NeuRA CARERS. Why. the. magazine. need SUPPORT. page. Issue 17 Winter EMPATHY LOSS in dementia. How an ipad can PREVENT FALLS

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1 the NeuRA magazine Issue 17 Winter 26 Neuroscience Research Australia neura.edu.au 1 EMPATHY LOSS in dementia How an ipad can PREVENT FALLS 2 8 RARE MUTATIONS in bipolar disorder Why CARERS need SUPPORT page 3

2 Message from our EXECUTIVE DIRECTOR welcome After 19 years as a Director, and Chairman of the Board for 12, Paul Brassil is retiring. Paul s dedication to NeuRA has been truly remarkable and his achievements will remain in effect for a long time to come. We sincerely thank Paul for his wise counsel, his support for our research, and his generosity. I am delighted that John Grill, AO has accepted the position of Chairman. John is the former Chief Executive, and now Chairman of WorleyParsons, a major energy and resource services company. He has been a long-time supporter of brain research and, with this leadership transition, we go from strength to strength. John not only has a vision for what NeuRA can achieve, but also the experience and drive to ensure that we remain at the forefront of health and medical research. NEW TOOL PREDICTS WHETHER LOW BACK PAIN IS LIKELY TO BECOME CHRONIC Dr James McAuley and his team have developed a model to predict whether a person with acute back pain is likely to go on to develop chronic back pain (lasting longer than three months). The study, published in PLOS Medicine found that the new five-item prognostic model, called PICKUP, has better predictive accuracy for pain outcomes than either clinician judgement or commonly used screening tools. Constructing accurate prognostic models is an essential step towards improving patient outcomes, says lead researcher Dr James McAuley. The tool is designed to prevent unnecessary tests and alleviate burden from healthcare systems and is now available for practitioners and researchers to use. news IN BRIEF 04 WORKSHOP AIMS TO AVOID COGNITIVE BIASES Cover NeuRA is conducting research to better understand caregiver stress Prof Peter Schofield Dr James McAuley Empathy loss in dementia 04 Prof Simon Gandevia 05 Sedatives and sleep dementia 06 Dr Phu Hoang Prof Simon Gandevia and psychologist Annalese Bolton recently held a series of Clean Thinking workshops aimed at reminding NeuRA researchers and staff of the biases and errors in decision-making they face as scientists and in daily life. The 15 participants who attended the most recent course came from a range of disciplines within the institute. They learned to become aware of their continual thinking (ie cognitive ) biases, to identify vulnerable or red flag situations, to apply appropriate thinking strategies that match the situation, and then to evaluate their effectiveness. I am now more aware of biases and the decision-making process, said one attendee. I will definitely apply some of the strategies before making future decisions. The course will be held again later in the year to ensure that NeuRA provides novel resources to help it maintain high standards of scientific rigour. Indeed, his first act as incoming Chairman has been to announce the establishment of the NeuRA Discovery Fund, a major platform to support dementia and brain research. Over the next decade, the NeuRA Discovery Fund will allow us to address and solve the two primary issues faced by anyone with dementia - receiving a timely, accurate diagnosis and ensuring that the treatment is tailored to their specific needs. The fund will support the brightest minds in neuroscience research and, in turn, will benefit the nearly 400,000 Australians currently living with dementia The NeuRA Discovery Fund will provide fellowships to recruit senior researchers and their teams over a 5-year cycle. Gifts, grants and donations will be sourced to support this vita l fund. John also announced his own significant gift to launch the NeuRA Discovery Fund, taking his personal support of NeuRA to $5 million. We re very fortunate to be able to make full use of John s entrepreneurial gifts and have no doubt he ll inspire many people to get involved. Prof Peter R Schofield FAAHMS PhD DSc Executive Director and CEO EMPATHY LOSS IN DEMENTIA A neuroimaging study led by Dr Muireann Irish has uncovered why some people with dementia experience a reduction in empathy. Early loss of empathy is one of the core clinical features of behavioural-variant frontotemporal dementia (bvftd). In contrast, interpersonal skills remain relatively intact in Alzheimer s disease, despite marked cognitive decline. The study found that different parts of the brain are affected in bvftd as compared with Alzheimer s, which caused a marked decline in socioemotional skills, namely the ability to understand another person s emotional state or respond appropriately to another person s emotions. These results will lead to understanding how caregivers may better deal with these changes. SEDATIVES AND SLEEP APNOEA Prof Danny Eckert and his team have designed several studies to examine the effects of common sleeping pills on the upper airway muscles and breathing during sleep. One study has found that that a common sleeping pill does not reduce upper airway muscle activity in people with OSA as previously thought. This feature may help some patients. Sleeping