Research Australia grassROOTS autumn 2013

ISSUE THREE 02 Partnering for Cures Conference New York November 2012

03 Telethon Adventurers to Give $1.8M

04 World-first laser treats Australia’s leading cause of blindness

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The Australian Hearing Hub

06 Searching for answers to gut pain

07 If the Philanthropic Hat Fits

Wear it and Support Mental Health Research on Hat Day this October 2013

08 Queensland Scientists Easing the Pain for Children with Cystic Fibrosis

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Work’s the thing!

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Save the date

11 New website has the facts for better hearing health

12 How are Australian women ageing?

13 Lethal bug on Flinders hit-list 13 Translational Funding

RESEARCH AUSTRALIA

Opportunities from the Wellcome Trust

14 The world’s largest

Cerebral Palsy study

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Editor’s Corner

AN ALLIANCE FOR DISCOVERIES IN HEALTH

AUTUMN 2013

Autumn 2013

Partnering for Cures Conference New York November 2012 Last year I was privileged to go to the Faster Cures Annual conference in New York. Its objective is to facilitate cross-sector collaborations and solution sharing to speed up the time it takes to turn discoveries into therapies.

Michael Milken, Chairman of the Milken Institute and Founder of FasterCures opened the conference claiming that health and medical research was the main driver of economic growth. He pointed to the 50% increase in life expectancy in Asia over the last 50 years and how this was currently fuelling world economic growth.

The conference featured 16 dynamic, outcomes focused discussions including topics such as how social media is changing research norms, how the results of the 2012 US election would impact medical research, and how insurers are impacting the research and innovation agenda.

In the break out sessions there were presentations from 30 innovators in cross-sector collaboration, from the Mayo Clinic to the Myelin Repair Foundation, describing their efforts to commericalise early-stage discoveries, share data, develop novel research tools, repurpose assets, and create innovative financial models to drive progress.

Of particular interest to me was the similar issues faced across the world, we in Australia know the realities all too well: the pathway to treatments and cures is littered with failure, lack of funding, scientific and regulatory challenges, reimbursement issues, healthcare delivery issues, the daunting list goes on.

The role of the patient in the research process moving beyond ‘guinea pig’ to being involved at all stages of the research and development process was very much in the spotlight. Patients are now in the board room, and through their fund raising efforts, they are also the venture capitalists, prepared to take risks that the normal capital markets are not willing to take. It is a new empowered philanthropy, and the corporate world and indeed the research world ignore the power

of the patient at their own peril.

A good example of collaboration was presented by the Crohn’s & Colitis Foundation of Canada and Vertex Pharmaceuticals. This sponsored research program is a unique business model in that both a nonprofit organization and a biotech are providing joint funding to early-stage discovery research being conducted at several academic centers across Canada. The three-year collaboration includes two rounds of grant funding to novel research aimed at identifying the underlying disease mechanisms and drivers of Inflammatory Bowel Disease (IBD). This joint investment to better understand the underlying biology of IBD has the potential to lead to better and expedited treatments for patients living with IBD. Another interesting collaboration to speed up delivery of effective therapies was the linking up of Sanofi with the Michael J. Fox Foundation for Parkinson’s Research (MJFF). MJFF and Sanofi are collaborating to explore the potential use of a dormant Sanofi compound, AVE8112, in the treatment of Parkinson’s disease. Trial results will be owned by MJFF and shared with Sanofi. This is an excellent example of a novel approach using philanthropy to enhance our collective ability to tackle complex diseases.

Clearly these types of funding models reduces the investment risk for the pharmaceutical company, and their shareholders, with special interest group funding, who have a greater risk appetite when investing in their area of interest.

But it’s not just about the medical side, health and wellness was also featured at the conference. Vicki Seyfert-Margolis, Senior Advisor on Science Innovation and Policy at the FDA pronounced “we don’t pay for wellness!”. She stated that 90% of US health expenditure is for

SAVE THE DATES Research Australia Events for 2013 • 3rd Annual Philanthropy for Health and Medical Research Conference, 20 – 21 August, 2013, Location: Amora Hotel Jamison Sydney.

• The Wellcome Trust new grant process Lecture and networking drinks In Sydney 25 March 3.30 – 6.00pm In Brisbane 26 March 7.00am for 7.15am start In Melbourne 27 March 4.00 pm – 6.00 pm see our website for more details

care and treatment and less than 10% is spent on prevention and wellness. Her session highlighted the current problem western society faces is obesity, and the need to re-engineer how we live our lives to over come it. It was the same problem with smoking 25 years ago and she claims obesity needs to be attacked in the same way.

My take-outs were that it is such an exciting time for health and medical research, and humankind as the secrets of the genome are unlocked. All this while internationally we are still hampered by uncertain financial markets and governments battling debt. New ways of working together, and new types of collaborations for both funding, research, and translation to practice need to found.

So at Research Australia, the theme for our 3rd annual Philanthropy for Health and Medical Research Conference is ‘Collaboration for Better Health.’ I hope to see you there.

Elizabeth Foley Chief Executive Officer Reserach Australia

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Telethon Adventurers to Give $1.8M In only their second year of operation, The Telethon Adventurers have achieved an extraordinary result – raising $1.3 million in 2012. A further $500,000 gift took the total for distribution to $1.8 million.

Founder and Chair of The Telethon Adventurers, Rick Parish, said they celebrated a very successful second year of their partnership with Channel 7’s Telethon and Perth’s Telethon Institute for Child Health Research.

“The Telethon Adventurers achievement was an outstanding result particularly given that our total costs incurred for the year was less than $14,000!” said Rick.

“The people involved in our adventures and fundraising activities continue to amaze me with their spirit, generosity, sense of community and involvement.

“Hope really does inspire change, butACTION is the key...something we are very good at!

