the Australian MD Community.

One area that governments of all persuasions have neglected is the consideration and recognition of the work and value MDA provides in delivering a raft of programs and services which save our Government millions of dollars.  For example, with over 2,000 tertiary education students extensively trained through the National CampMDA Student Placement Program there is an estimated $2 million dollar saving. MDA’s support of the MDA Neuromuscular Clinic and CINRG also sees a saving exceeding half a million dollars.

And given the MDA’s Access Economics report – Cost of Muscular Dystrophy highlighting an annual cost of over $6 billion it is with some consolation to see that the Government through the NHMRC will provide $800,000 for DMD research!

More still needs to be done and our quest for funding, recognition and awareness of MD in the greater community is stronger than ever. With the passion and positivity of both the staff at MDA and all MDA supporters, I am confident that the sky is no longer the limit, we can reach higher, we will reach for the stars and settle for no less – because Muscular Dystrophy is something worth fighting for!

I wish you and your family all the best for the coming New Year. – Let’s stand united in our fight against MD.

Until next time,