chief executive officer - Leukaemia Foundation of Queensland

Transcription

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Alex Sullivan age 2
LEUKAEMIA
FOUNDATION OF
QUEENSLAND
Annual Report 2013-14
LEUKAEMIA FOUNDATION OF QUEENSLAND 2013-14 ANNUAL REPORT
CONTENTS
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MESSAGE FROM THE PRESIDENT
MESSAGE FROM THE CHIEF EXECUTIVE OFFICER
YEAR AT A GLANCE
SUPPORT SERVICES
RESEARCH
FUNDRAISING
-DONAR DEVELOPMENT AND MANAGEMENT
-FUNDRAISING EVENTS
-COMMUNITY FUNDRAISING EVENTS
TRUSTS AND FOUNDATIONS
GIFTS IN WILL
PARTNERSHIP HIGHLIGHTS
VOLUNTEERS AND MEMBERS
MARKETING AND COMMUNICATIONS
ABOUT US
-ORGANISATIONAL CHART
OUR BOARD
OUR PEOPLE
FINANCIAL OVERVIEW
HOW YOU CAN HELP
MESSAGE FROM THE
CHIEF EXECUTIVE OFFICER
MESSAGE FROM
THE PRESIDENT
On behalf of the Leukaemia Foundation of
Queensland I am delighted to present the 2013-14
Annual Report.
The past year has seen our staff and volunteers
working hard to make a positive difference in the
lives of the six Queenslanders who are diagnosed
with a blood cancer every day.
We have continued to implement our
comprehensive five-year strategic plan which has
seen us move forward to face the challenges of
the ever-expanding not-for-profit market, focussed
on providing the best possible support for patients
and their families and significantly increasing our
investment into research.
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I am always overwhelmed and inspired by the
patients and families who express their enormous
gratitude for our exceptional facilities, services and
commitment to finding a cure and better treatments.
This is, and always will be, our core work.
This year we had a 3.6% increase in the number of
new patients referred to the Foundation who were
facing the very difficult journey that comes following
a blood cancer diagnosis - and this number
continues to increase.
This increase in patient referrals has resulted in part
from our increased efforts to connect with more
patients and carers – we don’t want anyone who is
diagnosed with a blood cancer to fall through the
gaps.
We have been quick to respond to our ever
changing environment including the growing trend
towards decentralisation of health services. Blood
cancer patients will be increasingly able to access
oncology services closer to home rather than having
to travel to Brisbane and Townsville. In response
to this, the Foundation has employed a full-time
Support Services Coordinator at the Gold Coast
which will give local patients and families improved
access to our services and face-to-face support. In
2014 we will appoint a Support Services Coordinator
in Cairns.
As a not-for-profit organisation we have continued
to rigorously review our processes, ensure our
financial stability and integrity, and deliver on our
vision in a responsible and accountable manner that
always puts first the wellbeing, dignity and comfort
of our patients and their families.
I am very proud of what we have achieved and
acknowledge that none of this would be possible
without the dedication of our staff and volunteers,
and our individual and corporate donors who have
supported us so generously.
On behalf of the Board, thank you to every person
who in some way added to our collective energy,
resulting in exceptional support and care for people
affected by blood cancers.
BEVERLEY MIROLO OAM
President
Leukaemia Foundation of Queensland
It is with great pride that I present our annual report
for 2013-2014. This year we have delivered a range
of innovative projects to build greater connectivity
with people living with blood cancers, improve
patient outcomes and create a more sustainable
organisation into the future.
With the goal of connecting with more patients
and carers we are boosting the number of support
staff on the ground in regional Queensland as
well as developing new online services. We
launched our first webinar series as part of our
commitment to make information accessible for all
people regardless of location. Along with recorded
webinars, our YouTube channel contains videos
about disease and treatment information, patient
stories, and recordings of our Brisbane seminars.
Another important initiative was the introduction
of our Fit to Thrive exercise program developed in
response to evidence from Survivorship Research
we funded showing how we can best support
patients through diagnosis, treatment and beyond.
Developed in partnership with Aspire Fitness and
Rehabilitation (AFR), the 12-week personalised
program was offered free-of-charge to patients
and those who completed the program have been
overwhelmingly positive about the life-changing
physical and emotional benefits.
This year we invested a record $1.6 million in blood
cancer research – an increase of more than 35%
on the previous financial year. This funding has
led to promising laboratory discoveries, potential
new treatments and therapies, and clinical and
psychosocial studies on improving outcomes for
patients.
Our research investment is a critical part of our
mission to support blood cancer patients. We will
not only continue investments in basic science, but
we will be investing more in projects that transform
laboratory discoveries into meaningful health
outcomes. This includes clinical trials as well as
translational research. We also invested $280,000
in the Australasian Leukaemia & Lymphoma Tissue
Bank in Brisbane to ensure this important research
infrastructure is maintained and available to all
researchers.
We are taking an enormous step forward in the
area of patient and family accommodation with the
purchase of 30 apartments over the next three years
in the new RNA Development in Brisbane. Due to
increased building costs and a lack of suitable and
affordable land close to treating centres, we cannot
continue to meet accommodation demands by
building purpose-built villages. These apartments
will give patients and families free, premium
accommodation, and provide a flexible, scalable,
cost effective and sustainable approach to providing
accommodation into the future.
This year our fundraising activities raised over
$9.3 million and we continued to look for innovative
and cost effective fundraising methods. We have
made significant strides in the areas of Gifts in Wills
and donor development, and continue to look for
ways to enhance our proven fundraising events
such as World’s Greatest Shave which raised
$4.5 million in Queensland this year. The expansion
of our fundraising programs are critical to improving
outcomes for patients. We are enormously grateful
to every person who has donated money and time
to help advance our work.
Finally as we enter our 40th anniversary year, we
haven’t lost sight of the organisation’s history and
the tireless work of staff and volunteers who went
before us. We are determined to never accept the
status quo when there are still so many people who
need our help. We will not rest until we have beaten
blood cancer.
WILLIAM PETCH
Chief Executive Officer
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RNA DEVELOPMENT
YEAR AT
A GLANCE
Plans were established to
purchase up to 30 apartments
in the new RNA Development
in Brisbane over the next
three years, to provide
a more sustainable and
flexible approach to patient
accommodation.
WEBINARS
FIT TO THRIVE
RESEARCH
Record funding - an increase of
more than 35% on the previous
year - led to promising laboratory
discoveries, potential new
treatments and therapies, and
clinical and psychosocial studies
focused on improving outcomes
for blood cancer patients.
MORE REGIONAL
SUPPORT
Support Services Coordinators
were employed on the Gold
Coast and in Cairns to provide
blood cancer patients and their
families with additional local
support, as well as access to
local seminars and programs.
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The Fit to Thrive program
was introduced - a 12 week
personalised exercise program
to assist patients before,
during and after treatment.
All participants reported an
increase in muscle strength
and most said their balance,
coordination and energy levels
improved.
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WORLD’S
GREATEST SHAVE
TISSUE BANK
2014 World’s Greatest Shave
raised a fantastic $4.5 million
in Queensland. More than 6100
Queenslanders registered to take
part in one of Australia’s largest
fundraising events.
As part of our commitment
to supporting vital research
infrastructure, we increased funding
to the Australasian Leukaemia &
Lymphoma Tissue Bank at Princess
Alexandra Hospital in Brisbane
to ensure blood cancer research
continues.
Webinars were introduced
to allow people living in
regional areas, or those not
well enough to leave home, to
watch Leukaemia Foundation
presentations by haematologists
and health care professionals
from the comfort of their home.
Five webinars were held in the
past 12 months.
LIGHT THE NIGHT
More than 7500 Queenslanders
gathered in 13 locations across
the state to raise awareness
and funds for people affected
by blood cancers and their
families.
NEW CENTRAL OFFICE
VOLUNTEERS
Our volunteer army provided
invaluable support and financial
saving to the Foundation. In
Brisbane alone, approximately
5,700 hours were volunteered
which translated to a saving for
the Foundation of around
$136,700.
The Foundation’s administrative
hub was moved in March 2014
after a building was purchased
on St Pauls Terrace in Brisbane’s
Fortitude Valley. The new building
represents a great investment for
the Foundation’s future growth.
BRAND CAMPAIGN
The Foundation developed two
television commercials to build
awareness of the increasing
number of people being
diagnosed with blood cancers
and the support we provide.
SUPPORT
SERVICES
Contact with patients and
carers increased by 23%
and $130,797 of financial
assistance was provided to
patients and families.
SUPPORT SERVICES
FIT TO THRIVE –
RESEARCH INTO ACTION
In February 2014 we actioned findings from our
survivorship research and introduced Fit to Thrive, a
12-week medical exercise program. Previous studies
found that patients who undertook physical activity
could decrease fatigue, improve strength, protect
against disease recurrence and improve overall
quality of life. The Support Services Team worked in
partnership with Aspire Fitness and Rehabilitation
(AFR) to increase our collective impact to benefit
patients. The program has groups of approximately
six people completing a range of group and
individual exercises in the Aspire gym, as well as
undertaking an at-home program.
