2015 Summer Brainwaves Newsletter

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brainWAVES The Newsletter of the Brain Foundation

Summer 2015-2016

2015 Research Gift Edition The years seem to roll around quickly and once again we are delighted to send you our Research Gift Recipient edition. We are immensely proud of the winners and all our supporters should be assured that the quality of research in Australia is second to none. The only disappointment for the Brain Foundation is that we cannot fund more of the applications we receive. It was pleasing to hear that the Federal Government is starting to make a commitment to funding for research in Dementia. Currently it is just under 5% of all priority funds allocated by the National Health and Medical Research Council (NHMRC) annually. This urgently needs to increase because the incidence of neuro-degenerative diseases amongst the community is rising rapidly.

2015 Award Winners pictured with Brain Foundation Directors, Guest of Honour Dame Marie Bashir AD CVO, centre front, and Professor Jim Lance AO CBE, founding Director of the Brain Foundation at the inaugural meeting in 1970, to her left.

We thank all our supporters for your continuing contributions. Without you, these wonderful research projects would not be possible. We wish you all the very best for Christmas and the holiday season.

2015 Headache Week Success This week was an outstanding success for our chronic headache and migraine sufferers. Members of our Headache Register were invited to come along to seminars on Migraine Management by top Headache and Migraine specialists. Seminars were held in Sydney, Brisbane and Melbourne and due to their overwhelming success and the interest shown by Register members in Adelaide and Perth, we are planning to hold them again in 2016 in all 5 cities. Dates will be advised.

talk to our members. Thanks also to Allergan for their support of these events. We were also thrilled with the number of visitors we received at our stands in Sydney QVB and Melbourne Federation Square. Chatting with people and creating awareness for headache sufferers is important so that you realise you are not alone. If you are not a member of the Headache Register, or you know someone who would benefit, visit our website: headacheaustralia.org.au

Our sincere thanks go to Dr Bronwyn Jenkins, Associate Professor David Williams and Dr Nicole Limberg for donating their time to

Headache Awareness Week gets a lot of support from pharmacies around the country and if you would like to support this very important event, please contact our office for the 2016 dates and to go on a list for a support pack.





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1300 886130 6600 1300 886 660 886 660 headacheaustralia.org.au headahea cheau dacstralia heaust.org.au ralia.o rg.au Headache Australia is a division of the Headache Australia Brain Foundation www.hydralyte.com is a divisionHeadac of thehe www.hydralyte.com Austral www.hydra Brain Foundation is a division ia lyte.com of the Brain Founda tion

Contact the Brain Foundation PO Box 579, Crows Nest NSW 1585 Telephone: 02 9437 5967 or 1300 886 660 Fax: 02 9437 5978 Email: info@brainfoundation.org.au Visit our websites brainfoundation.org.au and headacheaustralia.org.au

Dystonia News DYSTONIA: Muscles Behaving Badly Dystonia is the third most common movement disorder worldwide. The cause, while neurological in origin, is not known For further information about Dystonia please email Lee Pagan at ADSG@live.com.au

September is Dystonia Awareness Month The Dystonia Support Group has once again put in a large effort during September to spread awareness of Dystonia and its many variations and to help increase donations to the Brain Foundation for research into this very debilitating condition. If you would like to know more about Dystonia, then please go to: https://australiandystoniasupportgroup.wordpress.com/blog/ or https://www.facebook.com/AustralianDystoniaSupportGroup/ If you would like to donate to research into Dystonia then please do so via the donation page on the Brain Foundation web site: www.brainfoundation.org.au/supportus and then choose Dystonia from the drop down box.

Australian Story and Jenny Morris Once in a while we hear about someone we all know, who is suffering from something we know nothing about. This was the case in October when singer Jenny Morris was featured on Australian Story on the ABC. Jenny suffers from Spasmodic Dysphonia, which is Laryngeal Dystonia – affecting the muscles of the larynx or voice box. As a result, Jenny is no longer able to do the one thing she loves: sing. But, if one good thing can come, it is that the story has taken the condition to the public. The Brain Foundation received many calls after the story asking for further information. Dystonia can be very cruel. There are so many different ways it can affect you and change your life. Check it out on our web site under Disorders or go to the Dystonia sites as listed above to find out more.

Sue Williams (pictured left) with her display and Margot Chiverton (right) at a local market in Adelaide. Both Dystonia sufferers, Sue and Margot work tirelessly to spread information about Dystonia to the public and answer questions. They provide current information on the various forms of Dystonia and help to raise valuable funds for Dystonia research.

Dystonia Awareness If you would like to visit the site please go to: http://australiandystoniasupportgroup.wordpress.com

Aneurysms Have you been affected by an ANEURYSM? If you or your family has suffered from this potentially devastating condition and would like to join a support group of people who know what it is like to go through, then look up Brain Aneurysm Support Australia on Facebook.


My Story, by Louisa Reid – Brain Foundation supporter ‘Do not take life too seriously. You will never get out of it alive.’ * Elbert Hubbard In July 2013, I went for a CT scan for what I believed was an earache. What they found was two aneurysms in my brain. This threw me into what was to become the ‘fight of my life’. The first one, operated on 9 months later, was 8mm. The second one was 5mm and did not need the same operation, I was told. I did lots of research to understand what was going on in my brain. And, I joined a group on Facebook called Brain Aneurysm Support Australia. On April 22, 2014, I went into my surgery expecting it would go well. I would stay in the ward for a few days

