approaches to awareness & fundraising for...future trends in ad in australia “any actual delay...
TRANSCRIPT
APPROACHES TO AWARENESS & FUNDRAISING
FOR ALZHEIMER’S DISEASE
Professor Ralph N. Martins AO
Director, Centre of Excellence for Alzheimer’s Disease Research and Care,
Edith Cowan University &
Professor of Neurobiology, Department of Biomedical Sciences,
Macquarie University
Talk outline
⊸ Alzheimer’s disease (AD) statistics
worldwide and in Australia
⊸ Roads to raising awareness & funding
for AD
⊸ AD foundations
⊸ Alternate funding approaches
Examples of worldwide AD statistics
• 4.6 million new cases every year
• The number of people with dementia is
expected to double every 20 years -
81.1 million patients by 2040
• 43% of cases need significant care
(equivalent to a nursing home)
This Photo by Unknown Author is licensed under CC BY
Estimated increase in dementia worldwide
Ronald Reagan
(actor/former
President)
Rita Hayworth
(actress)
Hazel Hawke
(Australian ex-
prime minister’s
wife)
No-one is immune from developing AD
Early Onset Familial Alzheimer’s Disease
Lorinda Klaric
Lorinda Klaric, a young woman
from Western Australia, was only
36 when she died, with 3 young
children.
Lorinda’s mother also had AD, and
was 40 when she died.
$406
$471
$540
$604
$615
$924
$1340 GDP (Billion USD) $96.4 Billion in direct costs related to medical care (e.g. Hospital care, drugs, and visits to clinics)
$255.7 Billion in direct social care costs from formal services outside of the medical care system (e.g. Home care and transport) $251.9 Billion in indirect costs (e.g. Unpaid care by loved ones)
If Dementia were a Country, it would be the
world’s 18th Largest Economy
15th
largest
21st
largest
Future trends in AD in Australia
“any actual delay in the onset of dementia as a result, for example, of dementia research and medical breakthroughs would have a dramatic impact on the future number of cases and the real costs of dementia.”
– Access Economics 2005 Dementia Estimates and Projections -
Within two decades dementia will be the third greatest source of health and residential aged care spending
– approximately 1% of GDP –
Spending on dementia will surpass any other health condition by the 2060s
Delay of Onset 2020 2040
5 Months $1.3 Billion $6.6 Billion
5 Years $13.5 Billion $67.5 Billion
Alzheimer’s Australia Access Economics report “Keeping dementia front of mind”, 2009
Recent research findings provide new opportunities:
It is now known that:
Alzheimer’s disease develops for at least 20 years before symptoms start. Approximately 30% of people
over the age of 60 years have preclinical AD. This preclinical diagnosis allows early intervention
The earliest stages indicate chronic inflammation, insulin resistance,
diabetes type II, dyslipidaemia and hypertension all increase risk of conversion to clinical AD
– mostly preventable conditions
New drug therapies, dietary recommendations, multimodal lifestyle
interventions and education are likely to slow or prevent the onset of
dementia from AD
AD incidence as an iceberg, with asymptomatic
people currently invisible
Recent medical
advances show this
Current statistics
show this
Over time, these people will
develop symptoms too
People with AD, and then all the carers,
professionals, and family looking after them
Carers and
professionals
required to look
after people with
AD
Family affected by
people with AD
People with AD
Remember why slowing disease progression
is so important:
Delay of Onset 2020 2040
5 Months $1.3 Billion $6.6 Billion
5 Years $13.5 Billion $67.5 Billion
Alzheimer’s Australia Access Economics report “Keeping dementia front of mind”, 2009
50 60 70 80 90
Increasing
damage to
the brain
caused by
Alzheimer’s With any treatment that will
significantly slow disease
development, or reduce
risk factors
Current
outcome
Increasing age
Enough
damage to
cause onset of
symptoms
2. Roads to raising awareness
& funding for AD
Transition from competitive funding to increasing inclusion of public funding
Competitive funding (Year 1990- 2000) :
1. Alzheimer’s Association
2. NHRMC 3. Department of Veteran
Affairs
Initiation of Alzheimer’s
Research Foundation (Year
2001-2003) : 1. Neuroscience
Research Foundation
(NRF)
Maturation of existing McCusker
Alzheimer’s Research Foundation (2004-
2015) & Establishment of a New Foundation
(Year 2016-present) : 1. NRF MARF
AARF 2. Lions Alzheimer’s
Foundation (LAF)
• McCusker Alzheimer’s Research Foundation (MARF)
• Australian Alzheimer’s Research Foundation (AARF)
Funding Sources
Government University Public & Corporate
Leveraging of
public funding
e.g $5.6 million
from AARF
leveraged $11.75
million from the
Federal
Government
28%
58%
14%
Research funding within 7 years: Co-operative Research Centre for
Mental Health
Public & Corporate (e.g AARF)
Government (CRC)
University (ECU)
Financial Support for Research 2010 – mid 2018 from MARF and AARF
Duration (years) Key projects:
AIBL, CRC, Imaging, Testosterone Study, DIAN,
PET scanner
Additional research cost (i.e staff salary and
others)
2010-2012 $3,300,000 $700,000
2013 $1,100,000 $100,000
2014-Mid2018 $5,400,000 $700,000
TOTAL $9,800,000 $1,500,000
GRAND TOTAL =$11,300,000
3. AD Foundations
Where are we?