pills decrease a person s ability to wake up when their airway narrows. This can help some patients with OSA (those who wake up too easily) to achieve breathing stability by allowing them to get into deeper sleep. However, for people who don t wake easily these same pills can prolong their breathing stoppages and worsen their oxygen levels. A future study will focus on the physiological differences that causes these diverse results. BALANCE IMPROVED IN MS A step-training video game designed for people with multiple sclerosis can improve not only balance but also thinking skills. The study by Dr Phu Hoang and colleagues has shown promising results with a stepping exercise directly targeting critical balance issues that contribute to a person s risk of falling. Dr Hoang said that this work is exciting because it now shows it is possible to modify key physical and cognitive risk factors for falls in people with MS. Researchers will soon roll out a large-scale clinical trial to examine the full potential of this innovative program to reduce falls risk. About NeuRA Subscribe Credits Neuroscience Research Australia (NeuRA) is a not-for-profit research institute based in Sydney, Australia. Our goal is to prevent, treat and cure diseases, disorders and injuries of the brain and nervous system through medical research. Find out more at neura.edu.au or call If you would like to subscribe to our magazine, go to neura.edu.au/subscribe/mag. You can also your details to magazine@neura.edu.au or call Editor: Chelsea Hunter Photography: Anne Graham Writers: Chelsea Hunter, Anne Graham Designer: Kristian Molloy

3 feature story THE CARER S experience HIV news A lack of drive and a decline in initiating tasks can have a great impact on a spouse. The road to receiving a diagnosis can also present an additional stress as a family seeks to understand some of the changes they see in their loved one. FTD is not a common form of dementia, so unless a clinician sees it all the time, it can be difficult to diagnose. People are often sent to Frontier to confirm a diagnosis of FTD. They may have already seen a number of specialists without a clear answer, and that can really add to the stress, says Cassandra. Compounding this, many people with FTD have limited insight into their symptoms, and may therefore be reluctant to seek any medical advice. A study from Prof Hodges group has found that psycho-education programs for caregivers, which focus on problem solving techniques and coping strategies for challenging behaviours, may reduce levels of burden experienced as the disease progresses. Understanding this enables professionals to give better advice and support for caregivers and families. Knowing what to look for encourages carers to work on preventing and alleviating stress whenever possible. AND AGEING AN ANTIRETROVIRAL TREATMENT HAS HAD UNEXPECTED BENEFITS FOR HIV+ PATIENTS. HIV and brain ageing research, led by Prof Lucette Cysique, concentrates on the causes of HIV-related brain injury in persons who are successfully treated with antiretroviral drugs and have reached at least 45 years of age. As part of the study the participants underwent a scan using a method called Diffusion Tensor Imaging (DTI). This method is designed to measure the brain s white matter integrity. The white matter is composed of bundles of myelinated axons, which connects brain regions. HIV is known to alter white matter via inflammation, which then disrupts the connections between brain regions, especially between the deeper part of the brain and the frontal lobes. Ageing brain processes can also disrupt the same circuits. Therefore it is possible that ageing HIV+ persons may be at greater risks of white matter abnormalities. A recent study by the group, however, revealed a more complex picture. In the sample that were successfully treated, the group detected evidence of brain repair marked by better white matter integrity as a function of historical immune recovery. It is well known that dementia causes distress, however, little research has been done to understand caregiver stress and how it differs within the dementias. Prof John Hodges and the Frontier team are investigating caregiver distress among people looking after those with dementia and combining it with information from patients to better understand which aspects of the condition are creating more distress for their families. The experience of burden varies across dementia syndromes. Higher levels of burden are reported in caregivers of patients with frontotemporal dementia (FTD) a younger-onset dementia characterised by changes in personality and behaviour than in Alzheimer s disease, the most common type of dementia. As I saw more and more patients with FTD it became apparent that their families are under tremendous levels of burden and stress. It s an important area of research because frontotemporal dementia is a group of disorders that have a terrible impact not just on the patient but the family as well, Prof Hodges said. As I saw more and more patients with FTD it became apparent that their families are under tremendous levels of burden and stress, Prof Hodges explains. Upon diagnosis, a person is often still working, has teenage children and living parents so it affects many individuals across the generations. The levels of burden, stress and