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and then I’d come home. In the ICU I couldn’t really hear or understand when the ward staff spoke to my daughter about how I was doing. After one week, I was placed in a wheelchair and taken to the BIRU (Brain Injury Rehabilitation Unit) – into a locked ward with staff, laid on my bed and my belongings unpacked from my suitcase. I couldn’t understand what was happening. It seemed serious and I had no information: I cried and I waited. The next day, I packed myself and went to the locked door to wait. No-one wanted to let me out. I stood in the hallway by the door. I went to the gym to wait by the other door. I sat with my belongings for quite a long time. When someone finally opened the door, they did not expect someone

to be leaving. I had made it out! I was stopped in the hall outside the locked door. I cried. I refused to move back. I refused to allow any staff to lead me back into the locked area. My doctor rang my daughter who arrived to talk with me. She then explained to me what was happening, why I was there. I didn’t want to stay on, but I had no choice. As it happened, when I had my operation I had also suffered a stroke. A brain injury, at my surgery, and I had been taken to BIRU for support and rehabilitation. I couldn’t see any truth, but I had to turn back with the staff. My daughter walked with me back inside and kept me company in my room. Continues on page 3...

Join the National Headache Register

gister members receive regular ates of current information as ve it. Don’t miss out, join now! headacheaustralia.org.au

Headache Australia One Pain we could live without FACT SHEET

Understanding Migraine Co-Reviewed by Dr Sally Rosengren and A/Prof Mirian Welgampola


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Funding Research Increasing Awareness

Headache week continues to generate great interest in the general public. At Headache Australia we believe that there are many people ‘who suffer in silence’. The number of sufferers of chronic headache and migraine in Australia are at this time unknown, but it is estimated that 20% to 25% of the population is affected. It is known that 25% of women will suffer with migraine, the most debilitating of headaches, over their lifetime. It is very important to be diagnosed by a professional, so as to have the correct information and treatment options.

A recent article in The Journal of Headache and Pain has provided updated information on worldwide disability in general – and Headache/Migraine IS a disability. With the last figures from 1990, it is welcoming to have more recent figures from 2013. However, it is not good news for Migraine sufferers. The sixth most disabling disorder worldwide in 1990, Migraine was 6th again in 2013, behind lower back pain and depressive disorders. However, the more insidious Medication Overuse Headache moved from 27th in 1990 to 18th in 2013. When these two, migraine and medication overuse headache, are combined, they become the 3rd most disabling disorder, worldwide. I am sure this will not come as a surprise to our headache suffers.

Would you like to try Cefaly for your headaches? Look this up and see if you think this treatment may be of interest for you. Working more on migraines and headaches to the front of the head, we at Headache Australia report that a high percentage of people who use Cefaly, have some up to almost 100% relief. Cefaly is available for purchase from the Brain Foundation or, if you would prefer, you can have a loan machine for a 4 to 6 week period. Please ring the Brain Foundation office to go on the list but be aware there will probably be a waiting time.

Are you a Headache Register Member? Our Register Members receive regular email updates for Research Projects, new medical information and other relevant information that comes our way. All donations made by Register members go only to Headache research. Also, being on the Register means that you receive BrainWaves twice a year as Headache Australia is a division of Brain Foundation, so you are kept up to date with our Research projects and fundraising too! Your email address is required. headacheaustralia.org.au Disclaimer: Headache Australia is not a medical office and cannot offer medical advice. We stress the importance of discussing any issues you have with your medical practitioner.

The staff who were supposed to support me would often not be available as they were so busy helping others. There were far too many BIRU patients with serious ABI / TBI’s, but I never included myself with them. I was frustrated in my inability to move forward. I couldn’t talk properly, I would repeat my own words and I realised that I wasn’t replying in English! I couldn’t communicate on my laptop – because I couldn’t remember, and also because it didn’t work from the BIRU. I was drawn into different training at the BIRU. I had a Speech Pathologist, a music therapist, a physio, and OT instructor, an instructor to walk me. I was positive! I began to talk as if I could continue to understand and believe, even though I so often had to stop and think. From the second weekend I was allowed to go home on the Friday afternoon and taken back to BIRU on Sunday afternoon. I didn’t – couldn’t – talk much and on one weekend I stayed with my daughter,

on another I stayed with my dog sitter, but the rest of the time I was on my own as my daughter had to go away due to another family illness. When my daughter arrived home a meeting of all of ‘my’ staff was held to discuss my progress. I had been told I had a ‘day-end’ of June 6, which I had accepted. The Social Worker then changed this to June 18, which I did not accept. I continued to work toward the earlier date. My daughter came to collect me on the Friday morning – right before she had to leave for an interstate funeral. I did not feel relieved at all to be home, but it was necessary. My friends who were at my home minding my dogs, were also leaving the next day. I was on my own. For anyone who has had a brain aneurysm, with or without stroke, or anyone who lives with someone who has, there is a need to understand how this changes their lives. Some stats I have found are that 3% to 5%

of strokes are caused by ruptured aneurysms. There are no stats for someone like me – an unruptured aneurysm but leading to a stroke in surgery. BASA on Facebook is a wonderful group for ‘aneurysm’ people and for so many other people who would like more information about aneurysms. I have been taken on as an admin for the site and I am enjoying it all. I have made, for myself, one thing to do each day – post some information. It is information that probably many people would not know and it is safe for me and my ‘language problems’. I now also work two mornings a week as a volunteer at an art gallery. I know now that the result of the aneurysm and stroke is just part of my life. I have depression which I try very hard to pull myself up from. For me, this is the result of living alone with few visitors and friends. Just before I had my CT, which found the aneurysms, I had passed a Graduation Diploma of Occupational Health Safety, which

complemented my job of 7 years. Now I know I can’t work in WHS because my brain won’t remember everything I really should know. I feel very upset that I can’t work anywhere. I have applied for jobs since my surgery, but most of them I never hear back from. Others who write have said I didn’t get their job. It is hard to make myself feel good because I keep thinking of what happened to me is unreal compared to the cancer which took the life of my daughters mother in law. Yet, when the depression lifts, I can think ahead. I have gotten to know ABIOS, Aphasia, STEP’S, Stroke Foundation and now Synapse and Brain Foundation. I feel that there are some very difficult lives from aneurysms and strokes, just like the other difficult lives that personal stories talk about. I am determined to make as many people as possible aware of what a brain aneurysm and/ or stroke can do to them, their partner or friend.

