From the Desk – April 2009
So much has happened since the rollover to 2009, the pace at MDA can only be described as frenetic.
The year started with National CampMDA in January, attracting campers from all points of the compass. Now here we are in early April, with the second CampMDA for 2009 being held in Maldon, in the region which saw the gold boom of the 1800’s. I hope that surrounding ourselves in the history of the gold rush will translate to more positive outcomes for the MDA and the members of its community even though we are in a period of economic uncertainty.
The significant fundraising event which was born through ChallengeMD 2007 Cambodia was Tour Duchenne. 25 riders pedalled from Sydney to Melbourne, raising over $650,000 for research. The riders crossed the finish line at the National Muscular Dystrophy Research Centre in its new home at Parkville’s Murdoch Children’s Research Institute. Please read the double page spread on pages 10 & 11of the latest edition of Messenger.
Armed with the significant findings and recommendations of the Access Economics Report “Cost of Muscular Dystrophy”, we can now intensify our long-standing political lobbying efforts for a “fair go” for members of the national MD Community.
These efforts were recognised at the federal political level and an invitation was extended to present to a Caucus Committee in Canberra in March. At the Caucus Committee, MDAmbassador Laurie Stroud and I put forward the case for support of MD in the strongest of terms which was well received by members
Boris M Struk
One of several issues raised in our submission to the Committee, advised that in MDA’s opinion, the National Health Priority Area (NHPA) discriminates against disorders such as Muscular Dystrophy. The high case burden of MD relative to other disorders in the NHPA and Multiple Sclerosis (MS) is evident. MD’s case burden is: 14% greater than cancer, two times greater than cardiovascular disease, three times greater than MS and 12 times greater than diabetes. The total economic impact exceeds $6 billion per annum. Despite these startling figures, the most modest levels of financial assistance sought by MDA from the federal government to the 10 program areas identified by Access Economics, would have the most profound and positive impact on the national MD Community.
I strongly encourage all members of the Australian MD Community to contact me at the MDA to add your weight, your voice and your support for these efforts to further programs, services and research funding for Muscular Dystrophy. We have established a national approach and program to effectively liaise with all federal members to add their weight to your voice for a call for support. Help us to help you!
For a number of years we have also been campaigning for the establishment of a National DMD Register. Given that potential genetic therapies have been identified, the introduction of such a register is now more critical than ever to effect tailor made solutions for specific genetic defects in DMD. Preliminary work undertaken by Dr Monique Ryan through a study involving all Australian paediatricians by the Australian Paediatric Surveillance Unit, may be a model for a national registry of boys with Duchenne Muscular Dystrophy.
This model, will form the basis of our submision to a national committee, to which I have been appointed, charged with formulating a response to the federal government for the establishment of a National DMD Register. Rest assured, this has been a high priority for our research efforts and we will work tirelessly to ensure the Register comes to fruition. I shall keep you briefed on the progress of the Committee’s work through the Messenger and my Report here at The Home of MDA.
We have been working diligently and with enthusiasm to gain support for the Australian MD Community. Let us see what 2009 brings in federal government response.
Until next time,