depression in the family are very high. We clearly need to understand which aspects of the disorder have the greatest impact. Occupational therapist Cassandra Kaizik, who is part of Frontier, works closely with the family carers of patients who are involved in NeuRA s research, assessing the day-to-day impact of frontotemporal dementia on both patient and carer. We collect information from the carer on how the person with dementia is managing in day-to-day life and their behaviour, but also on the carer themselves and how they re coping with what s happening, she explains. The team use questionnaires that gauge carers stress or depression and how this may change over time. In addition to the younger age of diagnosis, there are a number of reasons that carers of people with FTD have a greater burden, said Cassandra. They might present with behaviour change or a change in personality, there may also be disinhibition or apathy. Having family support and external support makes a big difference for people, says Cassandra. We have run the 14 week psycho-education intervention group here on three occasions, with really positive results. In addition to providing the carer with skills to cope, it provides people a chance to meet with others in the same situation. Most group members continue to maintain contact and support each other beyond the 14 weeks. There are also FTD-specific groups that are run by carers. Hearing shared experiences of looking after someone with FTD and swapping coping techniques and brainstorming how to manage difficulties has proven to be extremely beneficial. Prof Hodges concurs that once a diagnosis has been made, carers should identify potential areas of support in order to manage their stress. Discuss the diagnosis with friends and family because support networks are essential. Family members should also gather as much information as possible from the many excellent website and YouTube videos about FTD to help them understand what is going on and what may be coming up. The group are continuing to examine the impact FTD has on carers and families. Current studies include examining carer burden in children with an affected parent, changes in the spousal relationship when a partner has FTD, and the carer s experience when their loved one moves into residential care. This aspect of Frontier s research aims to inform suitable interventions and better support for families affected by FTD. The Frontier group will hold their annual FTD Information Day for Families and on June 10th here at NeuRA. In other words, the HIV+ persons who had the greatest recovery in their immune functions once they started antiretroviral treatment also had the strongest level of white matter integrity. This effect probably erased any combined HIV and age effect so much that there was no major white matter integrity difference between the HIV+ and age-comparable HIV-negative controls. The group found that HIV disease duration and cardio-vascular diseases, rather than age, were associated with lower level of white matter integrity. It will be important to follow up this cohort as they reached their 60s and 70s. David Foxe runs through an assessment with a patient Support networks are essential for managing stress Antiretroviral drugs have an impact on white brain matter 04

4 SCH I ZOPH R EN I A PREVENTION MOVES A step CLOSER Schizophrenia Research BETTER UNDERSTANDING of BRAINS Risk markers for schizophrenia have been identified in a large epidemiological study of children aged nine years and older, leading to the potential to help at-risk kids earlier, before illness develops. Several new neurobiological markers have been identified that may reveal early signs a person has an increased risk of developing schizophrenia or a related disorder, a new study reveals. Dr Kristin Laurens leads the London Child and Health Development Study (CHADS), which follows the development of children aged 9 to 11 years who show risk markers for schizophrenia. Her recent review summarised the CHADS findings, which supports the current view that social, psychological, biological, and cognitive issues can influence the development of schizophrenia. The Schizophrenia Research Laboratory team, under the guidance of Prof Cyndi Shannon Weickert, have made significant inroads to understanding what happens in the brains of people with schizophrenia. The study provides evidence that several structural and functional brain abnormalities associated with schizophrenia are evident in at-risk children by age 9 to 12 years. It also identified several cognitive biases associated with children who experience psychotic-like experiences, as well as the likely negative life events that may have contributed to developing them. Additionally, children who were considered at-risk were typically more stressed by these events than their healthy peers. We ve had a wealth of information coming from the Schizophrenia Research Laboratory. Three studies in particular have helped us to understand the alterations that occur in the brains of people with schizophrenia and shed light on well as potential new therapies. A study by Katie Allen, published in the Australian and New Zealand Journal of Psychiatry, found that reduced hippocampal cell proliferation might be present in schizophrenia. The hippocampus plays a critical role in learning