Summer 2015-2016


Fabulous Fundraisers Zombies Attack Australia …. Braaaainssss everywhere Brisbane .. Sydney .. Perth .. Canberra .. Cairns .. Townsville While they may seem unusual to ‘us normal people’, Zombie Walks have become important for raising awareness for the Foundation and are showing increasing value on the fundraising side. Perth led the way in our "Zombie" Season with the second Zombie Walk in that City. The participants showed the same dedication with their costumes and make up as the more experienced zombies in the eastern states. We were very lucky to have the Lord Mayor of Perth , Lucy Scaffidi, pictured with Gerald, to address the crowd and be the official starter for the Walk.

Brisbane, Australia’s original breeding ground for the undead! Sunday the 1st of November was the 10th Anniversary of the "Brisbane Zombie Walk". The Walk has now grown into a major event and since the world record of 20,000 participants was achieved in 2011, a number of alternative venues were tried because the 2011 event caused major traffic disruption, even on a Sunday afternoon. We hope that this year the great success of the event at The Roma Street Parklands, with an estimated 15,000 participants and spectators, will see the Parklands continue as the

'home ground'. The structure is based upon having top line entertainment on the stage that allows all the equipment needed by bands and there is a good route for the walk outside.

in touch with the Melbourne Zombies, so we should see some friendly rivalry between northerners and southerners next year.

Gerald is pictured with some of the regulars and with Anthony Radaza who has very capably led the Committee from inception into this major event. Brisbane was the first in Australia and became the model and inspiration for the others. Although we are sorry to lose Anthony from the Brisbane Hoard, he is moving to Melbourne and has already been

Team Eat Brains does it again! Sincere thanks go to Charmaine, Scott, Kimbly and the whole family for their ongoing fundraising for Brain Foundation. Here are the crew (with Fiona) ‘putting their feet up’ at the Sydney Zombie Walk. Sydney has a new committee and wrangled a very large, gruesome looking crowd to Hyde Park before walking down Macquarie Street to the Botanic Gardens.

Zombie photos with thanks to Mike Trikilis Street Photography

Ernst and Young Beanies for Brain Cancer A very big thank you to the Finance Team from Ernst and Young who held a fundraising afternoon tea for Brain Tumour research. Gerald from our office attended and gave a short talk on the work we do and the importance of research, especially for Brain Tumours which seem to be on the increase. While the afternoon tea was held in the Sydney office, we received donations from the Finance Departments around the country. Thank you very much for the generous amount donated.

The team from Ernst & Young, Sydney


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Fabulous Fundraisers Ray White Dazzles Again

Everyday Hero, Hero

20 years Fundraising for Muscular Dystrophy

Special mention must go to Emma-Leigh who has been raising awareness of Trigeminal Neuralgia through this site.

Andrew and Greg Bell from Ray White Surfers Paradise have supported this very worthy cause for the last 20 years. A glittering ball, held each year on the Gold Coast in September, raised a great deal for support and research into Muscular Dystrophy. To donate to the Andrew and Greg Bell Muscular Dystrophy Trust for research, please see the Brain Foundation web site. All donations are Tax Deductible.

Gerald Edmunds, with Valerie Gibson, Director Brain Foundation, Margie Van Egdon and Andrew Gibson at the 20th MD Ball.

Trigeminal Neuralgia is a very painful condition of the large, facial nerve which sends sudden, excruciatingly painful electric or stabbing pains through one side of the face. More common in women, it is extremely rare. It can be triggered by everyday things such as brushing your teeth or entering air conditioning or a breeze and attacks can last from seconds to minutes. Needless to say it is very debilitating for sufferers. Little is known about the causes and more research will help to unlock the causes of this terrible condition. Thank you Emma-Leigh for your efforts.

Abbey Dynasty Campdraft Carnival – September 2015 Once in a generation someone very special comes along! In the Australian Campdrafting community, this is the case with Theo Hill & Abbey. Abbey is the horse who was to go on to become the greatest sire of Australian Stock Horses and Theo was Abbeys handler and a horseman of great renown. Sadly, Theo passed away in 2014 suffering with Alzheimer’s disease. To honour Theo, Abbey and Abbeys breeder and owner, Harry Ball (dec’d), the Abbey Dynasty Campdraft Carnival was conceived and took place in Narrabri, NSW in September this year. The Brain Foundation was honoured to be a recipient of the funds raised on this very special occasion. Open only to horses whose direct lineage goes back to Abbey, there were over 600 entries over the weekend of events.

Jane Shaw, Harry Ball’s granddaughter, Fiona, Brain Foundation and Mariah Williams and her horse ‘Mr Smart’, ridden by Jane in a dressage demonstration on the day.

It was a very successful and special event honouring three of Campdrafting’s greatest participants. A big thank you to the organisers of this unique event and to all the riders who came long distances to participate. Special thanks must go to the following: to the carriers of the livestock who discounted their costs: to the suppliers of the cattle required for the weekend: the Narrabri Volunteer Rescue Association for their last minute call up: Narrabri businesses and community groups whose assistance was greatly appreciated over the weekend and all donors who made this event such a success and to Barbara Lee who supplied the photos. Ross Clarke on “Can Do” at the Abbey Dynasty Carnival

So, just what is Campdrafting? Campdrafting is unique to Australia. It has its origins with the pioneering stockmen of the outback. Mustering thousands of head of cattle in the vast outback, it often became necessary to ‘cut out’ a beast from the herd, or camp, for branding or other reasons. To do this, you needed to be a handy rider with a smart horse. After selecting the beast required, it was important that it was not able to return to the herd before you had done what was necessary, so a great deal of skill was needed to separate it and keep it apart. As you can imagine, this necessary part of droving soon turned competitive, with stockmen devising a 'course' and pitting their skills against each other. The sport developed with informal competitions on cattle stations and the first formal campdrafting competition occurred at the 1885 Tenterfield Show.