At the end of 2013-14, four groups had completed
Fit to Thrive with an additional two groups halfway
through the program. Fit to Thrive has had a
tremendous response; participants have told us that
the program has literally turned their lives around.
A preliminary research report showed excellent
results, with every participant saying they had
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seen an increase in muscle strength at the end of
the program, with many also saying they had an
increase in balance, coordination and energy levels.
Due to these excellent results and the positive
response of participants it is anticipated that nine
groups, or around 54 patients, will participate in
Fit to Thrive next year, and the program will be
extended into regional areas. We are grateful to The
Sylvia and Charles Viertel Charitable Foundation for
partly funding this valuable program.
2670
$130,797
PEOPLE UTILISED OUR
SUPPORT SERVICES
PROVIDED TO PATIENTS AND FAMILIES
IN THE FORM OF FINANCIAL ASSISTANCE
1046
PEOPLE ATTENDED ONE OF
OUR INFORMATION SEMINARS
AND WORKSHOPS
This is equivalent to 39,586 nights of free accommodation
NEW COMMUNICATIONS
INITIATIVES
In May 2014, we launched our new webinar service.
Webinars are seminars conducted over the internet
in real time, giving patients the benefit of watching
presentations given by health professionals from the
comfort of their home or hospital bed. Webinars are
making information more accessible to patients and
carers, particularly those in rural and regional areas
who are unable to travel to our villages for seminars.
The webinar program has been very well received
136,930
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Pain levels
Flexibility
Feeling of fatigue
Energy levels
Sleep patterns
Cardiovascular fitness
Coordination
‘I found it very informative and it
answered a lot of my questions.’
Balance
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Muscle strengthening
20
0
Increase
The same
Decrease
N/A
INCREASE IN OVERALL
PATIENT AND CARER
CONTACT
THIS SAVED PATIENTS AND FAMILIES
MORE THAN $105,000.
‘I live 500km west of Brisbane,
so this made it accessible to me.’
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23%
KILOMETRES WERE TRAVELLED
AND 8530 PASSENGERS WERE
TRANSPORTED BY OUR COURTESY
PATIENT VEHICLES
by patients and carers, with many of them telling us
it’s been an ideal and convenient way for them to
access information without the burden of travel:
Physical changes in participants post-Fit to Thrive
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WE SAVED REGIONAL
PATIENTS AND THEIR
FAMILIES WHO NEEDED
TO RELOCATE FOR
TREATMENT $4.75 MILLION
IN ACCOMMODATION COSTS
‘It was good to access good information
from the comfort of my lounge room.’
In addition to our webinars, we have increased
the number of online resources on offer to
patients and carers. This is a direct result of
hiring a dedicated Communications Officer for
Support Services in November 2013. The role has
had a positive impact on Support Services, with
marketing/communications projects handled more
efficiently and strategically. Other key projects the
Communications Officer has been responsible for
include more online videos and DVDs being made
available; targeted publications, including those
for regional areas; an increase in the promotion of
seminars and events; and an increased social media
presence for Support Services. Having our own
Communications Officer has also meant that both
patients and the general public, including potential
donors, can better understand the support we have
available.
GRIEF
We assisted 318 new families through our grief
services this year, a 29% increase on the previous
year. We have provided them with the Living Well
with Grief newsletter; grief brunches where people
can gather to speak with others going through
a similar journey; a new seminar that looks at
dealing with grief through music therapy; and the
sixth annual Bereaved Parents’ Weekend, where
12 parents who had gone through the difficult
journey of losing a child gathered for a weekend of
workshopping and relaxation.
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KATHERINE’S
STORY
INCREASED CONTACT
The Leukaemia Foundation is committed to
providing holistic, evidence-based support. In 201314 there was an overall 23% increase in contact with
patients and carers due to increased need and an
increased range of services. The range of patient
and carer contact included face-to-face support,
telephone calls, written correspondence and regular
newsletters. Our Support Service Coordinators
made a total of 1460 out of office visits to homes,
schools and hospitals.
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We also improved the access Gold Coast patients
have to our services when we hired the area’s
first fulltime Support Services Coordinator in
May 2014. In line with our commitment to reach
far north Queenslanders, in early 2014 we
commenced recruitment of a Support Services
Coordinator based in Cairns, who will look after an
area stretching from Tully to Cape York. As more
treatment options are becoming available in more
cities, it has been necessary to similarly expand our
reach of Support Services, and have staff members
in more locations throughout Queensland.
SURVIVORSHIP
Many survivors find that they need to adjust to a
new ‘normal’ in the workplace, with some having
to leave their normal profession, reduce their work
hours, or even be re-trained in certain areas while
on the road to recovery. In 2013-14, Support Services
began the process of establishing connections with
community organisations to aid and assist survivors
with re-training and re-entering the workforce. It
is expected that a more solidified ‘Return to Work’
program will take shape in 2015.
CARER CONTACT
Our services specific to carers were very popular
this year, with the total number of contact with
carers up 74% on the previous year. Programs
included the Caring for the Carer workshops; the
Relax, Breathe and Release program, which helps
participants to utilise relaxation techniques; and
general counselling and support sessions.
EDUCATION PROGRAMS AND
PRACTICAL SUPPORT
Over the past year, we delivered 68 educational
seminars and workshops that attracted 1046
attendees. Our educational seminar series covered
a range of topics including lymphoma, leukaemia,
myeloma, amyloidosis, MDS, MPN, grief, carers and
health professionals. We also ran a special World
Lymphoma Awareness Day seminar in September
2013, and a World Myeloma Awareness Day seminar
in May 2014. Our Coffee, cake and chat program
also expanded to include lymphoma and myeloma
groups, giving more people the chance to relax in
an informal setting, share their story and meet with
other patients.
In 2013-14 we also doubled the number of
leukaemia seminars and the number of generic (i.e.
a topic that relates to any blood cancer/disorder)
seminars. We were also honoured to welcome
world-renowned German researcher, Dr Martin
Müller, who presented a talk on CML at our ESA
Village in March 2014.
We’re grateful to all of the doctors and health
professionals who, by donating their time to present
their seminars, support the Foundation in providing
quality education programs around Queensland.
LOOKING AHEAD
We have been quick to respond to the trend
towards the decentralisation of Queensland Health
services. We have support groups developing
on the Gold Coast, as well as a Memorandum of
Understanding with the Gold Coast University
Hospital. Our new Support Services Coordinators
on the Gold Coast and in Cairns will also be working
closely with local patients to understand their
needs, and new programs will be offered including
relaxation and carer support groups.
We are also looking forward to continuing to work
with our branch network. The branches donated
over $18,000 in December 2013 to provide
Christmas hampers to our village residents, as well
as local needy families. This generous contribution
was very much appreciated.
The night before her wedding, when most brides
are packing for their honeymoon, 23-year-old
Katherine Baker was dealing with the shock of
being diagnosed with Hodgkin lymphoma.
Prior to her wedding on 11 August 2012, Katherine
was rushed to Brisbane for a variety of tests
and appointments, and she and her fiancé Luke
received the news of her diagnosis on the night of
their rehearsal dinner.
Despite not really understanding what lay ahead,
Katherine and Luke went ahead with their wedding.
‘Luke and I had the most amazing wedding day,’
Katherine said. ‘It was everything I had ever
dreamed of. In a way, my diagnosis helped
me appreciate my wedding day so much
more than I ever thought possible.’
The couple cancelled their three
week honeymoon to America and
Katherine started treatment on the
Monday following the wedding.
‘On my 24th birthday I started
chemo at St Andrew’s Hospital in
Toowoomba. Despite the treatment,
the lump in my neck kept growing and
my doctor said I needed to start a more
aggressive chemo regime,’ Katherine said.
‘Within two days of contacting the Foundation, we
were provided with free accommodation at Clem
Jones - Sunland Leukaemia Foundation Village in
Brisbane. Our apartment had everything we could
possibly need to live comfortably, and they also
provided transport to and from the hospital. The
girls in the office were always available for a
chat and emotional support whenever it
was needed.’
‘We are so grateful for the support we
received–without it, Luke and I would
have struggled a lot.’
Katherine finished chemotherapy in
March last year, was given the all clear
on 10 April and completed five weeks of
radiation in July.
‘We were in Brisbane for six months while I received
treatment and the most amazing support from the
Leukaemia Foundation of Queensland.’
‘He also said I would need a full time carer, so Luke
and I put our lives on hold, left our jobs and moved
to Brisbane.’
‘It has been a long process, but my workplace has
been amazing, which has allowed me to gradually
increase my hours as my body allowed.’
‘We were in Brisbane for six months while I received
treatment and the most amazing support from the
Leukaemia Foundation of Queensland.’
‘Although this is the hardest thing I have ever had
to do, it has definitely made me a stronger person
and showed me that there are some truly amazing
people in this world.’
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RESEARCH
AIMS AND ACHIEVEMENTS
TISSUE BANK
We are committed to finding answers to the most
important questions about blood cancer, funding
research that will take us a step closer to beating it.