and memory and is often affected in people with schizophrenia. The study concluded that restoring the ability of the hippocampus to create and grow new neurons may offer a new therapeutic target for hippocampal dysfunction in schizophrenia. Dr Duncan Sinclair has returned to NeuRA after three years in the US to continue his work in mental health research. Dr Duncan Sinclair is preparing to use neuronal cells taken from the nasal passage to better understand the molecular disturbances involved in disorders such as schizophrenia. He hopes that, one day, we can use techniques such as this to provide more effective treatment options. There are currently very few methods that can be applied in a clinic to reveal what is happening in a person s brain, says Duncan. What he would like to develop is a way for clinicians to understand the cause of a disorder and prescribe a treatment designed to specifically address the problem. How we treat people doesn t seem to be informed by the brain abnormalities those people possess, he says, partly because we have no way of identifying the neurobiological underpinnings of illness in specific individuals. I d like for clinicians to have some way to diagnose, for example, that a person has NMDA receptor hypofunction originating in pyramidal neurons and that they re likely to respond to an agent that modulates synaptic glutamate. What he is describing is targeted individualised treatments. Duncan believes we may be a long way from achieving that, but that his work now could lead us there. It began seven years ago when he first started working in Prof Cyndi Shannon Weickert s lab as a PhD student studying the molecular stress response pathways in the brain. After four years at NeuRA, Duncan moved to the US to continue his postdoctoral research. During this time he began to use nasal cells (also call olfactory neuroepithelial cells) and electroencephalography (EEG) to better understand the molecular pathways involved in depression and Fragile Syndrome X, a genetic disorder that causes intellectual disability. Now, he is investigating whether these same measures could be used to assess treatment responsiveness in people with schizophrenia. Neural cells found in the nose, and techniques like EEG, have the potential to shed light on brain abnormalities, he says. Ultimately I d like to see these used in a clinical setting. Dr Duncan Sinclair Dr Kristin Laurens Prof Cyndi Shannon Weickert These findings have established that a group of markers that contribute to the development of schizophrenia can be identified in at-risk children. The benefit of this work is that, by identifying the type of difficulties these children experience before they develop significant illness, we can offer more benign treatments that target these difficulties and help prevent them becoming more significant, says Dr Laurens. Those treatments may include psychological interventions to help them better deal with psychotic-like symptoms or techniques to improve coping and resilience if they experience adverse life events. Many children and adolescents who experience poor mental health do not receive the care they need. Knowing the early signs of risk for schizophrenia or a similar disorder will help us to develop interventions that are designed to delay the development of schizophrenia, or prevent it all together. Oestrogen has been implicated in the development and course of schizophrenia with most evidence suggesting it has a protective effect on the brain. Treatment with raloxifene, a selective oestrogen receptor modulator, can reduce symptom severity, improve cognition and normalise brain activity during learning in schizophrenia. A study by Ellen Ji explored whether or not raloxifene could also modulate the underlying neural activity of emotion processing, which is linked to social functioning outcomes. It is the first to find that adjunctive raloxifene treatment may restore neural activity. There is potential for raloxifene to be used, perhaps in conjunction with behavioural training, to improve social functioning in people with schizophrenia. A third study, by Lara Glass, further supports the theory that there are immune abnormalities in people with schizophrenia. Immunoglobulins (IgG) are antibodies found in the blood. They are of particular interest because a different disorder that presents with psychotic-like symptoms (NMDAR antibody synaptopathy) is produced by IgG autoantibodies and, importantly, is treatable. Contrary to expectations, the team found that all people had IgG in their brains. IgG exits the brain through interacting with a transport receptor (FcRn). They also found that the brain increases its ability to get rid of IgG when in an inflamed state. This indicates that inflammation is instrumental in how the brain handles IgG. It also implies that differences in these IgG-brain interactions may drive schizophrenia, and not just the presence or absence of IgG in the brain