Summer 2015-2016


2015 Research Gift Awards The Summer edition of Brainwaves is our showcase for the Research Gift Programme, which is what we all work so hard towards each year, and the reason that you, our supporters, donate. Australia has many outstanding researchers across all medical fields worthy of our funding. It is a shame that they cannot all be supported and we hope that they persevere to get their wonderful novel ideas off the ground. It is only with “thinking outside the box� that new treatments and possible cures will be found. We wish more people could share in the enthusiasm that these researchers have for their projects. It is a pleasure to present the outstanding projects for 2015, as selected by our panel of eminent practitioners.

Developing a neuroprotective agent against neuro trauma Chief Investigator: Associate Professor Corinna Van Den Heuvel Co-Investigator: Professor Roberto Cappai, Miss Stephanie Plummer University of Adelaide Traumatic brain injury (TBI) causes more deaths in Australians under 45 years of age than any other cause, with survivors often left with serious neurologic deficits. The World Health Organisation (WHO) estimates that TBI will surpass many diseases as the leading cause of death and disability by 2020. Despite several candidate therapeutic compounds having been identified in preclinical TBI studies, to date, there are no effective pharmacological treatments for clinical TBI, which makes the development of a therapeutic for TBI an important and urgent goal. The amyloid precursor protein (APP) is a brain protein that has recently emerged as having a direct protective role following TBI. APP is highly expressed in injured neurons following TBI in humans and experimental models. Over the last 9 years we have published a number of papers to show a direct link between decreased APP levels and the exacerbation of TBI. Importantly, our most recent published experimental studies have convincingly demonstrated that APP has a protective role following TBI and that the increase


in APP expression following TBI is actually part of a repair response. Furthermore, administration of APP following injury significantly improves neurological outcome and neuronal survival. This makes APP a very strong candidate for development as a neuroprotective molecule against TBI and has been the focus of our studies over the past 10 years. Recently, with our collaborators from the University of Melbourne, who are experts in APP biology, we have identified the small specific region within this protein that is responsible for this protective activity (APP96-110). The intravenous administration of APP96-110 provides significant protection in experimental TBI against injury (as measured by motor and cognitive activity, as well as cell death). With this grant from the Brain Foundation we aim to enhance the structure and function of APP96-110 to further improve its protective activity in order to make it a better therapeutic molecule for the treatment of TBI.

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Vitamin D in Neuroinflammatory Disorders Chief Investigator: Dr Susanna Park Co-Investigators: Professor Bruce Taylor, Professor Rebecca Mason, Professor Con Yiannikas, Dr Vasant Hirani, Associate Professor Robert Henderson Brain & Mind Institute, University of Sydney Multiple sclerosis (MS) is an autoimmune neuroinflammatory disorder of the central nervous system, characterized by significant disability. Chronic inflammatory demyelinating polyneuropathy (CIDP) is a related autoimmune neuroinflammatory disorder which affects the peripheral nervous system – leading to progressive difficulties with walking and sensation. Both conditions are costly in terms of healthcare costs and burden on patients. However, we still do not fully understand the risk factors underlying the development of these disorders and need to develop better markers of disease activity to direct appropriate treatment. Vitamin D is important in modulating the immune system. Reduced vitamin D levels are associated with autoimmune conditions such as MS and type I diabetes. Sunlight and the distance from the equator (latitude) are important in determining vitamin D levels as sun exposure is required to produce vitamin D. Accordingly, the prevalence of autoimmune disorders is also associated with latitude. In Australia, MS is seven times more common in Tasmania (higher latitude) than in Queensland (lower latitude). Importantly, in patients with MS, vitamin D levels are also associated with disease activity and disability. However these factors have never been investigated in CIDP. This project will examine the rates of CIDP at different latitudes in Australia to determine if prevalence is associated with latitude. In order to determine if vitamin D levels are associated with disability in CIDP, we will measure vitamin D levels in CIDP patients and compare with functional ability. We have developed a comprehensive series of tests to examine function in patients with CIDP, including novel tests of nerve function. We will also compare with a group of MS patients to determine the differences in vitamin D levels across the spectrum. The overall aim is to develop a marker of disease activity and to examine the potential for a trial of vitamin D supplementation.

MR-based 4D flow in Idiopathic Chief Investigator: Dr Hugh Winters Co-Investigator: Professor Stuart Grieve Sydney Translational Imaging Laboratory, University of Sydney Idiopathic intracranial hypertension or pseudotumor cerebri (PTC) are names for a condition responsible for chronic headache and insidious vision

loss. It affects primarily women of reproductive age but can also occur in anyone. The most important modifiable risk factor is obesity and as such is becoming increasingly more common, particularly in Australia. The symptoms of PTC are caused by high pressure of the fluid that surrounds the brain. Current therapies are aimed at addressing this either with medication or

Pre-clinical assessment of arginine-rich peptides as a treatment to reduce brain damage following traumatic brain injury (TBI) Chief Investigator: Associate Professor Bruno Meloni Co-Investigators: Professor Neville Knuckey, Ms Li Shan Chiu, Dr Jane Cross, Mr Vince Clark University of Western Australia Brain injury or neurotrauma associated with TBI is a major cause of mortality and morbidity, especially in young adults worldwide. Neuroprotective treatments to reduce brain damage associated with TBI are currently lacking, which makes developing