Funding was increased for the Australasian
Leukaemia & Lymphoma Tissue Bank in Brisbane
as part of our commitment to support vital research
infrastructure. This facility stores clinical tissue
samples in a temperature-controlled environment
for use in ethically approved research. We invested
$280,000 to ensure tissue continues to be available
for blood cancer research projects.
Decades of research have improved survival rates
and treatment for people with blood cancers
including leukaemia, lymphoma and myeloma.
However, blood cancer remains the third biggest
cause of cancer death in Australia - so ongoing
research is vital.
In 2013-14, we invested a record $1.6 million in
funding for world-class blood cancer research
at key research institutes across Brisbane – an
increase of more than 35% on the previous
financial year.
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RESEARCH GRANTS
LEUKAEMIA FOUNDATION
RESEARCH UNIT
We provided almost $600,000 to the Leukaemia
Foundation Research Unit at QIMR Berghofer
Medical Research Institute. Headed by Professor
Andrew Boyd, internationally recognised as a
leader in haematological cancer research, the lab
is exploring the biology of leukaemia and other
cancers through studies of leukaemia-associated
proteins.
A major project is to understand the function of Eph
and ephrin membrane proteins, which are highly
expressed in many human cancers where they
contribute to tumour spread and invasion. Preclinical models have shown that both antibodies
which target Eph proteins and soluble forms of their
ephrin ligands can be used to target tumours and
inhibit tumour growth. Recent highlights include the
completion of a Phase 1 trial in leukaemia with no
significant safety issues but evidence of disease
response in acute myeloid leukaemia (AML). These
findings were published in a number of high profile
journals. Further testing may pave the way for the
antibody’s use as a treatment.
PSYCHOSOCIAL RESEARCH
PROGRAM
We funded a three-year program of psychosocial
research examining the financial and social impact
of relocation for patients requiring specialist
treatment. In 2013-14 the Foundation provided
$200,000 towards the research. The research,
conducted by Associate Professor Pam McGrath
from Griffith University, consists of four separate
projects investigating:
»» the financial impact of relocation for patients
»»
»»
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supported by the Foundation;
the socio-demographic profile of patients
utilising the Foundation’s accommodation and
support services;
the pattern of accommodation and support
service usage by all Queensland patients; and
the relocation experience for patients who have
not used the Foundation’s services.
Findings from these projects will be considered in
policy and service delivery planning.
Promising research projects continued to be supported through our National Research Program
including the provision of PhD Scholarships and Grants-in-aid for researchers.
2013 RESEARCH GRANT AWARDS
GRANT RECIPIENT
Ms Therese Vu,
QIMR Berghofer
Dr Steven Lane,
QIMR Berghofer
TYPE OF GRANT
AREA OF RESEARCH
PER ANNUM
PhD Scholarship
(2013-2015)
Investigating factors which
may cause genetic changes in
leukaemia
$40,000
Grant-in-aid (2013)
New treatments for acute
leukaemia
$100,000
2014 RESEARCH GRANT AWARDS
GRANT RECIPIENT
TYPE OF GRANT
AREA OF RESEARCH
PER ANNUM
Dr Steve Mattarollo, Grant-in-aid (2014)
The University of
Queensland
Diamantina Institute
Treating blood cancers by
activating and boosting the
immune system response to
cancer
$99,336
Dr Steven Lane,
QIMR Berghofer
Grant-in-aid (2014)
New ways to optimise stem cell
transplantation
$100,000
Ms Katie Lineburg,
QIMR Berghofer
PhD Scholarship
(2014-2016)
Identifying the cells and
pathways that contribute to
chronic graft-versus-host
disease (GVHD)
$40,000
Several projects initiated in previous years continued to receive funding support from the Foundation.
GRANT RECIPIENT
TYPE OF GRANT
AREA OF RESEARCH
PER ANNUM
Melody Cheong,
QIMR Berghofer
PhD Scholarship
(2012-2014)
Enhancing graft versus
leukaemia effects post stem
cell transplant
$40,000
Danielle Tindle,
QUT Institute
of Health and
Biomedical
Innovation
PhD Scholarship
(2012-2014)
Conceptualising meaning in life: $40,000
The experiences of young adult
cancer survivors
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RESEARCH HIGHLIGHTS
ACUTE MYELOID LEUKAEMIA (AML)
Dr Steven Lane and his team at QIMR Berghofer
have been investigating the role of an enzyme
called telomerase in leukaemia. Normally switched
off after cells have finished dividing, the enzyme
has been found to be more active in myeloid
leukaemia, appearing to enhance the cancer cells’
long-term survival. This may explain why AML can
return despite chemotherapy, and offers a potential
new therapy for leukaemia in the shorter term as
drugs inhibiting telomerase are entering clinical
trials for other cancers. These findings have been
validated in pre-clinical models, and hold promise as
a new approach to prevent relapse after the initial
chemotherapy treatment.
MYELOPROLIFERATIVE NEOPLASMS
(MPN)
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PhD student Therese Vu at QIMR Berghofer is
working to identify the genetic pathways that
commonly transform MPN, a rare blood disorder,
into AML. Her work centres on the role of the
DNMT3A gene in particular which is mutated in up
to 20% of AML cases. By manipulating the gene in
MPN models, she hopes to better understand its
role in MPN and determine whether it has any role
in the development of AML in some MPN patients.
BONE MARROW TRANSPLANTATION
PhD student Katie Lineburg at QIMR Berghofer
has been looking at the cells and pathways that
contribute to chronic Graft Versus Host Disease
(GVHD), one of the most significant health risks for
patients following a stem cell transplant. GVHD is
triggered when the transplanted donor immune cells
begin attacking the host’s skin and internal organs,
eventually destroying the normal tissue and causing
internal organ failure. Katie is particularly interested
in the contribution of molecular signaling molecules,
called cytokines, to this skin tissue damage. Katie
is also looking at cell survival mechanisms that
appear to be particularly important early in the
post-transplant period to find out their role in graft
acceptance or rejection. Katie is hopeful her findings
will lead to the development of novel therapeutics
to improve transplant outcomes.
In another QIMR Berghofer project, Dr Steven
Lane, in collaboration with Professor Geoff Hill and
Dr Kelli MacDonald, has identified a completely
new pathway used by cells to produce a protein
(G-CSF) important for the production of stem cells
in the bone marrow. Clinicians currently administer
a synthetic version of G-CSF to mobilise blood
stem cells into the blood stream so that they can
be harvested for transplantation, however the
therapy isn’t effective in all patients especially if
they’ve already had chemotherapy. The discovery
by QIMR Berghofer researchers could lead to the
development of new drugs to increase blood stem
cell mobilisation and improve the viability of stem
cell transplants in blood cancer patients.
LYMPHOMA
A potential new vaccine to treat non-Hodgkin
lymphoma (NHL), the most commonly diagnosed
blood cancer, is under development at The
University of Queensland Diamantina Institute.
Dr Steve Mattarollo and his team are using preclinical models of NHL to investigate the benefits
of combining the vaccine with conventional
therapy, Rituximab, with the goal to improve patient
outcomes to treatment. While cancers generally
suppress the immune system’s ability to destroy
blood cancer cells, the vaccine is used to re-activate
the immune system to help it better target and kill
cancer cells. Preliminary results are encouraging,
and the vaccine approach is also looking effective
against other blood cancers.
DEDICATED RESEARCH
STAFF MEMBER
social media presence for research. We are
responding to a demonstrated interest from patients
and the general public, including potential donors, in
our research plans and achievements.
LOOKING AHEAD
In a partnership with UQDI and the Queensland
Government, we will commit $1 million over five
years to appoint the Leukaemia Foundation of
Queensland Chair in Blood Cancer Research who
will coordinate a program in near-patient research of
blood cancers.
As part of our five-year strategic plan, we outlined
our plans to increase research funding to $2 million
per year by 2017.
Near-patient research involves clinicians treating
patients in close proximity to their research
laboratories.
We are on track to achieve this, with a budgeted
increase of almost 8% for research spending
for 2014-15 ($1.72 million). This will include the
commencement of funding for the new Leukaemia
Foundation of Queensland Chair in Blood Cancer
Research at The University of Queensland
Diamantina Institute, as well as the new Trials
Enabling Program that will provide patients with
access to international clinical trials.
In the role, researcher and haematologist Professor
Maher Gandhi will oversee blood cancer research
projects at UQDI, and collaborate with research
entities and hospitals across greater Brisbane,
with a view to maximising benefits for patients.
Professor Gandhi’s own line of research focuses on
lymphoma, the most common form of blood cancer.
NEW HIGH LEVEL RESEARCH
APPOINTMENT
In 2014-15 we will co-fund a new position at The
University of Queensland Diamantina Institute
(UQDI), a research facility and partner of the
Translational Research Institute located beside the
Princess Alexandra Hospital in Brisbane.
The appointment reflects the Foundation’s ongoing
commitment to building capacity across the
research sector.
‘I will seek to devise less toxic and more effective
treatments, to establish new biomarkers which
will help determine the most effective treatment
strategies, to monitor response and relapse, and
to understand the development of blood cancers,’
Professor Gandhi said.