5 YOUNG RESEARCHERS For now, though, the journey is in its early stages. We re very much at the beginning, Alex agrees. The cancer field has just started to create treatments targeted to particular genes, but we re not there yet in mental illness research. Even knowing which genes are involved is difficult and its only since I started my post-doc five years ago that the psychiatric genetics field has started to pin down a small number of genes that appear to be involved in bipolar. 5 minutes with DR KIM DELBAERE Dr Kim Delbaere and her research team have created a home-based training program that can be loaded onto an ipad to help improve the balance of those over the age of 70 to reduce their risk of falls. WHAT MADE YOU THINK OF CREATING AN APP FOR THE STANDING TALL PROGRAM? We need older people to do balance exercises for two hours per week, if we want to prevent falls. Many people prefer to do exercises in their own home at their own time, instead of attending group exercise classes. However, the challenge there is that it is difficult to offer an individualised, progressive and varied program without a trainer. So we thought, how can we make things more interesting while having the right type of exercises that will engage people for a long time? We asked people how they would like to do the exercises and got the sense that the ipad is the way to go. The Standing Tall app has more than 2000 exercises and it remains fully tailored to the individual as their balance improves. WHAT HAS THE RESPONSE BEEN SO FAR? We have over 250 people in our study so far, about 150 people have used the app for six months and 50 people for 12 months. So far, the feedback from the participants has been very encouraging. Some people have told us: I can feel my balance is improved in everything I do, Standing Tall has motivated me to exercise more regularly, I am more confident about not falling and This is the first program that makes me set aside time because I know these exercises are good for me. Overall, our participants enjoy exercising with our app, because they notice just how much the program is helping them. WHAT DOES A ROUND OF EXERCISE LOOK LIKE? The premise is that a person has to do two hours per week, and every week starts fresh. They can choose their session length so 10 minutes twice a day or do 40 minutes in one go. Depending on the time a person chooses, the session will be slightly different, but basically they do balance exercises. ARE THERE MATERIALS OTHER THAN THE APP? The exercise equipment includes a foam mat to create a wobbly surface, a step-up box and a stepping mat. Together, these materials provide a huge variety of exercises. The exercises get people to step in patterns, sometimes including stepping on the box, and there is a metronome so people can practice stepping to a beat. The exercises include challenging standing balance, walking and stepping; there is a great deal of variety. We have videos and voice-over instructions to guide people through each exercise. DO YOU HAVE TO BE CONFIDENT WITH TECHNOLOGY TO USE THE APP? We have a huge number of people who have never had an ipad or aren t very computer literate; however, the large majority (if not all) of our participants feel very confident using the app. The app was developed in consultation with a focus group of older people. Trini Valenzuela (PhD student) and Ashley Woodbury (Research Assistant) were instrumental in this process. Together with engineers Thomas Davies and Jonathan Yeong, they were able to incorporate the many recommendations and suggestions that we received from our focus groups and have made the app a piece of (evidence-based) art. HOW WILL YOU KNOW IF THE APP HAS BEEN SUCCESSFUL? On a scientific level, we want to prevent falls. That s our primary aim. We know that over one third of people over the age of 70 fall once a year or more. We also know that we can prevent falls in older people if they do the right balance exercises for two hours a week, for a minimum of six months, but preferably longer. Previous research following these recommendations has shown reductions in the number of falls of up to 40 percent, and that s what we hope to see. On the other hand, we are also noticing how our Standing Tall app improves people s quality of life, which is a measure of success in itself. The study still requires Sydney-based participants over the age of 70. To register your interest or ask questions about participating, give them a call on their general information number The Standing Tall team will get back to you within 5 working days. Dr Kim Delbaere Dr Alex Shaw How the mandibular splint works The genes involved in bipolar disorder Research Officer Dr Alex Shaw joined NeuRA after completing a PhD in cancer research. He is investigating the genetic underpinnings of bipolar disorder. There is no single cause of bipolar disorder, but understanding how factors such as brain structure and genetics contribute to its development will help researchers to know how to best diagnose, treat and, hopefully, prevent the disorder. Best treatment strategies Mandibular splints are a popular device to treat obstructive sleep apnoea, but not everyone responds well to them. A new study aims to understand who is most likely to benefit from this treatment. Dr Lauriane Jugé is a post-doctoral research officer dedicated to the development of imaging biomarkers to improve the understanding and diagnosis of various disorders such as obstructive sleep apnoea (OSA), a common respiratory disorder characterised by events of collapsed upper airway during sleep that can result in daytime sleepiness, mood changes and cardiovascular diseases. Its treatment varies from person to person as the underlying causes