From the Desk – October 2009
In February, Labor Senator for Queensland Jan McLucas brought the problems of MD quite compellingly to the attention of politicians in Federal Parliament. Senator McLucas spoke to our country’s leaders with a focus on the need for improved services, research and support of our MD community.
Highlighting again the need for a national registry for Duchenne Muscular Dystrophy, Senator McLucas explained that we are seeking government funding for the development of a national database of DMD patients that would then feed into the global database managed in Europe. Together with several groups, the MDA have lobbied the government for a number of years for the establishment of the register which is supported naturally, by the families of children with DMD and the MD research community.
The proposal for a national DMD registry has now been referred to the Clinical, Technical and Ethical Principles Committee of the Australian Health Ministers Advisory Council for consideration. Senator McLucas urged the committee to look favourably on the proposal.
The Royal Children’s Hospital in Melbourne was singled out in parliament, specifically MDA’s pioneering “Neuromuscular Clinic”, or “Muscle Clinic” as it is known in the MD community. Several years ago, MDA recognised the need for numerous doctor and specialist visits to be combined into one visit for families to minimise stress on children and parents and to increase the emotional wellbeing of patients. Senator McLucas spoke of this solution that should be replicated in other centres around the nation.
The National Muscular Dystrophy Research Centre was held in high esteem by Senator McLucas, who praised the efforts of the dedicated research facility that accelerates the rate of research into MD. National CampMDA which conducted its 76th instance in January was highlighted as a practical and vital support service to the community, to both campers and carers who are undergraduate students. MDA has trained more than 2,000 students as part of the MDA Student Placement Program.
Boris M Struk
MDA has tirelessly lobbied federal parliament for over a decade for funding, recognition and awareness for Muscular Dystrophy. The dedication shown by staff and supporters to speak and be heard on issues that matter the most will not be forgotten. Senator McLucas has stood behind us and given us some volume in our mission to provide the best services, support and research we can for the one in 1,000 Australians affected by a neuromuscular disorder. I would like to thank Senator McLucas on behalf of our community and encourage her to continue to help us be heard on a federal level.
MDA would like to recognise the enormous efforts of Ozi Akyildis and Sam Quattrone for the success of Run for Strength Fun Run at Albert Park Lake in February. In its second year, the attendance doubled to over 500 participants. There were a great number of sponsors on board and more than $45,000 was raised bringing the total to over $86,000.
Ozi has shown great support to MDA and has tirelessly fundraised through this event in an effort to further research to benefit his son and others in the community affected by Duchenne Muscular Dystrophy.
It was heartwarming to see so much support and so many familiar faces at the fun run, championing our cause.
My Diverse Australia
The My Diverse Australia coffee table book is now available for purchase through the MDA website. The project was born several years ago as an encore to the successful Melbourne’s Delights. My Diverse Australia features many high profile Australians (with honourary Aussie Sir Richard Branson included) who have taken photos of their favourite places in our beautiful country.
My Diverse Australia is designed to raise awareness and vital funds for MDA. I was honoured to be able to enlighten the participants on Muscular Dystrophy and the challenges facing our community, with several committing to becoming MD Ambassadors and coming on the journey with us. The My Diverse Australia week-long exhibition will commence on Friday 14th May at Smart ArtZ Gallery. More details will be posted on site nearer the exhibition.
On a personal note – The research developments, services and specialised care that Senator McLucas spoke of in February makes me extremely proud of what MDA has achieved over the past twenty years. Part of our mission statement is to give Hope to those in the MD community. My youngest son Ryan is affected by Duchenne MD. In 1983 my wife and I were told Ryan would not survive past 14 years.
Ryan turned 30 years old on the 16th of February 2010. There is Hope, there are advancements. I encourage you to celebrate all milestones with your loved ones with great fervour. It’s an incredible feeling.
Until next time,