“The Telethon Adventurers really are making a difference – one adventure at a time!”

Rick thanked everyone involved in supporting their fundraising work for childhood cancer research in 2012!

Dr Nick Gottardo, co-lead of the Brain Tumour Research at the Telethon Institute, said that investment by The Telethon Adventurers in both people and the latest technology was enabling them to forge

ahead with their life-changing research.

Some of the amazing adventures undertaken in 2012 include: July 2012 – Chamonix Challenge Six Adventurers took on the challenge of climbing one of Italy’s highest mountains, Gran Paradiso. Telethon Adventurers founder, Rick Parish, was the only climber to summit while the other adventurers reached a more than admirable altitude of 3300m amidst snow and hail storms and raised $119,321.40.

started in Perth on October 27. The 12 riders travelled south through to Esperance and then back to Perth through Kalgoorlie before crossing the line at the Convention Centre on Telethon Weekend. They covered 2,100 km in 14 days and raised just over $500,000.

In February 2013, Western Australia will host the world’s leading brain tumour surgeons and researchers at the Global Symposium on Childhood Brain Tumours, funded by the Telethon Adventurers.

Eleven Adventurers took an iconic convoy of Harley Davidson’s and Mustangs from Las Vegas to Hollywood, taking on the heat of Death Valley and enjoying the sights of Mammoth Lakes and San Francisco and raised $120,371.50.

The concept of this symposium was conceived

by Rick Parish as a strategy to find more effective treatments and hopefully one day a cure for childhood brain tumours. In particular, Rick hopes the Telethon Adventurers can help find a cure for medulloblastoma, the type of brain cancer that affected his son Elliot.

October – November 2012 – Woolworths Ride for Elliott

If you would like more information or would like to become a Telethon Adventurer visit:

The 2012 Woolworths Ride for Elliot

www.theadventurers.com.au

August 2012 – Tour for a Cure USA

2013 Adventure Calendar Kokoda for a Cure – April Take on one of the world’s most challenging treks that threads through World War II battlefields.

Tour de Gracetown – March and November The South West of WA’s premier bi-annual bike ride.

Chamonix Challenge – July Rick Parish will escort a team of Adventurers to the French and Italian Alps.

Jump for a Cure! – October An adrenalin-fuelled tandem skydive.

KPMG Ice Marathon – November Antarctic Ice Marathon, 80 Degrees South only 650 miles from the South Pole.

The Team in action on the slopes

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Autumn 2013

World-first laser treats Australia’s leading cause of blindness Age-related Macular Degeneration (AMD) is an incurable eye disease and the leading cause of vision loss in Australia.

While there are treatments available to manage some forms of the advanced disease, these are invasive (involving injections into the eye) and expensive, representing the third largest expense on the Pharmaceutical Benefits Scheme ($237 million in 2010).

CERA’s Head of Macular Research, Professor Robyn Guymer, stressed that the Bupa Health Foundation partnership is critical in enabling CERA to extend the study to conduct more detailed testing of other parameters that will shed light on the benefits and mode of action of the laser.

The Centre for Eye Research (CERA) is conducting a world-first study to investigate whether an Australian developed nanosecond laser technology, Retinal Rejuvenation Therapy (2RT), can be used to successfully slow, or even reverse, the progression of AMD in its early stages.

Unlike traditional lasers used to treat retinal eye disease, a nanosecond laser designed

by South Australian company Ellex Medical Lasers Ltd, delivers a tiny pulse of energy to the back of the eye, which triggers a response that will hopefully have beneficial effects on the retina and disease.

“We’ll also be able to assess how 2RT is affecting the retina throughout the study, rather than waiting until the end,” said Professor Guymer.

The laser was first piloted in a small-scale study in 2009 – 2011, funded by the Victorian Government’s Science Agenda Investment Fund. Due to the success of this pilot study, funding was sought to conduct an extended clinical trial.

In 2011, CERA was awarded a National Health and Medical Research Council (NHMRC) Project Grant to begin the next phase of the clinical trial. In addition to this, the nanosecond laser project was selected from a vast pool of high-calibre research projects to receive a Bupa Health Foundation Health Award in 2012.

Specifically, the support of the Bupa Health Foundation will facilitate retinal functional studies (sensitivity of the eye to light) in high risk groups across sites involved in the

In 2011, CERA was awarded a National Health and Medical Research Council (NHMRC) Project Grant to begin the next phase of the clinical trial.

multi-centred trial. This will help determine whether testing sensitivity is a reliable predictor of the development of AMD in high risk groups.

“Bupa Health Foundation invests in initiatives and partners that have the potential to make a real difference to

improving Australian health and healthcare.

This support means that great ideas are turned into real action,” said Dr Christine Bennett, Chair of the Bupa Health Foundation Steering Committee.

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Professor Robyn Guymer

Autumn 2013

The Australian Hearing Hub Although the Australian Hearing Hub doesn’t officially open its doors until April 2013, work is already well underway as researchers, hearing organisations and service providers begin moving into their new home on the Macquarie University campus.

The Australian Hearing Hub is a revolutionary independent research facility that fosters innovation. Inspired by the interdisciplinary research environment at the University, it offers state-of-the-art facilities and a melting pot of expertise and knowledge.

This ground-breaking, national and international collaboration houses the best in technology and unites the best in research to benefit clients and consumers quality of life. When the moves are completed and everyone has settled in, over 2000 professionals from some of the country’s best hearing and allied health organisations, together with staff, students and researchers from one of the country’s leading research universities, will collaborate on world-leading projects.

The building is remarkable. Purpose-built, it houses outstanding facilities such as the National Acoustics Laboratories and the world’s first child magnetoencephalograph (MEG) – part of the ARC Centre of Excellence in Cognition and its Disorders.

But the extraordinary research projects are only part of the story.