Professor Maher Gandhi
Early in 2014 we employed a part-time
Communications Officer for Research to improve
our communications about our research investments
with supporters and the general public. Key
responsibilities of the Communications Officer
include meeting current researchers for updates
on their projects; building relationships with
communications teams at research institutions
in Brisbane; attending networking events with
research stakeholders; preparing research–related
information for publications; updating research
components of our website; and increasing our
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ACCELERATING BENEFITS
FOR PATIENTS THROUGH
RESEARCH
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We are committed to delivering the best possible
health outcomes for blood cancer patients in the
shortest possible timeframe.
Australian blood cancer patients to participate in
international clinical trials not currently available to
them.
Through increased investments in research, we are
exploring ways to fast-track breakthroughs in the
laboratory into new treatments and therapies for
patients so that more people can survive a blood
cancer diagnosis.
These trials will potentially help deliver new
therapeutic drugs to patients years ahead of the
expected availability on the Australian market,
without requiring patients to leave Australia.
As part of our five-year strategic plan for research,
the Foundation will not only continue investments
in basic science, we will be steering research closer
to patient bedsides by investing more in projects
that transform lab discoveries into meaningful health
outcomes. This includes clinical trials as well as
translational research.
Participation in international trials will be particularly
beneficial for rarer blood cancer studies that would
not be able to get the patient numbers needed to
conduct a trial in Australia alone.
Clinical trials test new drugs in patients and are vital
for moving breakthroughs made in the laboratory
into new drugs, diagnostic tools, and other
treatments that improve survival and quality of life.
FUNDRAISING
The Foundation relies on donations and support
from the public to provide services for patients
and their families with blood cancer. Without their
ongoing assistance we would not exist. People
choose to support us in many ways and we are
grateful to everyone who has contributed in some
way to help people through their blood cancer
journey.
Some of the many ways our supporters helped
Donations
Participating in fundraising events
Community fundraisers
Volunteer and members
Gifts in Wills
Trusts and Foundations
Corporate partnerships
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DONOR DEVELOPMENT
AND MANAGEMENT
The Leukaemia Foundation has experienced an
increased demand for services we provide for blood
cancer patients and their families with demand
expected to continue. To ensure the Foundation
can continue to support everyone who needs it, we
need to increase our fundraising efforts.
To achieve this, we have allocated additional
resources in the area of donor development and
management to not only increase revenue through
the introduction of new programs and fundraising
strategies, but to ensure that our donors are cared
for, kept informed about how donations have direct
outcomes for patients, and recognised and thanked
for their contribution to helping people with blood
cancer.
This improved infrastructure means the Foundation
has a more efficient and effective fundraising
platform resulting in greater social impact.
TRIALS ENABLING PROGRAM
The last decade has seen remarkable progress
in the development of new treatments for
haematological malignancies. However, despite
these advances, the majority of adults with blood
cancer will die of relapse or resistance disease.
We are committed to doing all that we can to speed
up the delivery of new drugs and therapies to
improve outcomes for blood cancer patients.
We will fund the Trials Enabling Program in
partnership with the Australasian Leukaemia &
Lymphoma Group, a collaborative clinical research
group that will conduct the trials.
The Foundation has a history of innovation in the
field of research and we trust that by building on our
research investments, particularly in translational
and clinical research, we can move research closer
to patients and provide more effective treatments
sooner.
The year ahead will be an exciting one as we
increase investments in ‘bench to bedside’ research
and roll out a new program that will enable
17
COMMUNITY
FUNDRAISING EVENTS
FUNDRAISING
EVENTS
2013 DOORKNOCK APPEAL
$961,110
Our fundraising events are an important way for
people to engage with the Foundation and see
firsthand how their support makes a difference.
We are so grateful to the thousands of individuals
and organisations who participated in, donated to,
and organised a variety of successful fundraising
events which raised vital funds for patient support
and research.
We are so grateful to the 30,000 Queenslanders
who knocked on 450,000 doors around the state to
raise funds for blood cancer patients.
2013 LIGHT THE NIGHT
$210,500
7513 PARTICIPANTS
Light the Night is a community event to raise
awareness of blood cancers, and to raise funds
to continue the important work of the Foundation.
Thousands of people gathered at 13 Light the
Night events across Queensland to light a lantern
and enjoy a sunset walk to support blood cancer
patients.
Each lantern colour has a special meaning:
»» White lantern for patients and survivors
»» Gold lantern for those remembering a loved one
lost
»» Blue lantern for supporters.
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2013 U.G.L.Y. BARTENDER
OF THE YEAR
$269,000
259 PARTICIPANTS
U.G.L.Y. Bartender of the Year (Understandable,
Generous, Likeable, You) is a fundraising
competition for bartenders. Over a six-week period,
bartenders raise funds through various events and
activities with their patrons. The highest fundraiser
takes out the title of U.G.L.Y. Bartender of the Year.
The 2013 winner was Karyn Williamson from Cooyar
Hotel who raised an outstanding $19,249.85.
Through World’s Greatest Shave, participants shave
or colour their hair to raise funds for leukaemia
research and patient support. To encourage
participants in their sacrifice, they seek sponsorship
from friends, family and work colleagues. In return
for their donation, sponsors have the pleasure of
seeing participants go hairless or coloured.
Anyone can participate in the World’s Greatest
Shave including individuals, teams, schools,
community groups, clubs and businesses.
2013 - 55 FOR 5
$43,000
50 HIKERS
55 for 5 is an outdoor challenge to help raise muchneeded funds for people living with blood cancers.
55 for 5 ‘isn’t a walk in the park’; it is a demanding
hike that is achievable by all age groups. Hikers
walk 55 km in two days over the Sunshine Coast
Hinterland Great Walk.
2014 marked the 12th year the Commercial
Vehicles Industry Association of Queensland held
its President’s Charity Dinner to raise funds for
blood cancer patients and families. Since 2002 this
valuable partnership has raised more than $1.25
million.
2014 FAR NORTH QUEENSLAND
IGA CAR RALLY
$17,000
27 CARS
2014 WORLD’S GREATEST SHAVE
$4.5 MILLION
6163 REGISTERED
The World’s Greatest Shave is the Foundation’s
largest annual fundraising campaign. It is also
arguably one of Australia’s most successful
fundraising events.
2014 CVIAQ PRESIDENT’S
CHARITY DINNER
$181,000
300 ATTENDEES
2014 WORLD’S GREATEST SHAVE
MINING AND ENERGY CHALLENGE
$460,000
47 REGISTERED
The Mining and Energy Challenge, part of the
World’s Greatest Shave, is a fun and friendly
competition between companies and sites from
the Queensland resources sector. Over a ten year
period the Mining and Energy Challenge has raised
a total of $3.93 million for blood cancer patients and
their families. In total, the sector has raised in excess
of $4.5 million in support of blood cancer patients.
A special thanks to the Queensland Resources
Council for their support of the Mining and Energy
Challenge.
The 2014 Far North Queensland IGA Car Rally saw
a leisurely tour of Far North Queensland where
teams got together for a fun-filled weekend, while
fundraising for the Foundation. Teams navigated
through this beautiful region by answering a series
of questions and participated in a wide variety
of activities through to the final destination of
Chillagoe.
2014 FAR NORTH QUEENSLAND
IGA RACE DAY
$59,000
410 ATTENDEES
The Far North Queensland IGA Race Day is the third
major local racing event in Cairns after Amateurs
and the Cairns Cup. Over 400 guests attended from
prominent local businesses including the major
sponsors FNQ IGA stores and suppliers. The day
included horse races, fashions on the field, a buffet
lunch and a range of fundraising activities including
auctions and raffle with the proceeds benefiting the
Foundation.
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TRUSTS AND FOUNDATIONS
We would like to thank the following Trusts and Foundations for their generous financial support.
NAME
DATE
AMOUNT PROJECT
The William Angliss Charitable December
Fund
$1500
Towards the running of the ‘Bereaved
Parents’ Weekend’, for those who have lost
a child of any age through a blood cancer.
This amount funded the attendance for two
couples.
Brisbane Advertising
Association – December
Lunch Beneficiary
December
$7000
Replace analogue TV’s - CJS
The Cory Charitable
Foundation
May
$7386
Recarpet CJS Activity Room
The Logan Family Foundation
June
TOTAL
$6500
Towards the Trials Enabling Program
$22,386
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SUPPORTING BEREAVED PARENTS
The William Angliss Charitable Fund has
kindly supported the Leukaemia Foundation of
Queensland since 2005, and for the past two years
has helped to fund the Bereaved Parents’ Weekend.
Our Grief Support Services has provided support
for many parents who have lost children (young or
adult) as a result of blood cancer.
For this reason, five years ago, the Foundation
introduced the Bereaved Parents’ Weekend held on
the Sunshine Coast hinterland. In that time parents
from all walks of life have attended this special
event and shared how wonderful it was to be with
other parents who understood their pain.
The weekend aims to give parents an opportunity
to come together in a tranquil setting for a time of
education and pampering. Those attending have
the opportunity to share memories of their children
with others who are also grieving. It is also an
opportunity for hope and healing while enjoying
activities including great food, massage, music
therapy, sharing stories and making new friends.
