NeuRA
the
Issue 17
Winter 2016
magazine
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
Cover NeuRA is conducting research to
better understand caregiver stress
NEW TOOL PREDICTS WHETHER LOW
BACK PAIN IS LIKELY TO BECOME CHRONIC
news
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.
01P rof Peter Schofield
02 Dr James McAuley
IN
03 Empathy loss in dementia
BRIEF
04 P rof Simon Gandevia
05 Sedatives and sleep dementia
06 Dr Phu Hoang
WORKSHOP AIMS TO AVOID COGNITIVE BIASES
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.
01
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.
04
02
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.
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.
EMPATHY LOSS IN 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
05
03
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.
01
06
SEDATIVES AND SLEEP APNOEA
BALANCE IMPROVED IN MS
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.
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.
02
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 02 9399 1000.
If you would like to subscribe to our magazine, go to neura.edu.au/subscribe/mag.
You can also email your details to [email protected] or call 02 9399 1000.
Editor: Chelsea Hunter Photography: Anne Graham
Writers: Chelsea Hunter,Designer:
Anne Graham
Kristian Molloy
feature
story
experience
THE CARER’S
H
I
V
A N D AG E I N G
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.
news
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.
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.
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.
01
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.
03
02
“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.”
03
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 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 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.
01 D
avid Foxe runs through an assessment with a patient
02 S
upport networks are essential for managing stress
03 A
ntiretroviral drugs have an impact on white brain matter
The Frontier group will hold their annual FTD Information Day
for Families and on June 10th here at NeuRA.
04
SC H I ZOPH R E N I A
PR E V E N T ION MOV E S A
step CLOSER
Schizophrenia
Research
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.
BE T T E R
U N DE R S TA N DI NG
of BRAINS
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.
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 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.
03
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.
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.
01
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.
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.
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.”
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.”
01 D
r Duncan Sinclair
What he is describing is targeted individualised treatments.
Duncan believes we may be a long way from achieving that,
02 D
r Kristin Laurens
03 P
rof Cyndi Shannon Weickert
05
02
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.
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.
“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.”
06
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.
“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.”
5
minutes
with
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.
01
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.
07
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.
02
The genes involved in 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.
Research Officer Dr Alex Shaw joined NeuRA
after completing a PhD in cancer research.
He is investigating the genetic underpinnings
of bipolar disorder.
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.
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.
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 9399 1888.
The Standing Tall team will get back to you
within 5 working days.
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.
01 D
r Kim Delbaere
02 D
r Alex Shaw
03 H
ow the mandibular splint works
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.
03
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.
08
Making
a difference
Honouring
A LOVED ONE
WILL YOU HELP
DONATION & RESEARCH
DONATION
& RESEARCH
VOLUNTEER FORM
VOLUNTEER FORM
Discover, Conquer and Cure?
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.
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.
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.
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.
“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.”
A party for JEANNE
Sadly, Michelle passed away in 2015.
P
Bes
02
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.
\
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.
“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 2016!
01
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.”
Step 1: How I choose to give my gift:
Step 2: My gift:
03
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.
02 Maria Venuti and Jeanne Little
03 G
eorge Kostakis and grandson
04 G
eorge before his diagnosis
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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.
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• Call us on 1300 888 019 to make a donation over the phone
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• Make a secure online donation at neura.edu.au/donate
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Thank you for generously supporting our research into diseases
of the brain and nervous system.
Neuroscience Research Australia Foundation, PO Box 1165, Randwick NSW 2031 ABN 57 008 429 96
in
focus
Aboriginal artist
Mary Jane Page
was approached
by NeuRA to
create a painting
that reflects
the experienced
of dementia.
ART
Expressing 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
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Neuroscience Research Australia, Margarete Ainsworth Building, Barker Street, Randwick NSW 2031
Phone: 02 9399 1000 Email: [email protected] Website: neura.edu.au
To make a donation in support of our research, call 1300 888 019 or go to neura.edu.au/donate