One in four Australians will experience some form of hearing loss by 2050. The Australian Hearing Hub promises to become a onestop shop for speech and hearing diagnosis, treatment and therapy. Partners Australian Hearing, the National Acoustic Laboratories, Cochlear Ltd, the Royal Institute for Deaf and Blind Children, the Sydney Cochlear Implant Centre, The Shepherd Centre and the ARC Centre of Excellence in Cognition and its Disorders will provide a full spectrum of services and support for clients at every stage of their lives.

new technologies and the delivery of services,” said Professor Janet Greeley, Dean of Macquarie University’s Faculty of Human Sciences.

“The Hub is also building links with other research groups, here and across Australia, as all its members are part of the Hearing CRC. We’re also building up links with international groups, some of whom will be attending launch and inaugural conference.”

related to hearing loss across the lifespan,” Professor Greeley said.

“We’ll also be building our medical research in this area, in relation to cochlear implants and other work, and the close proximity to the Macquarie University Hospital is another great benefit, as well as it being just across the street from a world leader in hearing assistive technology group: Cochlear Ltd.”

Macquarie University has relocated its clinics in speech and hearing sciences and psychology into the facility alongside the other partners. It is recognised for teaching and research excellence in these areas, and will give students a unique opportunity to work alongside experts in industry providing an unrivalled learning experience.

The conference – Language, literacy and cognition in children with hearing loss – will bring together national and international experts to discuss research and share developments, and showcase the unique facility to inspire new collaborations.

Despite being only weeks old, collaborative research is already well underway. Dr Teresa Ching, Senior Research Scientist at the National Acoustic Laboratories explained how a joint project with Macquarie University researchers is looking at whether universal newborn hearing screening programs, designed to detect hearing loss soon after birth, improves long-term outcomes for children with hearing impairments. Early findings from the Longitudinal Outcomes of Children with Hearing Impairment study have already been adopted by Australian Hearing to streamline processes for early referrals for cochlear implantation.

“We’re working closely with partners to provide a central point for clinical and educational services for people who need support with hearing loss, and a hotbed for research and innovation in

“The theme of the conference demonstrates the breadth of the kind of research that will take place here. This particular conference is focussing on children, but we’re looking at research

Associate Professor Catherine McMahon, head of audiology at the University, also outlined several projects running involving the University’s academic community and the skills and expertise of the resident partners.

“My team and I have developed objective tests to measure the amount of listening effort that a person with a cochlear implant needs to understand simple words in quiet and noisy conditions.”

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Autumn 2013 “My team and I have developed objective tests to measure the amount of listening effort that a person with a cochlear implant needs to understand simple words in quiet and noisy conditions’� she said. “This aims to give us a better understanding of how the individual copes with conversation in the real world. We have also developed objective measures of how the individual processes timing and pitch cues that can influence their ability to understand speech. “We’ve also been investigating the neurophysiological changes that occur in the brain in individuals who have tinnitus throughout a remediation program. In this way, we can better differentiate between neurophysiological and psychological impacts of tinnitus and its relief.�

Along with Associate Professor Blake Johnson and Professor Stephen Crain from the University’s ARC Centre of Excellence in Cognition and its Disorders, McMahon has been working on the development of a novel MEG system for cochlear

implants to help better understand the neurophysiological changes that occur in adults and children after cochlear implantation. This is the first system of its kind in the world to be able to measure brain changes magnetically using conventional cochlear implants.

Of particular interest at the inaugural conference will be research by Dr Mridula Sharma and her colleagues, who are investigating the role of visual processing, selective attention and working memory on speech perception in noise in children.

Their findings – that auditory processing or listening is linked to reading development in children – will no doubt have profound impacts on education, support and treatment for all children, both hearing and hearing-impaired.

development, and the lives of hearing impaired Australians forever.

For more information on the Australian Hearing Hub conference, please visit www.hearinghubconf2013.org.au For more details on the Longitudinal Outcomes of Children with Hearing Impairment study, visit www.outcomes.nal.gov.au The Australian Hearing Hub is an initiative of the Australian Government being conducted as part of the Education Investment Fund.

With the combined experience of its many partners, and the most advanced technology in the world at its heart, the Australian Hearing Hub promises to change the world of hearing research and

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Searching for answers to gut pain Irritable bowel syndrome is a common gastrointestinal (GI) disorder which impacts up to one in five Australians, yet ")) ÂĽ$PSFZ#VUMFS +1( the cause of the condition is unknown.

Now, researchers from Flinders University are using newly developed technologies to better understand what causes unexplained gut pain, or functional GI disorders, when other more serious conditions such as bowel cancer, Crohn’s disease and colitis have been ruled out. “Everybody at some stage or another will get pain from their gut due to an infection or inflammation but when it happens regularly, most of the time there’s no detectable reason,� said Professor Simon Brookes, who is leading the research. “Aside from pain and discomfort, functional GI disorders can cause a raft of symptoms including bloating, gas, diarrhoea and constipation, and while these conditions often don’t develop into anything more sinister they can be very unpleasant and distressing,� he said.

Professor Brookes, who heads the Human Physiology Department at Flinders, said the three-year study would seek to understand how different sensory nerves in the gut

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carry pain signals to the central nervous system, where it is translated into pain and discomfort.

Using intestinal tissue from humans and animals, Professor Brookes said the researchers would study the mechanisms by which normal and abnormal movements of the intestinal tract activate the sensory neurons that mediate pain. “We already know that movements in the gut, particularly gas and distension, give rise to pain but we don’t understand why that is because we don’t understand ")) ÂĽ$PSFZ#VUMFS +1( how pain sensory neurons should work normally,â€? he said. “In a lot of cases IBS doesn’t just come out of the blue, it often follows an infection and we think that’s because the pain detectors become hypersensitive for long periods after the infection is gone, but again we don’t understand why that is.â€?