‘Needless to say, I’m glad I went. The
setting was perfect - a tranquil natural
hideaway - relaxing from the start. Our
group was a mixture of parents but we
seemed to meld well, each bringing to the
weekend our own heartache, compassion
and friendship to share.’
Annette Campbell
‘We were invited to be part of the
Bereaved Parents’ Weekend and were
joined by another four couples. Initially,
I had reservations about going to the
weekend and pouring my heart out to a
bunch of strangers, but within minutes of
arriving we were all talking openly. We
all cried, laughed, hugged and realised
just how much we all had in common
other than the obvious. We were served
some lovely food and a few drinks and it
all helped to know that we were not alone,
and we were only a small group of the
many in the world in the same situation.’
Rod and Tania
JAD HARRIS
Light the Night ambassador, Jad Harris, is a bright,
determined 30 year old who has the wisdom and
outlook on life of someone twice his age.
This is owed to the fact that as a young man, he
endured four years of illness that has tested his
limits both physically and mentally.
In 2011, 27-year-old Jad Harris had just returned
from four months backpacking around South East
Asia when a routine blood test came back with
worrying results.
Jad’s platelet count, which should have been
between 150-450, was only 3 although he had no
symptoms at all.
‘I had no unusual bruising and normal levels of
energy, so when I was told I had myelodysplastic
syndrome (MDS) and would need a bone marrow
transplant, it took me a long time to come to terms
with the shock diagnosis,’ Jad said. ‘I didn’t even
know what myelodysplastic syndrome was and have
since found out that it is extremely rare in people
under the age of 60.’
Feeling defiant against the disease, Jad spent 12
months following a strict diet and exercise regime
before his family convinced him to be re-tested to
see if the MDS had progressed.
Unfortunately it had. All of a sudden Jad’s life was
turned upside down as he was told it would be
unlikely that he would make it to his 30th birthday
without treatment.
‘When I did come to accept the reality of what the
diagnosis meant and felt prepared to undergo the
bone marrow transplant that I needed it all moved
fairly quickly.’
‘None of my three sisters were a match for me, but
two weeks later a donor was found and I began
the transplant preparation – two days of intensive
chemotherapy and six rounds of total body
irradiation.’
Jad’s transplant was a success although he did have
many complications along the way including terrible
ulcers from his mouth down to his bowels and a
serious case of graft versus host disease (GVHD)
which attacked his lungs.
‘I was told I would be on oxygen for the rest of my
life but slowly my lungs recovered and my lung
function is now better than before my transplant.’
Jad now considers himself a survivor and is keen to
spread a message of hope for others undergoing
what is often many months of harrowing treatment.
He is now determined to enjoy what life has to offer
and is working part-time in Noosa at his father’s
advertising agency, enjoying body surfing, and
keeping fit and healthy.
Jad first attended Light the Night in 2012 a few
months after his transplant.
‘Originally I registered myself and a friend at the
time, but when my family and friends heard about it
they insisted on joining me and we ended up with a
team of 12.’
‘When I first attended Light the Night in 2012 and
saw all the other white lanterns around me, I was
totally overwhelmed with emotion and felt very
proud to be part of this amazing group of people
who were on a similar journey to me.’
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PARTNERSHIP HIGHLIGHTS
GIFT IN WILL
We are extremely grateful for those who have
decided to support the Foundation with a gift in their
Will.
In 2013/14 we received over $1.1 million from 28
generous individuals who chose to remember the
Foundation with a gift in their Will.
Gifts in Wills are an essential source of income for
us, and an easy and powerful way of supporting
people living with blood cancers.
Gifts in Wills help ensure that patients and their
families have access to our vital support services
and programs in the future, and enable us to
maintain our commitment to patients by investing in
research to improve treatments and find cures.
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Many people are passionate about supporting
the Foundation’s work yet are not in a position to
donate on a regular basis at this point in their life.
Leaving a gift in their Will makes them feel happy
knowing the Foundation will benefit from their gift in
time without impacting their lifestyle today.
assist in funding future research into blood cancers,’
Hazel said.
‘A gift in my Will is an easy but
important way that I can say
thank you to the Foundation...’
‘Brian and I were also extremely grateful to the
Leukaemia Foundation for supporting us throughout
his illness. Over the years that Brian was ill, the
Foundation arranged free accommodation for us
when he needed to travel to Brisbane for treatment.’
‘Having accommodation arranged was a huge relief
when we were dealing with so many other things. I
also would have been lost without the Foundation’s
emotional support following Brian’s death.’
‘A gift in my Will is an easy but important way that
I can say thank you to the Foundation and ensure
that its wonderful work continues for other patients
and families. It will also assist the Foundation to
continue to invest in medical research which has the
potential to save many lives in the future.’
Every gift, no matter what size, is greatly
appreciated by the Foundation and the people it will
help in the future.
A GIFT IN BRIAN’S MEMORY
Glasshouse Mountains resident, Hazel Orton, has a
very personal interest in seeing that the work of the
Leukaemia Foundation of Queensland continues to
help other blood cancer patients and their families.
Her husband, Brian, passed away in 2009 from
an extremely rare combination of Waldenstrom’s
macroglobulinaemia (a type of lymphoma) and
amyloidosis.
Hazel said Brian was very keen to see medical
research done into these rare diseases in order to
help future patients.
‘As well as some of Brian’s tissue being stored at
the Tissue Bank for research purposes, I also felt
that leaving a gift in my Will would be a great way to
This year we wanted to highlight some of our long
standing partners and offer special thanks for their
continued support.
BRIDGESTONE:
Bridgestone is one of the
Foundation’s longest standing supporters and in
2010 they became the principal partner for the
Leukaemia Foundation’s Light the Night event.
Bridgestone’s support extends more than two
decades and includes the provision of eight vehicles
for the National Transport Program.
FOLLOWMONT: Followmont Transport
has provided us with campaign support for many
years, and since 2013 we have received yearround pro-bono freight support across the whole of
Queensland. This has saved us thousands of dollars
which we could direct to supporting patients and
families.
LOOKING FORWARD
In the future we look forward to strengthening and
expanding our business partnership network. We
will focus on increasing corporate participation in
campaigns and programs like workplace giving. We
look forward to engaging with new businesses and
looking at opportunities to create mutually beneficial
fundraising and sponsorship packages.
We are also pleased to welcome our newest
partners Westpac, Tappr, Australia-Wide First Aid
and Color Me Rad to our network of support and
we look forward to working with them in the coming
year.
Special thanks to all our partners for their
generosity and support.
NATIONAL PARTNERS
Aon
BHP Billiton
Breezair
Bridgestone Australia Ltd
GM Holden
Hewlett Packard
Hoshizaki Lancer
Seeley International
Toll
Tour de Cure
COLLABORATIVE PARTNERS
Aspire Fitness
Centrelink
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Griffith University
QIMR Berghofer Medical Research Institute
QUT Institute of Health and Biomedical Innovation
The University of Queensland
The University of Queensland Diamantina Institute
The Australasian Leukaemia & Lymphoma Group (ALLG)
AMBASSADORS
James Hanson - Queensland Reds and Australian
Wallabies player
STATE & LOCAL PARTNERS
AngloAmerican
Adams Motor Group
Brisbane Marathon Festival
CVIAQ
Followmont Transport
FNQ IGA Committee
GHD
McCullough Robertson
NRMA Brisbane Broncos
Queensland Freemasons
Queensland Golf
Seven Network
Team Adem
EVENT PARTNERS
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Doon Villa Ladies Bowls Club
Gympie RSL
Halcyon Landing
Holcim
Kennedys Betta Electrical
Lighthouse Hotel - Burnett Heads
Night Owl FNQ
Rotary Club of Townsville
Rydges Esplanade
Shalom College - Bundaberg
St Andrew’s Anglican College
St Luke’s Anglican College
Stanthorpe RSL
Specsavers - North Rockhampton
Ulysses Club - Warwick District Branch
Brisbane City Libraries
Biloela Shoppingworld
Brothers Leagues Club Cairns
Cairns Central
Cairns City Council
Coates Hire
Dance Central
Gold Coast City Council
Grand Central Shopping Centre
High Street Plaza
Hire-A-Loo
Instant-up marquees
Hinkler Central Shopping Centre
Muzic 4 U
Lions Clubs - Bundaberg, Hinkler, Fraser Coast & Fitzroy River
Pig N Whistle - Brisbane
Queensland Reds
Rockhampton City Council
Rose City Shopping World
Smithfield Shopping Centre
Stockland Shopping Centre – Cairns, Rockhampton, Gladstone, Hervey Bay
Supa Catering
Toombul & Lutwyche Shopping Centre
Toowoomba Choral Society
Toowoomba Party Hire
Toowoomba Regional Council
Townsville City Council
Willows Shopping Centre
Xpresso Mobile Coffee
VOLUNTEERING
AND MEMBERS
A loyal and growing army of volunteers provided our
organisation with invaluable support and financial
saving, allowing us to continue our vital work of
supporting blood cancer patients and investing in
research.
In 2013-14 in Brisbane alone, approximately 5,700
hours were volunteered which translated to a saving
for the Foundation of around $136, 700.