differ between patients. The most effective treatment is the continuous positive airway pressure (CPAP) but is poorly tolerated by patients, 25 percent of whom discontinue treatment within the first year. Mandibular advancement splints (mouthguard devices worn during sleep to hold the mandible forward to enlarge the airway) are better tolerated by patients, however they are only effective for approximately two-thirds of OSA patients. It is currently not possible to predict who will respond to this treatment. Lauriane s primary research focus is to develop magnetic resonance (MR) imaging biomarkers to characterise the different types of OSA that may help to develop alternative treatment strategies, and predict mandibular advancement splint treatment outcomes. Although these genes contain DNA changes that are significantly associated with the disorder, having these changes only increases your risk of developing bipolar by a miniscule amount, and this information is far from clinically useful. So, yes, we re at the beginning. Recent advances in technology have enabled sequencing at the level of the entire genome to become a reality. Alex has been working in Dr Jan Fullerton s group, along with colleague Dr Claudio Toma, using sequencing data to investigate the genetic factors that contribute to bipolar disorder. We know that the heritability of bipolar is very high, so that is the reason why so much effort is focussed on the genetics of bipolar. Specifically, they re looking for rare mutations, for instance those that those that are present in only a handful of individuals and not otherwise seen in the general population. The team has collected and verified many rare mutations from fifteen families who were surveyed and will soon publish the results, focusing on which genes these rare mutations were found in and how this compares with other studies investigating the genetics of bipolar disorder. To achieve these goals, Lauriane is investigating with her colleagues how the tongue moves during quiet breathing and when the mandible advances using a tagged MR imaging technique. Tongue movement is a promising biomarker for two reasons. First, it has been observed that tongue movement in OSA patients during breathing differs from healthy volunteers and, even more interestingly, it also differs among OSA patients. Could it be that tongue movement is a way to distinguish different types of OSA? Second, it has also been observed that the airway was not always enlarged when the mandible advanced, partly due to an anteriorposterior stretching of the tongue. Could it be that tongue movement during mandible advancement helps us predict splint treatment outcomes? Lauriane and her colleagues are currently running two large studies to answer to these questions

6 Making a difference Honouring A LOVED ONE WILL YOU HELP Discover, Conquer and Cure? DONATION & RESEARCH VOLUNTEER FORM Asking friends and family to make a gift to NeuRA in memory of a loved one is a meaningful way to honour a person s life and interests. In 2008, Michelle was devastated when her father, Jack, passed away from Multiple System Atrophy (MSA), aged 83. Then, only two years later, Michelle was similarly diagnosed with this fatal neurodegenerative disease. At the time, she and her father were the only recorded parent-child occurrence of MSA. Michelle was the eldest of three children, says Michelle s adoring husband, Edgar. She idolised her parents. Before her diagnosis, she was a vivacious and successful sales executive whose passions included skiing, swimming, her golden retriever and travel. She had glamourous movie-star looks and her vibrant personality meant she was always noticed and rarely forgotten. She had a great sense of humour and she continued to share a special bond with her stepgrandchildren, even after her ability to speak was taken. Stories of heartbreak, such as George Kostakis, happen all too often, but there is a way you can help. Diseases and injuries of the brain and nervous system rob us of those we love. They are painful, cruel, and can cut short vibrant lives such as George Kostakis. He d take Jordan down to the beach as a toddler and he loved the attention that would bring, calling his grandson his chick magnet, recalls Laila, George s daughter. Always up for a laugh, George loved football, great food and his precious family, but when he didn t show up to his grandson s football training or matches, his family knew something wasn t right. He didn t want the kids to think he was drunk, so he just stopped coming, says Laila. P A party for JEANNE Bes Sadly, Michelle passed away in 25. \ Asking friends and family to make donations in lieu of gifts for a birthday, anniversary or other event is a wonderful way to celebrate and acknowledge a cause close to your heart. Step 1: How I choose to give my gift: card Jeanne Little, Australian icon and darling of Australian television for over 30 years, is living with Alzheimer s disease. Maria Venuti, a close friend of Jeanne, celebrated her 75th birthday recently and as part of her celebrations she chose to support the Jeanne Little Alzheimer s Research Fund at NeuRA. It is so difficult seeing my vibrant, beautiful friend, with a heart of pure gold not being able to recognise me when I visit, Maria says. Every time I see her I pray that I might see a sparkle, a