In PERTH:
Edith Cowan University,
Alzheimer’s Australia Research Foundation,
Lions Alzheimer’s Foundation
In SYDNEY:
Macquarie University,
KaRa MINDS Institute,
Anglicare
Overview: AARF (formerly
the McCusker Alzheimer’s
Research Foundation
⊸ History
The McCusker Alzheimer’s Research Foundation Inc. was
established in 2001, and was renamed the Australian Alzheimer’s
Research Foundation in 2016.
⊸ Objective
To increase understanding of the causes of this devastating disease,
develop an early diagnosis, and identify treatments and interventions
aimed at:
1.Preventing the development of the disease
2.Delaying its onset
3.Slowing or stopping its progression
4.Improving treatments once the condition has developed
⊸ Fundraising
Sir James McCusker provided vital funding through the University of
Western Australia (UWA) to support student research projects under
Professor Martins’ supervision which allowed for the significant
expansion of AD research
Australian Alzheimer’s
Research Foundation
website :
https://alzheimers.com.au/
AARF : What We Do Collaboration
At the Sarich Neuroscience Research Institute (NRI), our team will be able to build
on fledgling work with:
• Ear Science Institute Australia examining the link between hearing loss and
dementia;
• Parkinson’s disease research with WANRI, recognising that frequently features of
both diseases are found together in the one person;
• and continue research into the relationship between AD and diabetes, with Curtin
University.
The Ralph and Patricia
Sarich Neuroscience
Research Institute (NRI)
With a $2.4million grant from LotteryWest already committed, as well as a partnership
with Lions Clubs who are raising funds Australia-wide for provision of essential laboratory
equipment, the NRI will allow AARF the opportunity to lead the future of AD research.
AARF : What We Do DIRECTOR OF RESEARCH
Prof Ralph Martins AO
Chair of Alzheimer’s and Ageing at Edith Cowan University
Professor Ralph Martins’ research is conducted under the auspices of Australian Alzheimer’s
Research Foundation and the Centre of Excellence for Alzheimer’s Disease Research and
Care.
CONSULTANT GERIATRICIAN
Assoc. Prof. Roger Clarnette MBBS, FRACP, PhD
Medical Director, Clinical Trials Division
Research leaders
Assoc. Prof. Giuseppe Verdile BSc, PhD
Deputy Director of Research
Medical Research Scientist (Curtin University)
Kevin Taddei BSc (Medical Science)
Deputy Director (Research Management)
Molecular Research Scientist (ECU)
Assoc Prof Simon Laws
Deputy Chief Scientific Officer
CRCMH
Medical Researcher (ECU)
POST-DOCTORAL RESEARCHERS
Dr Hamid Sohrabi
Dr Stephanie Rainey-Smith
Dr Tejal Shah
The research group
has people with
expertise in a wide
range of related topics
Overview:
Lions
Alzheimer’s
Foundation
(LAF)
⊸ The Lions Alzheimer’s Foundation
(LAF) was launched in Perth,
Western Australia, in 2016, after
more than 10 years of fundraising
from Lions clubs throughout
Australia.