Just one example of our volunteers’ fantastic work
was the packing of collector kits for our Doorknock
Appeal. These volunteers saved the Foundation
$6000 and many man hours just on this project
alone.
This financial year saw the continued development
and implementation of a program for effectively
managing and coordinating our volunteers in a way
that supports the Foundation’s strategic vision.
A monthly volunteer newsletter was implemented,
we celebrated National Volunteer Week, and
volunteers’ years of service were formally
recognised – showing our appreciation for their
hard work and acknowledgment of their value to our
organisation.
We had a number of project volunteers who kindly
donated their valuable skills including human
resources specialists, archivists, film producers,
data analysts, and workplace wellness coaches and
facilitators.
Our number of corporate volunteers increased with
Hewlett Packard conducting three working bees
this financial year along with involvement in World’s
Greatest Shave and 55 for 5. GHD has engaged
further with internal fundraising efforts that funded a
working bee. Our major fundraising campaigns were
listed with some of the major financial institutions
such as NAB and Suncorp for event volunteering.
In the coming financial year the program will focus
on continuous improvement and review of the
volunteer program through volunteer feedback and
data analysis.
MEMBER NETWORK
The Foundation’s Member network consisted of 376
dedicated volunteers in 18 branches and groups
across Queensland. This loyal group of volunteers
plays a vital role in raising funds and awareness, as
well as providing information and support to patients
and families in regional and rural communities.
Through sheer hard work and determination our
members raised $212,980 and were involved in
many fundraising activities including providing
Christmas hampers for patients and families staying
in our accommodation villages over the festive
season.
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MARKETING AND
COMMUNICATIONS
STAKEHOLDER RESEARCH AND
BRAND CAMPAIGN
A key strategic focus for the Leukaemia Foundation
of Queensland is to better understand the current
awareness of our brand and perceptions of
our organisation within the charity sector. This
information is critical to improving our fundraising
performance and highlighting to our supporters the
impact of their contributions.
In November 2013 we conducted qualitative and
quantitative market research across Queensland
and nationally.
26
The key findings from the research indicated that
the Leukaemia Foundation has high top of mind
awareness among charities and cancer charities
but this awareness is not translating to a sufficient
level of understanding of the Foundation’s
activities among the general public. There is also
a perception that leukaemia is only a childhood
disease and is mostly curable indicating that there is
no urgent need for funding.
In response to these findings we developed an
awareness television campaign to put leukaemia,
lymphoma and blood cancers back on the agenda
as diseases which are affecting almost 12,000
Australians every year.
The aim of the television campaign was to highlight
that blood cancers can’t be prevented or predicted
and we must all fight to find a cure and support the
Leukaemia Foundation’s vital work until then.
In addition to the general market research with the
public we also conducted multiple surveys with key
stakeholder groups including supporters, staff and
patients. The results from this research are vital in
developing our brand, targeting our communications
and developing successful fundraising programs.
share more relevant and informative content which
raises the profile of the work of the Foundation
but also gives patients and their families new ways
of consuming our information. Video content,
live webinars, blogs and an active social media
presence means the Foundation can reach more
people and give greater support to those affected
by blood cancer.
Our website showed strong growth in 2013/14,
attracting record numbers of monthly unique visitors
and page views.
»» Nearly 11,900 people, including 7,400 from
»»
»»
»»
Queensland, visited our website during 2013/14,
viewing more than 69,000 pages of content.
Monthly unique visitors to our website roughly
doubled in the financial year
Pages about our services attracted more than
2,100 views, our events pages attracted nearly
1,900 views, while our disease information
pages attracted more than 1,600 views.
We commenced work on a new, mobileoptimised website, due for delivery in
November 2014
LOOKING AHEAD
Our focus for the next twelve months is to build
greater awareness of the Leukaemia Foundation’s
brand and improve communications with our
supporters. This will be achieved through the
development of a new brand and awareness
campaign focusing on the Foundation’s core values
and highlighting the direct impact the Foundation’s
work is having on the community. We will also roll
out a new supporter database which will strengthen
our ability to personally engage and communicate
with stakeholders.
ABOUT US
We are proud to be the leading Queensland charity
dedicated to improving the lives of patients with
all types of blood cancer, including leukaemia,
lymphoma and myeloma.
Our priority is to deliver the best possible health
outcomes for patients. We want more people to
survive a blood cancer diagnosis and go on to live
a full life. To achieve this we invest in research and
deliver the best possible range of support services
for patients from diagnosis, through treatment and
beyond. Through our investments in research we
aim to identify the causes of blood cancer, improve
patient diagnosis, develop new and more effective
treatments for patients, and find cures.
When someone is diagnosed with a blood cancer
they are not alone. We give patients and their
families whatever they need to support them
throughout diagnosis, treatment and as they move
forward with their lives. All programs and services
for patients are free and include accommodation,
counselling, transportation to medical appointments,
educational resources, and practical and financial
assistance. Our goal is to arm patients and their
families with information, resources and support to
help reduce stress throughout this difficult time.
Our organisation relies on the generosity of
individuals, communities and businesses to work
with us to achieve our vision to cure blood cancers
and support patients when they need it most.
CORPORATE GOVERNANCE
Our vision to support all blood cancer patients and
investment in lifesaving research is underpinned
by a governance framework that enables the
organisation to meet the needs of our stakeholders,
while managing risk and complying with federal and
state legislation.
DIGITAL COMMUNICATIONS
BOARD OF DIRECTORS
As the Foundation continues to evolve and grow
its fundraising capacity there is a stronger need to
develop more strategic communication practices
which maximise the digital and social media
platforms. Our digital communications focus is to
The Board is structured to provide a balanced skill
set of financial oversight, commercial experience,
clinical and research practice and marketing
expertise. Our Board Members generously give their
time and expertise on a pro-bono basis. The Board
ensures the Leukaemia Foundation’s resources
are used effectively to meet the needs of patients
with blood cancers including leukaemia, lymphoma,
myeloma and related blood disorders. Developing
the strategic plan with the Chief Executive Officer
(CEO) and senior management, the Board ensures
sustainable use of donor funds through review and
oversight, and makes decisions about the allocation
of resources including staff and volunteers.
Reporting to the Board are the CEO and two
committees to ensure broad insight into strategy
development.
ADVISORY COMMITTEES
The Leukaemia Foundation of Queensland is
affiliated with a number of national advisory
committees that are facilitated by the Leukaemia
Foundation of Australia including the National
Medical and Scientific Advisory Committee, Grants
Review Committee and Ethics Review Committee.
The following Queensland-based committees report
directly to the Leukaemia Foundation of Queensland
Board.
AUDIT AND RISK COMMITTEE
The Board ensures adequate policies exist in
relation to risk management, compliance and
internal control systems with assistance from
the Audit and Risk Committee. The Leukaemia
Foundation of Queensland’s policies are
designed to ensure that strategic, operational,
legal, reputation and financial risks are identified,
efficiently managed and monitored. The Audit
and Risk Committee provides additional support
to ensure that the Foundation makes timely and
balanced disclosure to its stakeholders. An example
of how this is done is the review and approval of
budgets and statutory accounts prior to Board
approval.
RESEARCH COMMITTEE
The Research Committee is comprised of
practicing haematologists, clinicians, medical
researchers, nursing professionals and consumer
advocates. This committee oversees research
funding recommendations. The research funding
27
ORGANISATIONAL
CHART
EXECUTIVE
ASSISTANT
RECEPTIONIST /
ADMIN ASSISTANT
CHIEF
EXECUTIVE
OFFICER
CHIEF FINANCIAL
OFFICER
28
29
COMMUNITY
FUNDRAISING
EVENTS
FUNDRAISING
MANAGER EVENTS
COMMUNITY FUNDRAISING
MANAGER
»» Branch Network
»» Community Fundraising Assistant
»» REC Darling Downs
»» REC Far North Queensland
»» REC Gold Coast
»» REC Greater Brisbane North
»» REC Greater Brisbane South
»» REC Ipswich & South West
Coordinator
»» Fundraising Coordinator
»» Senior Fundraising
Coordinator
»» Volunteer Coordinator
Brisbane Corridor
»» REC Mackay / Whitsundays
»» REC North Queensland
»» REC North West Queensland
»» REC Sunshine Coast
»» REC Wide Bay
SUPPORT
SERVICES
MARKETING,
COMMUNICATIONS AND
DONOR MANAGEMENT
ACCOMMODATION
DIRECTOR SUPPORT
SERVICES
ESA Village:
MANAGER PATIENT
ACCOMMODATION
»» Administrative Assistant
»» 5 x Support Services Coordinators
»» Grief Support Services Manager
»» Accommodation Officer
»» Assistant Accommodation
Clem Jones – Sunland Village:
»» 2 x Support Services Coordinators
Freemasons Village:
»» 1 x Support Services Coordinator
Herston Village:
»» 1 x Support Services Coordinator
DIRECTOR OF MARKETING
CORPORATE
CORPORATE
HUMAN RESOURCES
MANAGER
MANAGER
»» Accounts Administrator
»» Accounts Payable
»» Communication & Marketing PARTNERSHIPS
Manager
ESA Village:
Coordinator
»» 5 x Cleaners
»» Grounds / Maintenance Person
»» Patient Accommodation Coordinator
Clem Jones – Sunland Village:
»» Campaigns Manager
»» 5 x Communication and
Marketing Officers
»» Data Entry Operator
»» Database Officer
»» Digital Communications Officer
»» Donor Liaison Officer
»» Graphic Designer
»» Trusts & Foundations Officer
Freemasons Village:
»» 2 x Cleaners
Mincom Village:
HR AND
ADMINISTRATION
*
OUR BOARD
PRESIDENT // BEVERLEY MIROLO, OAM RN
Beverley Mirolo OAM retired as CEO of HOCA from the position of Chief Executive
Officer of Haematology & Oncology Clinics of Australasia (now Icon Cancer Care) in
2007. She has over 30 years’ experience working in the area of blood and other cancers.
Beverley joined the Foundation in 1980 when working as a registered nurse at the
Royal Brisbane Hospital (RBH). With her medical and nursing colleagues, she played
a major role in the planning and development of the Leukaemia Foundation Bone
Marrow Transplant Unit at the RBH Royal Brisbane Hospital. She was also responsible
for the introduction of the first day-only services for patients with blood cancers that include leukaemia,
lymphoma, myeloma and related blood disorders.
