2015 International MJD Research Conference
Addressing the first ever International Conference on Machado Joseph Disease (MJD) held in Australia on 28/29 August, the Chairperson of the Anindilyakwa Land Council (Groote Eylandt) and MJDF Board member Mr Tony Wurramarrba AO stated 'there are people all over the world who have MJD and for all of us learning more about MJD is the key to finding the hope that is so badly needed for future generations'. He went onto say that 'now that we know that the disease is a family disease and that is passed on from parents to children and there will be even more of our families affected by MJD, it has become even more important to understand the disease'.
There is currently no cure for MJD, with over 624 Indigenous Australians at risk of the disease in 12 remote communities in the NT and QLD. These numbers are likely to continue to grow as MJDF extends its work and learns of more families that are affected.
The conference was hosted by MJDF and attended by the world's leading expert researchers and neurologists from Australia, Portugal, Brazil, Israel, England, Germany and China. A key highlight was the discussions between researchers and those individuals and families directly affected about the future directions of research into this debilitating disease. The conference also included a number of presentations updating the latest international research into MJD, whilst also examining various practical examples of interventions to treat symptoms that aim to improve the quality of life of people living with the disease.
MJDF Board member Jenny Baird has lost her husband to MJD and has two children, both of whom have MJD. She stated that ‘this conference is a dream come true and offers real hope that an eventual cure will be found''. Ms Baird went onto say 'how critical the conference has been in providing an opportunity for individuals and families living with MJD to hear from the world's top researchers first hand and to encourage them to continue their vital work'.
A further highlight of the conference was the research findings from MJDF's own commissioned research through the Anzac Instistute / Brain and Mind Institute / University of Sydney, that has now successfully secured a grant from the National Health and Medical Research Council (NHMRC). This work was initially made possible through a visionary $1 million donation in 2009 from the Anindilyakwa Land Council and Traditional Owners of Groote Eylandt from their own mining royalties.
At a time when the research is starting to identify some promising results and move to human clinical trials for potential treatments, the researchers identified that the issue of access to the required funding remains a key issue across the international community.
A key outcome of the conference was agreement therefore that MJDF should play a key leadership role in facilitating international collaboration towards the discovery of treatment and an eventual cure for MJD, and ensuring the views of those individuals and families most affected directly influence the direction of current and future research.
Executive Officer of MJDF Ms Nadia Lindop stated that 'MJDF was particularly grateful to those sponsors who made the conference possible, including the Anindilyakwa Land Council, NAB, South 32, Arnold Bloch Leibler, Groote Eylandt Lodge and Airnorth'.
MJDF Chairperson Neil Westbury stated 'this conference again highlights the importance of MJDF's work and its consistent ability to punch above its weight. It also brings into further perspective the short sighted and inexplicable decision of Minister Scullion to overturn a previously approved and publicly announced $10 m grant from the Aboriginals Benefit Account to MJDF. Those monies were to be invested in perpetuity in order to support the critical work of the MJDF' he said.