He said the research team – which includes Flinders Drs Philip Dinning, Nicholas

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Spencer and Vladimir Zagorodnyuk – would use new technologies to measure movement and pressure in the gut “more accurately than ever before�.

The same techniques, he said, could also be used to explain baffling cases of pain in other areas of the body. “Although we’re studying the gut, unexplained pain occurs in other parts of the body too and we think the pain fibres in the gut are very similar in other parts of the body. ")) ÂĽ$PSFZ#VUMFS +1( “So if we can understand the cause of gut pain, we might be able to apply it to other ailments like headache, bladder pain and period pain.â€?

The research is being funded through a $537,065 grant from the National Health and Medical Research Council’s 2013 funding scheme, bringing the total pool of funding awarded to Flinders researchers to $6,215,636 across 13 projects.

Autumn 2013

If the Philanthropic Hat Fits Wear it and Support Mental Health Research on Hat Day this October 2013 In 2005, after struggling with severe Bipolar Disorder for 25 years, Ian Parker tragically lost his life to suicide.

This year Ian Parker’s sister, Carol Smit, founded the first Bipolar research fund to be established in Australia. The fund is called the Australian Rotary Health Ian Parker Bipolar Fund PhD Scholarship, and will further support mental health research initiatives that continue to improve the health lives of Australians suffering from a mental illness.

Mental illness affects one in five Australians every year, contributing to over 2,500 annual deaths through suicide. It is the third biggest health problem behind cancer and heart disease and, according to the World Health Organisation, is expected to be the leading cause of disability by the year 2020.

Since 2000, Australian Rotary Health has invested nearly $24 million on research grants and scholarships in universities and hospitals around Australia focused on mental health research, of which the Ian Parker Scholarship is one example.

Australian Rotary Health is now one of the largest non-government funding bodies for mental health research in Australia.

Joy Gillett, CEO at Australian Rotary Health noted, “It is our intention to be a catalyst for projects that will improve the quality of life for those that are least able to assist themselves”, “We are achieving this through research projects most recently focused on the mental health of young Australians.”

Historically Australian Rotary Health has been supported by Rotarians and Rotary Clubs Australia-wide. Its very establishment in 1981 was the result of a meeting at the Rotary Club of Mornington, Victoria where founder, Ian Scott, expressed his intentions to create a funding body for research into the causes of SIDS,(Sudden Infant Death Syndrome). They have since extended their scope to reach the broader community

need and welcomed many new commercial supporters to their cause. A total of $29 million has been raised over 31 years.

In 2011 Hat Day for Mental Health Research was established as the first national action and awareness day of Australian Rotary Health. The day is aims to reduce the stigma surrounding mental health issues and promote the need for more research into mental illness.

hats in Melbourne’s City Square breaking the Guinness World Record for the second time. In doing so, Hat Day supporters have raised the profile of mental health in the community, aiming to reduce its stigma.

“Hat Day is a fun way for people of all ages to join together in raising awareness for mental health research and donate to finding preventions and cures for mental illnesses,” Mr. Davies said.

“We want to promote the fact that no matter what ‘hat’ people are wearing in their day to day lives, we are all affected by mental illness,” Terry Davies, Corporate In addition to this support, countless Manager says, “It is also a great way Rotary clubs, organisations to extend our community and community groups involvement by getting in Australia have hosted schools, workplaces and Hat Days during May and Mental illness individuals to host their own October. Close to $300,000 affects one in five Hat Day.” has been raised for mental Australians every health research since Australian Rotary Health’s year, contributing May 2011. inaugural Hat Day was held on 20th May, 2011 in to over 2,500 This year everyone is Martin Place, Sydney, raising encouraged to wear a hat on annual deaths awareness for mental health Friday 13th October, 2013 through suicide. by setting the Guinness and donate to Australian World Record for the Most Rotary Health in support of People Wearing Paper Hats finding treatments and cures Simultaneously. 301 people for mental illnesses. Many will also organise sported newspaper hats for ten minutes in their own Hat Day events at various times support of Australian Rotary Health’s cause. during Mental Health month; at school, in the workplace, with the community or with In 2012 Hat Day was celebrated in similar friends. Your group is encouraged to get style on the 18th May, 2012. Unfortunately involved too. their World Record had been broken by a school in Southampton, UK with 802 Studies funded by Australian Rotary people and Hat Day supporters just missed Health have included the discovery of out on reclaiming the title. Hat Day was a gene which may be the body’s self then moved to fit in with Mental Health defence against cancer, uncovering the link Month in October 2012, to be celebrated between diet and mental health, a number annually in future on the Friday of Mental of programs to reduce anxiety, depression Health Week. and suicide and the assessment of national bowel cancer screenings to be used in Given a second opportunity, on Friday the future government policy-making.

12th October at 1pm, 817 people wore red “We hope that even more individuals and organisations will be involved in Hat Day this year to stop Australians from keeping mental illness under their hats,” Ms Gillett says.

“The donations we receive and the mental health research it funds are fundamental in reaching positive outcomes for people suffering mental illnesses like Ian Parker did.”

For more information visit www.hatday.com.au, www.facebook.com/rotaryhatday or www.twitter.com/HatDay 3 Hat Day Guinness World Record Moment.

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Autumn 2013

Queensland Scientists Easing the Pain for Children with Cystic Fibrosis

Thanks to an anonymous donation of a $150,000 piece of equipment, researchers at Queensland Institute of Medical Research(QIMR) are developing a new way to monitor the health of children with cystic fibrosis.

The Australian-first liver study could ultimately eliminate the need for painful liver biopsies.

Professor Grant Ramm from QIMR’s Hepatic Fibrosis Laboratory and Dr Peter Lewindon from the Queensland Liver Transplant Service at the Royal Brisbane Children’s Hospital (RCH) are using a Fibroscan machine to measure the health of the child’s liver.