30
MEDICAL CONSULTANT (APPOINTMENT) // ASSOC. PROF.
PAULA MARLTON
Paula Marlton is the Head of Leukaemia and Lymphoma Services at the Princess
Alexandra Hospital. She graduated from the University of Queensland with first class
honours and a University Gold Medal. Her professional experience includes three
years at the MD Anderson Cancer Centre in Houston, where she was immersed in
both clinical and research activities.
Beverley has held a number of positions on the Board since 1983 including nursing representative on the
Foundation’s Medical Advisory Committee, Secretary, and was elected President of the Foundation in
2007. Beverley continues her interest in the provision of better outcomes for people with blood cancers
and their families. She was awarded an Order of Australia Medal at the 2010 Australia Day Honours.
Paula has maintained an ongoing commitment to research into leukaemia, lymphoma
and related blood disorders. She served on the Executive of the Australasian
Leukaemia Lymphoma Group (ALLG) for six years establishing and chairing the
Laboratory Science Committee. She founded and continues to direct the National
Leukaemia and Lymphoma Tissue Bank established through the support of the
Leukaemia Foundation. She serves on the QIMR Council and is involved in a broad
range of other academic and advisory services as well as maintaining a busy clinical
practice.
VICE PRESIDENT // ADJ. ASSOC. PROF MARYANNE
HARGRAVES
DIRECTOR // ELAINE GAMER
Maryanne Hargraves is General Manager of Clinical Services for Icon Cancer Care
(formerly HOCA). Icon operates six cancer day hospitals in Australia with three in
Brisbane, one on the Gold Coast, one in Adelaide and one soon to open in Townsville.
Her interests include quality of life outcomes following chemotherapy treatment with a
special interest in supporting patients and their families during and after treatment and
management of lymphoedema. Maryanne is Adjunct Associate Professor in the School of
Nursing & Midwifery at Queensland University of Technology, is a member of the Medical
and Scientific Advisory Sub Committee of the Cancer Council Queensland, Chairperson
of the Cancer Nurses Society of Australia Winter Congress Planning and Development
Committee and has been a member of the Leukaemia Foundation Board since 2007.
SECRETARY // SUSAN MOORE (NEE MALONE)
Susan Moore is a solicitor with over five years of experience and has worked both
in private practice and in-house with Origin Energy. Born and educated in Brisbane,
Susan obtained a Bachelors of Laws and Business Management from the University of
Queensland and is currently in the process of obtaining her Master of Laws.
Susan’s connection with the Leukaemia Foundation began when her father was
diagnosed with leukaemia when she was 11 years old. Since then, she has continued to
have contact with the Foundation, joining the Board in 2008.
TREASURER // DARREN LAARHOVEN
Darren Laarhoven is a partner of UHY Haines Norton Chartered Accountants and is the
primary contact for all the firm’s audits and audit/governance-related assignments. As
Treasurer, Darren brings to the Board skills gained from providing audit and accounting
services to clients who include organisations within the not-for-profit sector. Further, he
was responsible for the audit of the Leukaemia Foundation of Queensland for the financial
years prior to 30 June 2002, which has provided him with an extensive understanding of
the Foundation’s operations.
Elaine Gamer joined the Leukaemia Foundation following her daughter’s diagnosis
and treatment for leukaemia. She became a member in 1979 and was instrumental in
the formation of the Mt Isa Branch. Elaine has been honoured with life membership of
the Mt Isa Branch. In 1987, when Elaine and her husband Mel left Mt Isa to live on the
Sunshine Coast, they were instrumental in starting a branch there.
Elaine was elected to the board in 1988 and has remained a board member since that
time. She is a Justice of the Peace (Qualified).
DIRECTOR // KEITH LEDGER
Keith Ledger first joined the Lions Club of Holland Park in 1969 where he was a
member for approximately 10 years. In June of 1975 he took over as President and in
that year he heard Dr Trevor Olsen talk about the lack of facilities for the treatment
of Leukaemia patients. At this stage Dr Olsen was treating one of the Lions Club
Member’s (Bernie Stevenson) son and as a result of Dr Olsen’s talk, the Club decided
to form the Lions Leukaemia Foundation and Keith was elected inaugural Chairman.
He held this position for two years and the meetings were held every month at his
home in Holland Park. During this time the Lions Leukaemia Foundation managed to
raise $87,000 which allowed them to make various grants and buy a block of flats at
Annerley.
In 1989 Keith rejoined the Board of the Leukaemia Foundation but resigned some time
later due to work commitments. He was elected to the LFQ Board again in 2008. Ten
years ago he rejoined the Holland Park Lions Club as a member.
31
DIRECTOR // JOANNE KEEN
DIRECTOR // ARTHUR ALEXANDER
Joanne Keen is a solicitor with over 14 years’ experience and is currently the General
Counsel at ENERGEX Limited. She holds a Bachelor of Laws (Honours) from the
Queensland University of Technology and a Masters of Laws from Temple University in
Philadelphia.
Arthur Alexander has more than 30 years executive, senior management, and
consultancy experience in private and public sectors across mining, energy, water,
engineering, construction, manufacturing, health, education and consulting industries
in Australia.
Joanne’s husband Tim was diagnosed with acute promyelocytic leukaemia in 1999.
He is currently in his third complete remission having relapsed in 2001 and 2005. Both
Tim and Joanne have spoken at various functions at the request of the Leukaemia
Foundation to raise awareness of the work performed by the Foundation and the
issues faced by patients who have life threatening blood disorders.
Joanne has two daughters, Sarah and Kate who are eight and six respectively and in
her spare time enjoys sailing, kite-surfing, running and cycling.
Arthur has been involved with the Leukaemia Foundation of Queensland for over
25 years, particularly in the area of support services for patients. He established
and remains actively involved with the Foundation’s Taking Control workshop which
addresses the health and wellbeing of patients, families and carers.
Dianne Pinder has a background in accounting, taxation and law, and is currently involved in a family charitable
project, Ex Voto. This Charitable Foundation was established in 2007 as a family project, with the income from
the capital being distributed each year to a number of charities. Since its inception, Dianne has been involved in
the decisions regarding the distribution.
Christopher Murray has 30 years’ experience in the energy, resources and
manufacturing sectors in various roles including Principal, Managing Director and
Executive General Manager. His expertise includes strategy, business development,
research, finance and operations. Chris has a Bachelor of Engineering with Honours, is
a graduate member of the Australian Institute of Company Directors, a graduate of the
Harvard Business School and a member of Engineers Australia.
Dianne holds the belief that we all carry an individual responsibility to contribute our skills and talents wherever
possible including in the broader community. She has endeavoured to fulfill this responsibility through
committee involvement in schools, raising money for various charitable organisations and ultimately by
choosing to establish and assist in the running of her family’s own charitable foundation.
Chris has a close personal connection with leukaemia. In 2006 he was diagnosed
with chronic myeloid leukaemia from which he is now in remission. In 2013 his father
passed away as a result of conditions caused by acute lymphocytic leukaemia. He
understands first-hand the benefits of the Foundation’s work.
Dianne learned about the work of the Leukaemia Foundation of Queensland through the assistance that has
been provided to friends who have had leukaemia. She was extremely impressed by the quality and breadth of
the services provided and also the compassion and caring delivered by the Foundation.
DIRECTOR // DR IAN BUNCE, OAM
DIRECTOR // DIANNE PINDER
32
DIRECTOR // CHRISTOPHER MURRAY
Dianne was appointed to the board in 2008 and resigned from her position in June 2014.
The Leukaemia Foundation thanks Dianne for her service and contribution to the organisation.