Use of resected epilepsy surgery tissue to identify genetic causes of cortical malformations Chief Investigator: A/Prof Richard Leventer Co-investigators: A/Prof. Paul Lockhart, Dr Simon Harvey, Dr Wirginia Maixner Royal Children’s Hospital, Victoria Epilepsy is a common neurological disorder, which usually begins in childhood. Seizures can be well-

effective treatments of paramount importance. Any treatment that minimises brain injury associated with TBI is likely to improve patient outcome, and in doing so, reduce both its social and financial burden globally. While some of the brain damage associated with TBI occurs immediately as a consequence of the direct physical forces on the brain, a significant proportion of brain damage occurs several hours after the initial insult, and thus provides the opportunity for treatment interventions to minimise the extent of injury. controlled using medications in approximately 70% of patients, leaving 30% in need of better treatments. When the epilepsy is severe and affecting a child’s development, surgery sometimes offers hope for seizure control or cure when medications are not effective. Surgery is only an option when the child has a focal brain area from which the seizures arise. Cortical malformations are areas of the brain that did not form normally during the pregnancy. The most common focal cortical malformation is called “cortical dysplasia” in which the nerve cells (neurons) are disorganized and abnormally large neurons may be present. Cortical dysplasia a strong trigger for seizures. It usually occurs in very small regions over the surface of the brain and in its most severe form

To this end, our research group has recently demonstrated that arginine-rich peptides have potent neuroprotective properties and can reduce brain damage in animal stroke models. This is an important finding, as the damaging processes that occur in the brain following stroke closely resemble those that occur in TBI. Hence, the aim of the project is to determine if selected peptides are able to reduce brain damage and improve outcomes in an animal model of TBI. If successful, this project will allow us to identify the most appropriate peptides may involve an entire half of a child’s brain. Cortical dysplasia is responsible for ~5% of focal epilepsies, ~ 20% of infantile epilepsies and ~50% of childhood epilepsies requiring surgery. The causes of cortical dysplasia remain unclear, although recent evidence suggests a genetic basis. Contrary to most genetic disorders, cortical dysplasia may be due to genetic changes present in a small percentage of cells in the affected brain area rather than due to mutations throughout the body. This is known as somatic mosaicism. The aim of this project is to perform genetic studies directly on the brain tissue removed at epilepsy surgery. This tissue will come from patients being operated on at the Royal Children’s Hospital in Melbourne and will be studied

for assessment in a future clinical trial, our ultimate goal being to develop a new treatment to minimise brain injury and improve patient outcomes after TBI.

in the laboratories of the Murdoch Childrens Research Institute. It is hoped that by understanding the causes of cortical dysplasia better, we will be able to provide more accurate genetic counseling and offer new genetic tests to affected families eventually leading to improved, precision-based medical and surgical treatments. agents for the treatment of stroke.

Intracranial Hypertension surgery. In recent years the role of the veins surrounding the brain have come into focus. The high pressure of the fluid will compress these veins as the disease becomes more severe. Using a minimally invasive operation to place a stent to mitigate this compression subsequently results in a cure for most patients. This is a treatment option for patients with moderate to severe disease.

Patient must first be proven to have veins which are being significantly compressed. Currently, this can only be done with an invasive diagnostic procedure. We are currently refining existing cutting edge MRI technology that will enable us to scan patients without the need to have the invasive procedure. This will increase the access of patients to stenting and determine who is suitable without

ever performing a procedure. This MRI technology can also define blood flow in such high resolution and provide accurate information about blood as it passes through the brain. Currently it is not known why the disease occurs but we are confident this technology will shed some light on the disease.

Summer 2015-2016


2015 Research Gift Awards Novel combination therapy for brain tumours Chief Investigator: Dr Lenka Munoz Co-Investigator: Professor Terrance Johns University of Sydney In Australia, brain cancer is the leading cause of cancerassociated death for adults under the age of 40 and children under the age of 10, with one person dying every eight hours. The most common brain tumour is glioblastoma. The standard of care

A mouse model of mild maternal iodine deficiency and its effect on brain structure Chief Investigator: Dr Matthew Kirkcaldie Co-Investigators: Professor John Burgess, Professor James Vickers, Dr Anna King, Dr Kristen Hynes University of Tasmania Tasmania has a long history of health concerns about iodine nutrition. Our soil is low in iodine, for which the native Tasmanians compensated by eating seaweeds and shellfish, but European settlers

Improving Walking Disorders in Parkinson’s Patients using Cueing 8

for glioblastoma patients (surgery, radiation and chemotherapy) is the only therapeutic option, and one that is never curative. For patients receiving this treatment the 5-year survival rate is less than 5%, with the vast majority succumbing to the disease within two years. Thus, the need for new therapeutic strategies is urgent. We are developing a promising new strategy involving degradation of the protein called EGFR. 60% of glioblastoma patients will present over-expression of EGFR, which drives the aggressive tumour growth. Drugs that turn EGFR off are approved for other cancers, but have failed in glioblastoma trials thus far. Recent evidence suggests that to treat brain tumours, it is necessary not only growing food on Tasmanian soil experienced health problems such as goitre, and children with cretinism – permanent deficits in cognition and sensory processing – caused by a severe lack of iodine during brain development. Since the 1960s widespread supplementation has almost eliminated cretinism, which previously affected millions of people in iodine poor regions worldwide, and the problem is regarded as solved. Tasmania added iodine to salt and bread, and the iodine based disinfectants used by dairies added extra to the naturally high levels in milk. However these disinfectants were phased out in the 1990s, and for a few years before supplementation of bread became mandatory, it was possible for Tasmanians eating a healthy diet to have only barely sufficient iodine. Pregnancy increases the need Chief Investigator: Dr Wesley Thevathasan Co-Investigators: Dr Thushara Perera, Professor Hugh McDermott, Dr Jennifer McGinley, Miss Joy Tan, Mr Shivanthan Yohanandan Royal Melbourne Hospital Freezing of gait is a debilitating symptom of Parkinson’s disease