The machine uses ultrasound to locate the liver under the chest wall, and send a small vibration or pulse into the liver, measuring the rebounding pulse wave which determines the level of scarring on the liver.

Liver scarring is a crucial indicator of whether a child with cystic fibrosis will need a liver transplant, and biopsy is the current gold standard for assessing this.

The biopsies are taken under general

Cystic Fibrosis (CF) is the most common recessive genetic condition in Australian children. The lifethreatening condition clogs the body’s organs – including the pancreas, lungs and liver – with a thick, sticky mucus, causing breathing difficulties and long-term liver damage.

anaesthetic, but still leave the patient sore for several days.

Professor Ramm said the QIMR study would compare Fibroscan results in children.

“We’ll compare the scan results of healthy children, children with CF with healthy

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IMR Professor Grant Ramm with the Q donated Fibroscan

livers, and children with CF who have liver scarring. We also plan to compare these Fibroscan results against blood tests which may also prove useful in identifying children with CF who have liver scarring,” Professor Ramm said.

“This piece of equipment will help provide benchmarks for doctors, and ultimately eliminate or reduce the need for biopsies.”

Dr Lewindon said the Fibroscan could also be used regularly, while doctors tried to limit the number of biopsies.

“We can get a more accurate picture of the development of scarring, and to pick up the early signs which normal ultrasounds can’t detect. Combined with the benchmarks this study with QIMR hopes to provide, Fibroscan could become best practice,” Dr Lewindon said.

“For most patients, we’ll be able to reassure them about the future health of their liver. When the screening is indicating more scarring, we can at least prepare those 5 – 10 % of children whose scarring indicates they may need a transplant.”

The $150,000 Fibroscan machine was donated by a member of the public, and is the only paediatric equipment of its kind in Queensland.

The Queensland Institute of Medical Research is a world leading translational research institute. Our research focuses on cancer, infectious diseases, mental health and a range of complex chronic diseases. Working in close collaboration with clinicians and other research institutes, our aim is to improve health by developing new diagnostics, better treatments and prevention strategies.

For more information about QIMR, visit www.qimr.edu.au

Autumn 2013

Work’s the thing!

How philanthropy helped Orygen Youth Health (OYH) conduct research into vocational recovery for young people with a mental illness, and in turn got young people real jobs that helped them on the road to recovery.

Studies have shown that between 75% and 95% of people with schizophrenia are unemployed. Current interventions such as those provided by Job Network and Disability Employment Network have not been shown to improve the employment levels of people with schizophrenia.

When asked what the most important thing for them for the future, young people with psychosis will often say finishing their education or getting a job. The appalling unemployment statistics for young people with a mental illness coupled with their strong desire to work demonstrated a

“Our research has shown that young people who are offered the services of an employment consultant are much more likely to get a job and we know that having a job is associated with a range of great health and life outcomes.”

clear need to A/Prof Eoin Killackey and his team at Orygen Youth Health Research Centre (OYHRC) to undertake research that evaluates a vocational intervention for young people with first-episode psychosis that supports them through job placement and their first six months on the job.

Thanks to philanthropic funding being made available to the OYHRC the research was allowed to proceed and achieved ground breaking results.

The intervention primarily consists of having an employment consultant embedded in Orygen Youth Health’s Clinical Program (OYHCP). Having an employment consultant in the program stops the situation where a young person with mental illness my be shunted to different employment agencies where they have to retell their story over and over again.

Assisting with employment seeking begins immediately to facilitate enthusiasm and keep the client motivated (most agencies

have a four to eight week waiting period before job searching begins).

According to A/Prof Killackey, “Our research has shown that young people who are offered the services of an employment consultant are much more likely to get a job and we know that having a job is associated with a range of great health and life outcomes.”

“These young people are less likely to need government benefits, are more motivated to manage their illness, and more likely to make social as well as symptom recoveries. This is a win-win situation for everybody”.

The project has been an enormous success with 85% of young people participating in the research study achieving successful and sustainable employment.

According to Subway’s John Jukes, “Subway is very committed to helping young people, particularly those who have had a rough start. We are very pleased indeed to be part of OYH’s Vocational Recovery Program and urge other companies to help OYH clients out by giving these kids a job and hope for the future.”

OYHRC’s corporate partners are not only donating valuable funds to this project, they continue to “walk the walk” by offering job opportunities and work experience to OYHCP young people. This is truly active philanthropy for research that is immediately and directly changing young lives for the better. It seems that, for young people with a mental illness, such as psychosis, work actually works!

Youth mental health research centres in Europe and North America have drawn on the results of OYHRC’s research to begin their own studies in this area. Importantly, A/Prof Killackey’s team has brought this group together to produce an international consensus statement about the place and importance of vocational recovery programs in first episode psychosis.

This ground breaking research has indeed benefitted from the support of philanthropic funding and in-kind support from concerned corporate partners of OYH that have provided employment opportunities and work experience for OYH young people.

Initial funding was received from Australian Rotary Health. Last year the Daniel and Danielle Besen Foundation and MessageMedia Pty Ltd made significant donations to the project. Other significant contributors have been companies such as: Ernst & Young, Tricore Matrix, De Carolis Pty Ltd and Subway, as well as foundations such as the Newsboys Foundation and the Coca Cola Foundation.

( L to R) OYHCP’s Gina Chinnery with John Jukes, Subway store owner at one of John’s Subway stores where OYHCP young people are employed.