DIRECTOR // DEBORAH KACHEL
Deborah Kachel joined the Leukaemia Foundation in 2000 and played a key role
in establishing the Youth Committee of the then Douglas Shire Branch. The Youth
Committee continues to work alongside the branch members to support the vision
of the Foundation. She is the President of the Mossman District Branch (formerly
the Douglas Shire Branch) and the Patient Support Volunteer for the Mossman Port
Douglas area. Deborah is the Principal of the Mossman State High School in Far North
Queensland.
Deborah is also an ordained Deacon in the Mossman/Port Douglas Anglican Church.
She is a founding member of ‘Pink in the Tropics’ Breast Cancer Support Group that
was established in 2009 for the Mossman/Port Douglas area. She has been involved
in community activities for many years including sporting clubs, the local ambulance
committee, Parents and Citizens associations, and the Mossman and District Show
Society.
Ian Bunce graduated in Medicine from the University of Queensland in 1967. He
completed post graduate training and research at Princess Alexandra Hospital and
subsequently at St Bartholomew’s Hospital in London, returning to Australia in 1978. He
was appointed Director of Clinical Haematology and Haematology Pathology at The
Royal Brisbane Hospital, a position he held until 1988 when he resigned as a full-time
specialist to go into private practice with his colleagues Trevor Olsen and Paul Eliadis.
He remained a visiting Consultant Haematologist at the Royal Brisbane and Women’s
Hospital until his resignation in 1995.
With Ian Donaldson, Trevor Olsen and Beverley Mirolo, he worked to provide funding
for and to create the first Bone Marrow Transplant Unit in Queensland. In private
practice with his colleagues he founded private day hospitals now known as ICON with
centres across Australia. He joined the Leukaemia Foundation of Queensland Board
in 1979 and became Medical Advisor to the Foundation in succession to Trevor Olsen.
This Board position he held until 2003. He was the founding Medical Advisor to the
Leukaemia Foundation of Australia. He is a life member of the Leukaemia Foundation
of Queensland as well as its Mount Isa branch with which he had a close relationship
for many years.
Ian served as an Infantry officer in the Army Reserve for 24 years, becoming
Commanding Officer of Queensland University Regiment in 1981. He continues to work
in private practice and runs a farm in his spare time.
33
FINANCIAL OVERVIEW
OUR PEOPLE
OUR STAFF
As at June 30 2014, the Leukaemia Foundation of
Queensland employed 47 full-time, 18 permanent
part time and 11 casual staff. Our people are located
in offices along the east coast of Queensland
in Cairns, Townsville, Mackay, Bundaberg, the
Sunshine Coast, Brisbane, the Gold Coast, and west
towards Ipswich and Toowoomba.
At the end of March this year, our Central Office was
relocated to St Pauls Terrace at Fortitude Valley.
Our new office has certainly provided a welcoming,
colourful and spacious environment for our people
to work together to help provide our much needed
services.
DEVELOPING OUR PEOPLE
34
During the 2013 to 2014 year the Leukaemia
Foundation received a grant through the
Department of Transport and Main Roads for the
Travel ‘n’ Well project. Our staff and volunteers
have had the opportunity to access various
information sessions as part of this project. These
included a nutritionist to encourage a Healthy
Eating and Cooking Lifestyle (including exercise);
and a presentation by two Senior Constables from
Queensland Police on personal safety. This session
offered empowering information to help our people
feel safer when travelling on public transport, or
exercising and walking in their own suburbs or the
surrounding areas of our offices.
In May 2014 a Town Hall meeting was held at
Central Office in Brisbane where a total of 32 staff
received their awards and certificates for their
continued service of five years or more with the
Foundation.
FINANCIAL PERFORMANCE
SUMMARY
In the 2013-14 financial year we recorded a net
surplus (total income less the costs of fundraising,
administration, and fulfillment of our mission) of
$1,307,408.
The Foundation will continue to provide professional
development to our people by offering appropriate
training, mentoring and scholarship opportunities.
REVENUE
Our cash holdings in the 2013-14 financial year
decreased by $2.13 million primarily due to the
purchase of a building to house the Foundation’s
central office. In 2014 our property, plant and
equipment value increased to $32,077,622 which
reflects the investment in this property.
LOOKING AHEAD
The Leukaemia Foundation has submitted an
application to become a Temporary Business
Entry Standard Business Sponsor through the
Department of Immigration and Border Protection.
This will enable the Foundation to attract skilled
and experienced Overseas Employees with a 457
working visa that will further enhance our current
workforce.
The overall success of the people objective within
the strategic plan will be enhanced by the explicit
support and assistance of a dedicated strategic and
tactical Human Resource focus. With this in mind,
in the latter half of the year, an external audit will
be done on our current Human Resource practices
across the employment lifecycle benchmarked
against current best practice and legislative
minimum requirements which will identify areas of
improvement and actions to create success.
The total revenue generated by fundraising this year
was $9,393,065. This is a $1,518,859 decrease on
last year. This can be attributed largely to decreased
fundraising totals for the Doorknock Appeal and
World’s Greatest Shave.
EXPENDITURE
The total expenditure for Support Services in
2012-13 was $5,023,010 which was an increase on
the previous year’s figure of $4,844,893. This was
primarily due to increased services on the Gold
Coast and the introduction of new support programs
such as Fit to Thrive.
Our total research investment in 2013-14 was
$1,600,829 which was a 35.7% increase on the
previous year’s figure of $1,179,049.
INCOME SOURCE
50% Events
24% Accommodation and support
9% Bequests and legacies
8% Donated income
4% Community fundraising
3% Interest
2% Branches
THE FUTURE
The cash balance will enable the Foundation to
create a sustainable strategy in terms of further
accommodation facilities and blood cancer
research. The 2014 surplus and continued growth
in net assets is testament to the dedication of our
Board, management, staff, supporters, members and
volunteers.
One of the objectives of the new strategic plan was
an increased commitment to research and saving
lives. As a result the Foundation intends to increase
research funding to $2 million per year by 2017.
BANK: COMMONWEALTH BANK OF AUSTRALIA
AUDITORS: ERNST & YOUNG
LAWYERS: MCCULLOUGH ROBERTSON
RESEARCH EXPENDITURE
37% Leukaemia Foundation
Research Unit
17.5% Tissue Bank
14% Other (including amortisation
of research unit)
12.5% Psychosocial Research
10% PhD Scholarships
9% Grants-in-aid
SUPPORT SERVICES
EXPENDITURE
56% Village accommodation
28% Counselling operations
13% Motel accommodation
2% Direct financial support
2% Transport
35
STATEMENT OF FINANCIAL POSITION
HOW YOU CAN HELP
AS AT 30 JUNE 2014
DONATE
ASSETS
2014
2013
Cash and cash equivalents
13,743,248
15,849,661
Trade and other receivables
396,987
348,166
CURRENT ASSETS
Other assets
64,327
243,586
TOTAL CURRENT ASSETS
14,204,562
16,441,413
VOLUNTEER
A one-off or regular donation allows us to continue
to offer free support services to all Queenslanders
such as financial and practical assistance, education,
counselling and accommodation, as well as
investing in research. Large or small, your donations
make a difference.
GIFT IN WILL
NON-CURRENT ASSETS
Other assets
822,711
-
Intangibles
2,499,463
2,742,543
Property, plant and equipment
32,077,622
28,493,585
TOTAL NON-CURRENT ASSETS
35,399,796
31,236,128
49,604,358
47,677,541
TOTAL ASSETS
36
LIABILITIES
CURRENT LIABILITIES
Trade and other payables
1,019,405
457,386
Provisions
380,926
330,028
TOTAL CURRENT LIABILITIES
1,400,331
787,414
Provisions
105,398
98,906
TOTAL NON CURRENT LIABILITIES
105,398
98,906
TOTAL LIABILITIES
1,505,729
886,320
NET ASSETS
48,098,629
46,791,221
48,098,629
46,791,221
48,098,629
46,791,221
After taking care of your loved ones, a gift in your
Will is a direct and valuable way of contributing to
the long-term financial strength of the Foundation.
FUNDRAISE
We run many local and state-wide fundraising
events such as World’s Greatest Shave, which you
can get involved in. Why not join a sunset walk for
Light the Night and raise funds and awareness for
those living with blood cancers.
Volunteers are a crucial part of our success – from
driving patients to and from treatment, maintaining
our accommodation centres or providing
administration support.
PARTNER WITH US
Find out how your organisation can share in our
achievements. There are many ways we can work
together to create a great future for blood cancer
patients – from a single fundraising event, to
workplace giving or a multi-tiered program.
GIVE BLOOD, MARROW AND
TISSUE
Many people with blood cancers need blood
products regularly to sustain them. Bone marrow
(stem cell) transplants can cure some blood cancers
and tissue samples can help our researchers find a
cure. Visit www.donateblood.com.au,
www.abmdr.org.au and
www.allg.org.au/tissue-bank.html to find out
more.
NON CURRENT LIABILITIES
EQUITY
Retained surplus
TOTAL EQUITY
37
38
GPO BOX 9954,
Brisbane QLD 4000
213-217 St Pauls Terrace,
Fortitude Valley QLD 4006
FREECALL 1800 620 420
leukaemiaqld.org.au

chief executive officer - Leukaemia Foundation of Queensland

Transcription

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