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to turn EGFR off, but also to remove the protein itself. A novel and unique way to do this is by turning off another protein called DYRK1A using DYRK1A-targeting drugs. In preliminary work for this project we demonstrated that the combination of DYRK1Aand EGFR-targeting drugs kills glioblastoma cells while sparing healthy cells. With the funding received from the Brain Foundation we will now be able to generate significant evidence necessary to progress this new treatment option to clinical trials. The outcomes of this first ever evaluation of a novel drug combination will have profound implications for glioblastoma for iodine, and what was barely sufficient becomes inadequate. Two of our team decided to see if this caused ongoing problems, and so the children of a cohort of mildly iodine deficient Tasmanian mothers have participated in ongoing studies since then. Testing at the ages of 9 and 13 has shown that their language abilities are consistently lower, by as much as 10% on some tests. This has obvious implications because mild gestational iodine deficiency is relatively common, even in areas where the non-pregnant population has enough, and there is little awareness and no routine testing. We think neurofilaments, structural proteins found in fast nerve fibres, may be affected. Thyroid hormone, which depends on iodine, controls the production of neurofilaments, and they are essential for fast signalling needed

associated with a heightened falls risk, which is a prevalent cause for morbidity and mortality. Individuals describe it as the feeling that their feet are glued to the ground leaving them frozen and unable to move when trying to walk. These freezing episodes can last from a few seconds to several minutes. Freezing is usually associated with reduced walking (gait) speed and step length. It occurs during

patients. This project will open up the possibility of improving survival of glioblastoma patients using DYRK1A-targeting drugs that have already been identified and are now in clinical development. As a result, translation of the preclinical evidence generated by this project could be achieved in the near future.

to process sound and language. Our project will impose mild iodine deficiency on pregnant mice, testing their offspring for levels of neurofilament production, the structure of fast fibres in the brain, and fine sensory discrimination. If we find a mechanism for the deficits, we can use it to raise public awareness of the need for good iodine nutrition during pregnancy, and to test potential interventions. Ensuring that expectant mothers have enough iodine may eliminate a hidden blight which prevents children from achieving their potential at school, and in life. gait initiation, turning or when encountering obstacles. An estimated 10 million people worldwide are living with Parkinson’s disease, and the prevalence of gait freezing is up to 60% of this population. It is an incapacitating motor symptom, as it significantly affects patients’ quality of life and levels of activity. Total loss of movement can also

Mechanisms mediating the therapeutic effects of N-Acetylcysteine in neurodegenerative disease

Chief Investigator: Dr Thibault Renoir Co-Investigator: Professor Anthony Hannan Florey Institute of Neuroscience & Mental Health, University of Melbourne Huntington's disease (HD) is a fatal disorder involving psychiatric symptoms, dementia and uncontrollable movements. The disease is caused by a ‘genetic

stutter’ in a single stretch of repeated DNA. One extraordinary aspect of this disease is that HD sufferers often only have a handful of extra glutamines in their huntingtin protein, in a protein made up of over 3,000 amino acids, amongst tens of thousands of different proteins encoded by the human genome. Thus, in such inherited disorders, it is an extremely fine line between health and a devastating disease that eventually kills the patients. At present, there is no treatment available which directly slows or stops the disease progression. Therefore, research facilitating the

development of new treatments is desperately needed. Over the past decade, our laboratory has characterized a mouse model of HD which has had the gene mutation inserted into the genome. We have been able to show that cognitive and affective changes precede the movement disorder. The current project follows up our recent discovery that a drug called N-acetylcysteine (NAC) has therapeutic effects in this animal model of HD (Wright et al., 2015, Translational Psychiatry). We will investigate how this drug works in the brain, and test a better, more efficient version of

the drug. In order to do this we will be using behavioural testing, combined with studies of specific cell populations and molecules, to work out how the drug exerts its beneficial effects. The success of this project could rapidly lead to clinical trials for HD, in Australia and internationally. HD is a fatal disease which is currently incurable, so any new treatment would have enormous impacts on HD families across Australia and around the world. Furthermore, HD has many aspects in common with motor neuron disease, Parkinson’s disease, Alzheimer’s disease and other forms of dementia.

Micro-RNA expression profiling in patients with cerebral vasospasm after aneurysmal subarachnoid haemorrhage Chief Investigator: Mr Alex Adamides Co-Investigators: Dr Stanley Stylli, Professor Andrew Kaye, Associate Professor James Ziogas, Dr Rachel Koldej Royal Melbourne Hospital Neuroscience Foundation Subarachnoid haemorrhage from a ruptured brain aneurysm is a major cause of mortality and morbidity. Cerebral vasospasm often complicates subarachnoid haemorrhage and can lead to stroke or death. The precise mechanisms contributing to the development of vasospasm are not well understood but it is thought that blood breakdown products induce a cascade of events including inflammation, leave patients wheelchair-bound. Furthermore, psychological conditions such as depression and anxiety are common in patients with freezing. Gait freezing is a progressive condition, and at its onset is usually treatable with oral medications. As the disease worsens, more invasive therapies such as deep brain stimulation (DBS) are required. However, DBS