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Case Study Jason was a young man and a client of OYH Clinical Program. Jason had, suffered a first episode of psychosis, some problems with substance use and had been kicked out of home rendering him homeless. To cap it all off, when he came into the program he was due to face criminal charges in court. Despite all that, he really wanted to not only get a job, but get a qualification through doing an apprenticeship as a hairdresser. Using some of the philanthropic funds available through support of the research project, Gina Chinnery, the program Employment Consultant, was able to buy Jason appropriate clothes for going to hairdressers to seek employment as an apprentice. She also accompanied him to court where she explained to the Magistrate the program that Jason was entering, his desire to work and the implications for his vocational opportunities that a conviction would involve.

He received a good behaviour bond with no conviction. Shortly afterwards Jason found work as an apprentice. Again through the support provided to the program, Gina was able to purchase Jason the necessary tools and equipment to begin his apprenticeship. Through her work with Jason, Gina had discovered that he also had a learning disorder. This was going to make the coursework part of his apprenticeship difficult. Once more making use of the resources provided by supporters of the program, Gina was able to arrange for a tutor who would help Jason learn. Four years later, Jason completed his apprenticeship and is now a successfully qualified working hairdresser. Needless to say, were it not for the program, and for the resources provided through our generous supporters, Jason’s life may have been dramatically different.

Save the date Research Australia Annual Awards Night Wednesday 13 November 2013 at the Park Hyatt Hotel in Melbourne Our Awards night brings together the Who’s Who of health and medical research with government, corporates and consumer special interest groups to honour our Award recipients. It will be a night to catch up with old friends and colleagues, exchange stories and reflect on the machinations of the past year.

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Autumn 2013

New website has the facts for better hearing health Hearing loss will at some point affect most Australians – especially as we, or members of our family, grow old. In fact, one in four Australians are expected to have some kind of hearing loss by 2050.

So how can you get a better understanding website specialising in hearing health, hearing of hearing loss and how to manage it? The technology and hearing loss prevention. reality is that today most people turn to HEARnet (www.hearnet.org.au) is the internet to get a better understanding focused on providing impartial information most health issues; however the internet about hearing and hearing loss that the is awash with information and can be public, hearing healthcare and medical overwhelming. The challenge for any professionals, and researchers can readily discerning online knowledge-seeker is understand and use in their everyday lives. how to filter all the “HEARnet is really information out there for anyone interested to find the bits they “All of these publications can in protecting and want to know. be quickly found by accessing enhancing lifelong Fortunately the the HEARnet Library on the hearing,” says HEARing Cooperative homepage,” explained A/Prof.

HEARing CRC CEO Research Centre A/Prof. Bob Cowan.

Bob Cowan.”

(HEARing CRC) “It’s an helpful has done a lot of online resource for the heavy lifting for people who suspect they, or someone Australians concerned about their hearing they know, might have a hearing loss and health by creating the HEARing Education are searching for accurate and impartial and Research Network (HEARnet) – a new

explanations about the different ways it can be managed.”

HEARnet features some great resources including an interactive ear animation that explains different types of hearing loss as along with explanations on how the various hearing technologies available to manage them actually function.

There is also a hearing clinic finder page so people can quickly find a hearing health professional in their local area, as well as a series of podcasts (called HEARcast) that profile common issues and the latest developments in hearing health and research.

For healthcare professionals and researchers, the website provides more detailed resources to assist with their clinical and laboratory work such as guidelines, technical reports, fact sheets and research presentations.

“All of these publications can be quickly found by accessing the HEARnet Library on the homepage,” explained A/Prof.

Bob Cowan.

“We have also developed an online training centre called HEARnet Learning (www.hearnetlearning.org.au) as a new way for health professionals to expand their knowledge and skills, and understand new technologies.”

HEARnet, through the HEARing CRC, is financially supported by the Cooperative Research Centres Program – a Commonwealth Government Initiative.

HEARnet home page

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Autumn 2013

How are Australian women ageing?

Exactly how Australian women faring as they age? This question is at the heart of a major research program being undertaken by the National Ageing Research Institute.

The Women’s Healthy Ageing Project began in 1991 with a cohort of 438 Australian-born women aged between 45 and 55. Since then, researchers have been following the women as they have transitioned from perimenopause to late life.

According to Associate Professor Cassandra Szoeke, Director of the Women’s Healthy Ageing Project, the data to date has been invaluable in informing health over the menopause transition and now into later life.

“What is unique about this study is that it has extensive detailed measures, a high retention rate and midlife data,” she said.

“We are able to track and measure a range of factors, including physical, psychological and lifestyle factors which may affect later life.”

She says the prospective information on mood, alcohol, smoking, physical activity and social connectedness is proving to be highly informative in learning more about the development of illness in ageing.

“This study is not only long in duration but its advantage is in the detail of measures taken in each follow-up year with extensive biomarker, physical measures and questionnaire data,” she said.

“The commitment of the Australian women who are part of this study and have remained within the study for over 20 years is the reason for its success,” said Associate Professor Szoeke.

Through the project, the NARI researchers are beginning to be able to gain a better understanding of, for example, how women use formal health care services like attending menopause clinics, doctors and their use of hormonal or other therapies.

“We are also able to model ways in which psychological and biological factors are interacting in their effects on health and behaviour of women as they reach later life, as well as identify the characteristics of women who may be at an increased risk for specific health disorders,” said Associate Professor Szoeke.

The research findings will result in an education campaign about health in mid and later life for women in the community and health professionals.

The project has inspired a number of important contributions to medical research, as well as drawn accolades for researchers involved. Most recently Katherine Campbell

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and Katherine Burn were presented with awards at the 16th Australasian Menopause Society (AMS) Congress for their contribution to the project.

Katherine Campbell, a clinical psychologist with more than five years clinical experience, was awarded the Barbara Gross Award for best presentation at the Congress. Currently undertaken a PhD, her research is examining mid-life predictors of late life depression in women.

The focus of her research is to examine the factors which influence the development and maintenance of positive and negative mood and depressive symptoms in the women as they enter late life.