glimpse of my dear bosom buddy. We have shared so many memories and to know that this horrible disease has stolen these memories away from her, breaks my heart. George had started falling over. Soon, he was in a wheelchair and had lost much of his ability to speak and swallow. He had bowel and urinary issues and was fainting. George was diagnosed with Multiple System Atrophy, a cruel degenerative brain disorder related to Parkinson s disease that impairs and eventually destroys the body s functions. Patients are confined to bed within five years and death results within nine. Step 2: My gift: $50 $100 $250 or Visa Mastercard American Express Diners I feel blessed to have this major celebration of my 75th birthday, surrounded by my family and friends and so it just felt right to mark this occasion with a huge party that would also raise funds for The Jeanne Little Alzheimer s Research Fund at NeuRA. NEURA EVENTS IN 26! There is no cure, effective treatment or government funding for research. You can help. When you give a gift to NeuRA, you re helping someone with Parkinson s disease or dementia. You re helping a child with autism, an adult with sleep apnoea or preventing falls in the elderly. You may even be helping someone you love. Prior to her passing, she and Edgar had decided that asking loved ones to make a donation to MSA research at NeuRA in her memory was really important. Michelle strongly supported research. While she was still able to, we travelled the world meeting with leading scientists and clinicians. When the time came, we chose to support NeuRA. They had received the first NHMRC-funded research grant into MSA in Australia and they continue to collaborate with MSA researchers around the world trying to find what causes MSA. Knowing that important research is happening right here in Australia gives me hope for others in the future, even if it is now too late for Michelle. 4 June Australia s Biggest Charity Horse Race Day* 14 June City2South Brisbane 4 & 6 July Gold Coast Marathon 24 July Run Melbourne* 9 August City2Surf Sydney* 6 September Canberra Fun Run 20 September Blackmore s Running Festival Sydney Step 3: How to make a donation Mail this coupon in the reply paid envelope Call us on to make a donation over the phone Make a secure online donation at neura.edu.au/donate Fax this form () October Tough Mudder Sydney* 19 November Tough Mudder Melbourne* November NeuRA Trek Cradle to Cure (Tasmania)* *NeuRA is an official charity or call Stephanie Grove on s.grove@neura.edu.au or and support NeuRA. A message from the NeuRA Foundation: The NeuRA Foundation may co-operate with other like-minded reputable Australian charities to promote our work to our respective donors. If you d prefer that NeuRA does not share your information with other charities, please phone us on , us at foundation@neura.edu.au or write to us using the enclosed envelope. Michelle Baltins Maria Venuti and Jeanne Little George Kostakis and grandson 04 George before his diagnosis 04 Thank you for generously supporting our research into diseases of the brain and nervous system Neuroscience Research Australia Foundation, PO Box 1165, Randwick NSW 21 ABN

7 in focus ART Expressing dementia Aboriginal artist Mary Jane Page was approached by NeuRA to create a painting that reflects the experienced of dementia. When I sat in quiet time I thought, dementia is about the brain and it dies; the actual cells die. So I portrayed that in an artistic way, with heaps of feeling going into it. I m sure by looking at it you will see the feeling that went into this piece depicting a brain with dementia. In the middle of the brain is a black spot, which is the first sign of dementia and it spreads like a vortex through the other brain cells. The rest of the black around the brain is the other cells dying and the silver represents the minimum of brain tissue that is left. The red shapes represent the blood flow, the blood cells, and the veins. There are slight greens in there, which to me is calming. Also in the centre of the brain is the Eye of the Mind. We are all born with the Eye of the Mind and we will die with the Eye of the Mind. It s part of our existence; the eye will always be there, even in sickness. The tracks in the top right and lower left hand corners symbolise the memory leaving the brain. The black in the background is the death of the brain tissues, everything s gone, and that s where it goes to when it dies. It symbolises loneliness and how the person feels with dementia. We don t know where it goes to and that is what we are hoping to find out. The flowers represent hope; that one day there will be a cure for dementia. The red in the flowers is strength and power because we must have the strength and the power to have hope. The gold also means strength and it signifies the sun, hoping that the sunlight comes in, and that there will be a brighter day for those people suffering from dementia. This is my interpretation of dementia and I m sure once people take a long look at it they will see what the artwork means. Mary Jane Page Click on the icons on our website to view. Neuroscience Research Australia, Margarete Ainsworth Building, Barker Street, Randwick NSW 21 Phone: info@neura.edu.au Website: neura.edu.au To make a donation in support of our research, call or go to neura.edu.au/donate