the release of free radicals and vasosactive substances that result in sustained cerebral vasoconstriction, cerebral ischaemia and ultimately brain infarction. Vasospasm most often occurs 7-10 days after the onset of haemorrhage. It is currently not possible to accurately predict which patients will go on to develop vasospasm and prophylactic treatments are often ineffective. Micro-RNAs (miRNAs) are small, non-coding, single stranded RNA molecules involved in the regulation of gene expression at a post-transcriptional level. MiRNA’s have been shown to be involved in the regulation of multiple cellular processes including differentiation, proliferation, and does not improve freezing in many patients and therefore a novel intervention is required to treat this disabling symptom. Recent studies which utilised auditory, visual or vibratory cues to unfreeze patients have shown promise. In our study we propose a feedback system consisting of instrumented shoe-insoles that can detect and unfreeze gait freezing using either vibration, visual or auditory

apoptosis in both health and disease. Circulating miRNAs, packaged in microvesicles, have been detected in human serum and cerebrospinal fluid (CSF). We aim to collect daily CSF and serum samples from patients with subarachnoid haemorrhage and to analyse them for the presence of up to 800 different miRNAs. We will then compare the miRNA patterns of patients with and without vasospasm aiming to identify miRNA ‘signatures’ that may accurately predict which patients will go on to develop vasospasm. A secondary aim is to identify targets for gene therapy. It is now possible, for example, to silence or “switch-off” disease causing genes using a technique called RNA interference. We

believe that vasospasm is ideally suited for gene therapy due to the 7-10 day window before its occurrence. Our vision is that patients with subarachnoid haemorrhage will have CSF or serum taken on presentation for miRNA analysis which will allow clinicians to stratify patients into low or high risk for developing vasospasm. High risk patients may then be offered gene therapy aiming to modulate the expression of genes whose products are implicated in causing vasospasm, thereby preventing its occurrence.

cueing. So far we have designed, manufacturered and validated the insoles in a clinical study. We now plan to compare auditory, visual and vibratory cues to determine which one provides greatest efficacy. This knowledge will then be incorporated into our instrumented insoles to provide adaptive cues during walking to ensure patients do not freeze.

Summer 2015-2016


2015 Progress Reports Do memory concerns in healthy older adults herald future dementia risk? Chief Investigator: Dr Rachel Buckley Co-Investigators: Professor David Ames, Associate Professor Robert Hester University of Melbourne Alzheimer’s disease is the third leading cause of death in Australia, and currently has no cure. Every day, many Australians are diagnosed with early symptoms of dementia, but not every individual who attends a memory

Identifying new treatment targets for stroke Chief Investigator: Associate Professor Shaun Sandow Co-investigators: Dr Rohan Grimley, Dr Andrew Dettrick, Dr Tim Murphy, Dr Nicole Jones, Ms Corinna Burgin-Maunder, Dr Fraser Russell University of the Sunshine Coast Dystonia is a disabling For the brain to stay healthy, the blood vessels in the brain need to supply it with oxygen and nutrients and remove waste products. In stroke, the blood vessels of the brain

clinic with a concern will progress to this diagnosis. Concerns of forgetfulness are very common in the normal population, and many of these concerns do not signal the starting point of a dementia. Discerning the difference between “concerning” concerns and normal forgetfulness is quite complex. As the population ages, it is clear that not everyone can be sent to a memory clinic for detailed neuropsychological and psychiatric assessments. Some intervening step needs to be realised that will improve the diagnostic reliability of subjective concerns. The aim of this project is to address this issue by applying a novel technique to measure an individuals’ metacognitive efficiency, or how well individuals gauge their own memory function. This pioneering technique uses a sophisticated algorithm was developed by one of my project

team-mates at the University College London, and was recently published in Science.

either become blocked or burst, which results in a lack of nutrient supply and waste removal, and thus damage to the brain tissue. In the case of damage caused by blocked blood vessels, reestablishing the flow of blood to the brain is one way to improve the detrimental outcomes.

chemicals that dilate or constrict blood vessels is altered, disease results.

In healthy blood vessels, specific types of cells release chemicals that both increase (dilate) and decrease (constrict) the inside space of the artery, and in turn control blood flow. The release of these chemicals occurs at the same time and in a balanced manner and depends on the presence of specific chemical release sites (channels) on each of the two main cell types in the blood vessels. When the balance between the activity of the

My team and I will calculate metacognitive efficiency levels in healthy older adults over the age of 60 to see how well these levels inform subjective concerns about forgetfulness. We predict that individuals who have high metacognitive efficiency will have a very good ability to monitor changes in their memory function. If these people are worried, then we predict that they will be clearly worried about memory changes, and will be more likely to show biological risk for Alzheimer’s disease. We would then recommend for these individuals to be followed up with comprehensive neuropsychological assessment in a memory clinic.

study is to reduce the burden on our healthcare system which is likely to occur as our population ages. Results arising from this project will aid general practitioners in their decisionmaking regarding the referral of a concerned, but putatively healthy, older adult to a memory clinic. We also anticipate this will be a valuable diagnostic tool to provide a more efficient process for identifying those who will truly benefit from early intervention and prevention strategies for AD.

Our broad-scope goal for this

In animal models of acute (ischemic) stroke where blood flow is blocked, we have found that the innermost cells that line the blood vessel have a channel present that does normally occur in such cells. Our initial studies from humans confirm this observation. Further, our early functional studies from the animal model of stroke also confirm that the change in the location of this channel results in a change of blood flow. Thus, the aim of our work is to determine the distribution and function of specific channels that control blood flow in normal blood vessel and brain function, and how these may be changed

in stroke. The longer term aim of our work is to specifically control the activity of the channel that is not normally present in the blood vessel lining, and thereby increase blood flow in the damaged brain. Overall, our work aims to identify new methods to improve blood flow after brain injury.