“What we are trying to do is to improve understanding of the development and pattern of mood and symptoms of depression and to identify factors that increase or lower an individual’s risk of depression,” she said.

Her hope is that this work will aid the early detection of depression in middle-aged and older women as well as identify potential protective factors seen in women with consistent positive mood scores.

As part of the research, Ms Campbell will travel to Japan, a country renown for its healthy ageing, on the Henry and Rachel

“We are able to track and measure a range of factors, including physical, psychological and lifestyle factors which may affect later life.”

Ackman Travelling Scholarship where she will compare measures of depression for post-menopausal women in Australian and Japanese cohorts to determine the factors involved in healthy ageing.

Ms Campbell has had a strong interest in depression and women’s health.

After completing her Honours Degree in Psychology at the University of Western Australia in 2005, she moved to Victoria where she worked at Ballarat Base Hospital as a Mental Health Clinician before beginning full time work as a psychologist in private practice in Geelong. During her

time in the practice she developed and presented a mental health training course for an employment agency as well as a stress management program designed for and delivered to adolescent teenage girls at a local private school.

Katherine Burn was awarded the Vivien Wallace Prize for best poster presentation at the AMS Congress. A psychology graduate who recently completed her honours year working with the project, Ms Burn investigated the role of grandparenting in post-menopausal women’s health over a two-year period.

The aim of Katherine’s study was to examine the effect of grandparenting on cognition in post-menopausal women.

Her study showed that the amount of time spent minding grandchildren was associated with memory and processing speed in post-menopausal women.

“In this group of women we found that this effect was not always beneficial; spending excessive amounts of time minding grandchildren was detrimental to cognition,” she said.

According to Ms Burn, spending up to one day per week minding grandchildren was ideal for cognitive function in the project sample.

Overall, however, her study demonstrated that minding grandchildren had a positive impact on memory and problem solving over a two year period.

Katherine completed her Bachelor of Science, majoring in Psychology, at the University of Melbourne in 2011. During her degree, Katherine developed a particular interest in clinical neuropsychology which she continues to pursue.

Through her position with the Women’s Healthy Ageing Project and through further study, she hopes to extend her honours research in post-menopausal women’s cognition. She particularly wants to investigate other care-giving roles in postmenopausal women and to examine how mood in caregivers interacts with cognition.

The Women’s Healthy Ageing Project is now in its 21st year and is currently recontacting participants to follow up on health in later life. For further information, you can follow this research online at http://www.nari.unimelb.edu.au/whap/

Autumn 2013

Lethal bug on Flinders hit-list A deadly bug which strikes the sick, injured and those undergoing invasive medical procedures will come under the microscope as part of a new Flinders University study.

Researchers Professor Melissa Brown and Dr Uwe Stroeher from the School of Biological Sciences have just received a $588,242 grant from the National Health and Medical Research Council to investigate the bacteria Acinetobacter baumannii – one of the six most dangerous resistant bugs in the world.

While Acinetobacter breakouts are uncommon, when the bug does strike it usually presents in hospitals – particularly intensive care units – through personto-person transmission or contact with contaminated surfaces.

The bacteria can cause a range of conditions including pneumonia, skin and wound infections, meningitis and blood and urinary tract infections, although it rarely affects healthy people outside of hospital settings.

Dr Stroeher said the study would investigate how the bug changes its

genetic structure to go from living in the environment to the human body.

“When an organism goes from a surface to being in the body it has to change its lifestyle so we want to find out how it conditions itself to survive in these different environments,” Dr Stroeher said.

“We’ll be looking at how the bacteria’s genes are turned on and off in a host versus in the environment, and comparing different strains of the bacteria to see what makes some strains more dangerous than others, at a genetic level,” he said.

Professor Brown, who is the chief investigator of the study, said as the organism was highly resistant to disinfectant and antibiotics, it was extremely difficult to treat.

“It could be spread, for example, by crosscontamination from a computer keyboard that has the bacteria to a patient which, in turn, could lead to an entire ward needing

to be disinfected,” Professor Brown, who heads Flinders Molecular Microbiology Group, said.

“But because it’s so resilient, disinfectant won’t eradicate it from the environment and if a patient gets sick there are only limited antibiotics that will treat it,” she said.

“The other particularly worrisome problem is that the bacteria can sit dormant for several weeks then reappear – if you put most bacteria on a surface they will be dead within a few days because they dry out but this bacteria can survive and be transferred even a month later.”

Although Acinetobacter breakouts were rare, Professor Brown said it was an underresearched area that could cause future problems due to the bug’s resilience.

“There’s not enough fundamental knowledge on these bacteria and with no new antibiotics on the horizon, treatment options are becoming limited,” she said.

Translational Funding Opportunities from the Wellcome Trust Wellcome Trust are a global charitable foundation dedicated to achieving extraordinary improvements in health by supporting the brightest minds. The Wellcome Trust devotes a significant proportion of funds to health related research conducted outside the UK through its international funding.

The Technology Transfer Division of the Wellcome Trust helps to bridge the gap between fundamental biomedical research and commercial application by funding applied research and development projects to a stage where they are attractive to a follow-on funder. Since its inception in 2002, the division has funded £400M of research projects which have leveraged a further £800M of follow-on investment.

The Wellcome Trust support a wide array of projects across a spectrum of technologies and therapeutic areas in both academic

and commercial institutions around the globe; the key criterion is that the project addresses an unmet medical need or is an enabling tool in healthcare research and development.

Drs. Bethan Hughes, Sarah Molton and Ann Mills-Duggan from the Wellcome Trust will be visiting Australia presenting on translational funding opportunities available to Australian applicants at a series of events.