⊸ Fundraising
In the last ten years, Lions members in
WA have raised hundreds of
thousands of dollars in funding for
equipment and Alzheimer’s research.
Members go out into the community to
raise funds through various activities.
Lions Alzheimer’s
Foundation
website :
http://lionsalzheimers
foundation.com.au/
Dr Tejal Shah and Dr Sunil Gupta
Hyperspectral Retinal Imaging As An Early Diagnostic Test For Alzheimer’s Disease
Lions Clubs of Australia (LAF)
To develop a single-visit, label-free eye test for the diagnosis and prognosis of preclinical/clinical AD
Metabolic Hyperspectral Retinal Camera (MHRC)
The NASA-inspired
technology allows non-
invasive localisation of
structures and biological
molecules in the retina
using their specific
spectral signatures.
At present, this feature is
not available in other
commercially available
retinal cameras.
Preliminary Findings
Hyperspectral retinal images captured at 540/630/810 nm wavelengths. A. Spatial maps are built and 16
textural features are extracted around the retinal vasculature. B. Anatomical masking from retinal
segmentation. C. Retinal textural features provide excellent discrimination of PET Aβ +ve versus -ve with
sensitivity and specificity values of 85% and 97% respectively n=11 AD and n=14 controls (unpublished
data, Optina Diagnostics, Canada)
Sydney cohort, n=7 participants Montreal Cohort, Canada; n=40 participants
LAF Investment in the future
⊸ Raising funds for purchasing state of the art :
SCIEX QTRAP 6500
mass spectrometer
$1,250,000
Identifying lipid
biomarkers
• Quantitative analysis of
lipids (and more) from
blood
• Sensitivity to find
specific markers in blood
which could be used for
early diagnosis or
tracking disease
progression
Illuminating genetics of
Alzheimer’s disease
• Interrogate SNPs
• Investigate DNA methylation
• Inspect insertion/deletions
• Quantify gene expression
• Versatility and throughput in
generating data that
enhances our understanding
of the significant genetic
components of AD
Agena MassARRAY system
$500,000
Monitoring molecular
binding
• Real-time analysis of molecular
binding interactions
• Investigate protein-protein
interaction
• Determine binding kinetics
• Use in development of Aβ
neutralizing peptides
GE Healthcare Biacore T200
$380,000
LAF Investment in the future (cont’d)
⊸ Raising funds for purchasing state of the art :
Validating blood
biomarkers
• Quantitative analysis of
protein levels using
antibody-based assays
• Multiplex measurements
for maximum information
from precious sample
• High sample throughput for
efficient testing of large
cohorts
Mesoscale Diagnostics
SECTOR S 600 $300,000
Discovering biomarkers
• Difference Gel
Electrophoresis (DIGE)
platform
• Reduces inter-gel variation
• Enhances sensitivity
• Discover differentially
expressed protein markers
in biological samples Typhoon FLA9500 and
DIGE system
$250,000
SIMOA HD-1
$250,000
Discovering biomarkers
• a digital form of ELISA,
with average a 1000-fold
improvement in sensitivity
over current immunoassay
techniques
Overview:
KaRa MINDS
⊸ The KaRa Institute of Neurological Diseases
is a unique, Sydney based memory clinic and
clinical trials facility that was established in
2015
⊸ In the last three years, KaRa MINDS has an
income of over $1 million per year. During this
period, the debt has been paid off and the
equivalent of two full time researchers have
been funded.
KaRa MINDS
website :
http://www.karaminds
.com.au/
KaRa MINDS : What We Do
3. Alternate funding approaches
Over 100,000 copies sold; for every
book sold, $2 is donated to the
Lion’s Alzheimer’s Foundation
Other options to fundraising:
Fun Runs, triathlons, other sports events, Raffles
Asking for bequests
Raise profile of your cause – create website, Facebook
page, have twitter presence, have weekly/monthly
updates – have link for online donations
Organising charity dinners/talks
Approaching political parties at election time,
or people with a record of philanthropy
(eg Bill Gates, in Australia Andrew Forrest
(mining magnate))