Take part in real-time research on migraine iManage Migraine, a recently launched app by Headache Australia and MSD, is helping thousands identify their migraine triggers and manage their migraines better with their doctor. But did you know that you can also take part in surveys? Each month, data is collected on 2 aspects of migraine and results published from the previous month. Did you know, for example, that 60% of migraine sufferers experience migraine at least weekly? Or that half experience vomiting? To take part in the research, download the app by searching ‘imanage migraine’ at the Apple or Google Stores.


The Newsletter of the Brain Foundation

94698 MSD iManage Migraine Card Booklet.indd 1

4/09/2015 9:45 am

Exercise your brain Are you using your most important asset? We all know that muscles benefit from regular use – use it or lose it, as they say. The brain may not be a muscle, but, it too benefits from regular use and grows stronger the more you use it. So try our very popular Sudoku puzzles to keep your brain in tip top shape. Our thanks to Brain Food Factory for the puzzles. Why not subscribe to free online puzzles www.brainfoodfactory.com to get your monthly fix!




Solutions on back page

The Sir Charles Bright Trust - 2015 This Trust supports students who are disadvantaged by illness or injury with additional funding so that they can continue their studies. This year, Brain Foundation sponsored Stephen Chan from Somalia. Stephen suffered a brain injury in a car accident. He is currently undertaking a Masters Degree in International Relations at Adelaide University. We wish him all the best with his studies.

…. and an enterprising young man? Callum Smith and his family have had a shock this year with the discovery of his sisters’ brain tumour.

Photo: Stephen Chan pictured with Rosemary Penn, CEO Sir Charles Bright Trust and Gerald Edmunds, from Brain Foundation.

All our Fun Runners

Tamworth fair Now in its 11th year, the Tamworth Fair was on again this November. Thanks go to the Committee who put in so much hard work every year to support Australian research. Their efforts have supported many grants over the years and most recently the 2015 Major Grant as described in our Winter newsletter.

Would you like to support Brain Tumour research…

Our thanks go to all the intrepid runners around the country who raise funds for us via on-line sites. Your contributions are gratefully received and help us to continue our Research programme. Let me know you are running for one of our brainy caps to show your support!

Successfully removed, it has been a long road to recovery and Callum would like very much to raise awareness and funds for Brain Tumour research. So, along with a mate, they have decided to paddle their surf skis around Port Phillip Bay in Melbourne. This is a very long way – more than 250kms. With the date set for January 2016, Callum would love your support! Visit our web site or mycause.com.au Port Phillip Bay Paddle.

Summer 2015-2016


Get Involved

Find us on Facebook. Like us today!

Donating made easy: “Giver” App for your phone A novel way for you to help raise funds for the Brain Foundation through your family and friends. The Brain Foundation is pleased to be in partnership with “Giver”, which has created an app designed to bring the act of donating into the 21st century.

Giver enables you to donate from just 10 cents a day ($3 a month). By joining the Giver community you can inspire hope, create opportunities, transform lives and shape the future. You can support the Brain Foundation anytime, anywhere, with ease and efficiency.

Want to fundraise?

Make a difference today by downloading the app, nominate the Brain Foundation, liking and sharing Giver on Facebook and visiting the Giver website. Please share this on your Facebook and ask all your friends to share it with theirs. We hope you will help start a cascade throughout the community that will reach many

friends and workmates know who you are supporting and keep them up to date with your progress. Everything is taken care of for you.

We welcome your contribution and involvement. Many people who support our work, do so because they have a cause that is close to their heart. Usually, someone close to them has been touched by one of the many diseases that can afflict the brain.

gofundraise.com.au, mycause.com.au, everydayhero.com.au Thanks go to the following: My Cause: the wonderful Zombies of Perth, Brisbane and Canberra, Callum Smith,

Becoming involved and raising funds for research, is as easy as a good idea. See all the varied events which have supported us this year! Visit the online fundraising sites for more inspiration or join one of the many public events or fun runs.

Go Fundraise: Mark Brindley, Jim Read, Luke Gosling, Margaret Curran, Michael Hanavan, Revati Ilanko, Sydney Zombie Walk, Townsville Zombie Walk.

It is easy to set up your individual fundraising page using Go Fundraise, My Cause or Everyday Hero. Let family,

Everyday Hero: to all our fabulous runners in Gold Coast Marathon, Sunshine Coast Marathon, City to Bay, Bridge to Brisbane and City to Surf

people who will be moved to make a very minor contribution that will become much greater if spread throughout the nation. Giver app will be launched 30th November and will be available at iTunes and Google store. Website Link: givercharityapp.com

In Memorium The Brain Foundation warmly thanks the families of the following, who have supported our Research Gift Programme in memory of their loved ones. Ian Donald SEDGEMAN Margaret Helen WALSH Monika HARDY MONENTE John ROWLANDS Jude JACKSON Sada ELIAS Theo HILL Phill HEATH


Regular Giving Would making small, regular donations suit you better than one bigger donation per year?

We gratefully acknowledge the late

Perhaps you should think about making a regular monthly or quarterly donation. Contact our office or download a form and we will do the rest for you.

Colin Arnold THORNTON

Workplace Giving is an easy alternative and your company may even match your donation. Speak to your paymaster for further information.

Estate Planning and Bequests For more information, please call Gerald in our office on

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1300 886 660.

Eileen McDONNELL Roy HITCHENS for their very generous contributions to our Research Programme.

To all our donors. Some people have expressed a concern that the personal details we hold are being shared with other organisations. Brain Foundation wishes to assure everyone that we do not share your details. They are held at the highest level ‘Medical-in-Confidence’ and used only by us.

Thanks to the following companies for their support:

Thank you for supporting brain research through the Brain Foundation To make a donation please visit our website brainfoundation.org.au/donate or use the donation form on the letter enclosed.

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