In Sydney 25 March 3.30 – 6.00pm at Macquarie Group Foundation, 1 Shelley Street, Sydney www.researchaustralia.org

In Brisbane 26 March 7.00am for 7.15am start – LSQ Industry breakfast at McCullough Robertson Brisbane Office, Level 11 Central Plaza Two, 66 Eagle Street, Brisbane http://www.lsq.com.au/Events.aspx

In Melbourne 27 March 4.00 pm – 6.00 pm at Nexia Australia, Level 18, 530 Collins Street www.biomelbourne.org

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Autumn 2013

The world’s largest Cerebral Palsy study

Cerebral Palsy is the most common physical disability in childhood. It affects over 34,000 Australians with a child being diagnosed every 15 hours. It is more common than every type of childhood cancer combined and there is no cure. The economic burden to Australia is more than $4 billion annually and rising – yet relatively little progress has been made in its prevention and cure.

The Robinson Institute at the University of Adelaide has recently taken some remarkable steps toward prevention. They are focussing on the causes, particularly the genetic causes and have made a major breakthrough by undertaking the world’s largest landmark study. The success of this study is due to the 4,300 participants recruited and this could not have happened without the generous support of Macquarie Private Wealth and other donors.

Through a private boardroom dinner hosted by Macquarie Private Wealth an incredible $33,000 was raised for Cerebral Palsy research. This was directed toward the study and helped expand the Robinson Institute’s recruitment efforts. The Institute now holds the world’s largest collection of DNA from children with Cerebral Palsy and their mothers.

What is Cerebral Palsy?

Cerebral Palsy refers to a physical disability resulting from a brain injury. The brain injury occurs during pregnancy or in early life and is a lifelong condition.

Those with Cerebral Palsy have an inability to control movement or posture. The severity of the disability ranges from a slight limp to being unable to sit. Those children with more severe symptoms are strapped into a wheelchair and may be unable to talk, eat, drink or swallow.

In addition to the physical symptoms, children with Cerebral Palsy are more likely to have other conditions such as epilepsy, communication disorders or intellectual disabilities.

Despite its impact on affected individuals,

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their families and the wider community, Cerebral Palsy has received far less attention than other paediatric conditions such as cancer or infectious diseases.

The researchers also found that some events which occur during pregnancy increase the risk of Cerebral Palsy.

These include pre-term birth and growth restriction, i.e. twins sharing the womb.

The world’s largest study

It is important to recognise that whilst the combination of genes and infection does trigger some types of Cerebral Palsy, the causes are varied and complex, and further research is required.

Recognising the need for greater understanding and treatment, the Robinson Institute’s Cerebral Palsy Research group are the first to examine the causes of Cerebral Palsy through a combination of genes and the environment. Not only did they assemble the world’s largest collection of DNA from children with Cerebral Palsy and their mothers, they also received detailed questionnaires. These were completed by the mothers and provided details about their pregnancy and their child, as well as access to their medical notes taken during pregnancy and their child’s diagnosis.

Once the DNA samples were in the lab they were tested for a series of genes that were hypothesised to be involved in Cerebral Palsy development.

The researchers then looked at these genes along side information from the questionnaires and medical notes; with a particular interest in mothers who had an infection during pregnancy.

Ground breaking research The findings, which were uncovered as a result of this study, have had an enormous impact. They demonstrate that if a child or mother carry certain gene sequences they are more likely to develop Cerebral Palsy.

Furthermore, the risk of particular subtypes of Cerebral Palsy increases when the mother had an infection during pregnancy.

Where to next?

These new insights into Cerebral Palsy have significant implications. Using genetic markers, it may now be possible to identify children with an increased risk of developing Cerebral Palsy before they are born. Clinicians could then focus on reducing ‘trigger events’ that may occur during pregnancy.

While some genetic links have been found there is still much more to discover. The group examined just 39 of the DNA letters within each person’s genome of more than 3 billion.

Further recruitment required To continue the research and discover all causes of Cerebral Palsy, the Robinson Institute must recruit more Cerebral Palsy families.

If your child has Cerebral Palsy and you would like to participate in research please visit the website below for more information. adelaide.edu.au/cerebralpalsy For more information on the Robinson Institute and to support their life giving research visit robinsoninstitute.edu.au

Autumn 2013

Editor’s Corner

Who can put an article in Grass Roots?

Grass Roots is designed to showcase the activity in philanthropy for health and medical research, through either fund raising activity, awards, or the results of actual research funded by philanthropy. It is also a vehicle for the broader community to understand the importance of philanthropic funding and how they can contribute to the expansion and improvement in health and medical research in Australia.

When will I need to get my article in by if I want to be featured in the next edition?

The article submission deadline is May 30, 2013. Articles should be no more than 1000 words long and please provide one photo (with subtitles) and logo to accompany the article.

Please submit articles to; iris.hui@researchaustralia.com.

Sydney 2013 – Philanthropy Conference The next conference will be held in Sydney during August 2013 and Mary Woolley President and CEO of Research America will be our keynote speaker. We are currently developing the program based on the concept of “collaboration for better health”. And of course, we have a number of sponsorship opportunities, read more or contact Catherine Johnson on 02 9295 8518 for more information.

Research Australia does not warrant or guarantee the accuracy, quality, completeness, currency, or validity of any information on its website or newsletter. Some of the materials in classified ads, press releases, and newsletters are also provided by other organisations. Research Australia does not edit or control the financial information it receives. Due to the possibility of human and mechanical error, neither Research Australia nor any of the contributors to this newsletter are responsible for any errors or omissions. All information is provided “as is” without warranty of any kind. Neither Research Australia nor the contributors to this newsletter make any representations as to the accuracy or integrity of the information. They disclaim all express, implied, and statutory warranties of any kind, including warranties as to accuracy, timeliness, completeness, merchantability, or fitness for any particular purpose. Neither Research Australia nor its contributors will be liable for any damages of any kind incurred as a result of the information contained within this newsletter or on this site.

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