How a devastating diagnosis inspired a passion for health and medical research

The Incredible Story of Megan Donnell 

When the rare and devastating Sanfilippo Syndrome struck Megan Donnell’s family, she responded by setting up a $3 million Foundation to fund high-quality medical research into the condition. 

Sanfilippo Syndrome is an extremely rare, genetic disorder which causes progressive brain damage. Currently, there is no cure. Reeling from the news that their own two children had been diagnosed with Sanfilippo Syndrome, the Donnell family were reportedly told by doctors “not to bother chasing cures because there aren’t any.” Ms Donnell resigned from her role as a management consultant to establish the Sanfilippo Children’s Foundation.

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Australian leads development of world’s largest MS database

Melbourne University’s Professor Helmut Butzkueven has tonight been awarded Research Australia’s Data Innovation Award for his incredible work developing MS Base, the world’s largest Multiple Sclerosis (MS) database sharing, tracking and evaluating clinical data in more than 55,000 people with MS from 33 countries.

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Top Award for Australian Paediatrician Professor Kim Mulholland

The illustrious Peter Wills Medal was tonight awarded to Professor Kim Mulholland for his lifetime of research to improve the health of children in developing countries. Prof Mulholland has focused on childhood pneumonia, in particular, the evaluation and introduction of new vaccines for the prevention of pneumonia in the developing world.

In a research career spanning more than 30 years, Professor Mulholland has dedicated himself to leading transformative child health research projects across Africa, Asia and the Pacific with incredible outcomes.

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The young researcher using zebrafish to understand progressive muscle weakness

Seventy per cent of human genes are found in zebrafish and it’s this incredible commonality which has helped Monash University early career researcher Dr Avnika Ruparelia to better understand the causes of progressive muscle weakness.

At last nights annual Health and Medical Research Awards held by national advocacy body, Research Australia Dr Ruparelia received the Griffith University Discovery Award for her ground-breaking research into the causes and therapeutics for a group of late onset muscle disorders known as myofibrillar myopathies.

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Winners Announced | 2017 Research Australia Health and Medical Research Awards

Research Australia is delighted to announce the results of the 2017 annual Health and Medical Research Awards, now in its 15th year.

Acknowledging talent and excellence in our sector is not only a key part of Research Australia’s role in advocacy for health and medical research, it is also paramount to encouraging future generations of great researchers.

We are proud to announce the winners in the following categories:

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Federal Budget 2018/19 – Have Your Say

The Assistant Treasurer has called for ideas for next year’s Federal Budget to be submitted by 15 December 2017.

Research Australia is working on its submission and is looking for suggestions from our membership.

Have an idea for something that should be funded by the Commonwealth Government but isn’t?

An area that deserves more funding than it currently gets?

Research Australia wants to hear from you.

Please send your ideas to Greg Mullins or call Greg on 03 9662 9420.

As an example, here is a link to Research Australia’s 2016 pre-budget submission.

Human Research Ethics Committees (HRECS)

Earlier this year, the Productivity Commission handed the Australian Government its report on Data Availability and Use and Research Australia is working with the Taskforce within the Prime Minister’s Department who is developing the Government’s response. A particular area of focus for us, as the national peak body for the medical research pipeline, is the Productivity Commission’s recommendations on Human Research Ethics Committees (HRECs).

Read the full blog on the Flying Blind Volume 2 website.

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Why online health records help us all

Friday 1 September 2017

In an era of big data, the opportunity to harness the masses of information, including personal health records, through better collection, linkage and access, has the potential to transform our health systems and the way we deliver healthcare.

The more a doctor who is treating you knows about your medical history (and the quicker that history can be accessed) the better chance you have of it saving your life. If you are in an accident, unconscious and seriously hurt, then you really want those taking care of you to be able to access all your information about allergies, illnesses and medical history. It could make the difference between life and death.

You might assume doctors in various parts of the health system can already access your information, when the reality is that in most cases they cannot.The Australian health system is fragmented and information is not easily shared between the various GPs, medical specialists, private clinics and hospitals you visit over a lifetime. This means the data a medical professional looks at might not be complete or you may have to recall your own history repeatedly. This can lead to poor diagnoses and increased cost to the health system, with every repeat test and scan that might otherwise have been avoided.

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Joint statement on skilled migration visa changes

Tuesday, 4 July 2017 | Media Release

Restoration on skilled visas welcomed across medical technology, biotechnology and pharmaceutical sector.

The restoration of key occupations for the medical technology, research and pharmaceutical sector to the skilled migration visa list has been welcomed by six representative organisations. Having participated in submissions and consultations, the combined peak body group is pleased the Government has addressed concerns that were widely shared across the medical technologies, biotechnologies and pharmaceuticals industry sector and the health and medical research sector.

The revised list of occupations is an important step for which there is significant acknowledgment and relief that the attraction of highly-skilled individuals will not be thwarted and demonstrates continued support for Australia’s competitive advantage in life sciences innovation. Continue reading “Joint statement on skilled migration visa changes”

Changes to NHMRC’s Grant Program

The eagerly awaited changes to the NHMRC’s grant program have been announced this morning. As Research Australia and many others in our sector have advocated for, they are a combination of elements from the models proposed in the consultation paper issued in the middle of last year. Importantly, these changes reflect much of the advice provided to the review panel from the sector.

Research Australia welcomes the reforms announced and notes that there is never ‘a perfect solution’ but that these changes are a positive step in the right direction and address key issues flagged by the sector. Research Australia also commends the efforts of the NHMRC CEO Anne Kelso AO and the Expert Advisory Group chaired by Professor Steve Wesselingh.

The stated aims of the changes are to:

  1. Encourage research that is more creative and innovative
  2. Provide opportunities for Australia’s best health and medical researchers at all career stages, and
  3. Minimise the burden on researchers in preparing and reviewing grant applications, allowing them to spend more time on research.

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