matt`s journey of courage to london and back

July 2012
About us
The Leukaemia Foundation
is the only national not-forprofit organisation dedicated
to the care and cure of
patients and families living
with leukaemias, lymphomas,
myeloma and related blood
disorders.
Matt’s journey of courage to
london and back
We invest millions of dollars
in the work of Australia’s
leading researchers to
develop better treatments
and cures and provide free
services to support patients
and their families.
We receive no ongoing
government funding. We
rely on the generosity of the
community and corporate
sector to further our Vision to
Cure and Mission to Care.
Matt Conti (third from left) and fellow runners, from left, Marie Johnson, Rae Powys, Clem Chan, Steve Biddle,
Ian Sackett and Adrian Ng raised almost $100,000 for the Leukaemia Foundation in this year’s London
Marathon challenge. Tina Noutsos and Lorry Senesi (not pictured) also contributed to this amazing total.
As Western Australia’s Matt Conti crossed
the finish line of the 2012 London Marathon,
he describes the moment as one of immense
physical pain right throughout his body,
mixed with “pure elation”.
What makes Matt’s achievement even more
remarkable is that this time two years ago,
he was diagnosed with stage 3 Hodgkin
lymphoma.
Matt (23) was one of 37,500 runners who
competed in the world’s largest fundraising
event, the Virgin London Marathon, in April.
Among the pack were 10 runners representing
the Leukaemia Foundation, who together raised
almost $100,000 to help us support Australians
with blood cancer.
Matt raised almost $22,500 – an incredible
achievement – and managed to jog the entire
42 kilometres, completing the prestigious
marathon in four hours and 27 minutes.
“I will definitely take that time for my first
marathon,” he says with a satisfied grin.
“Crossing the finishing line, I was very proud of
my achievement. My whole body was aching
and I was in so much pain, but I couldn’t wipe
the smile off my face.”
In June 2010, Matt had just finished university
where he had been studying to become an
exercise physiologist. He had just started a
new job and he and his girlfriend, Janelle,
had been planning a long-awaited trip to the
United States.
But their plans were interrupted.
Continued on page 3...
In this issue
Holden employees go above and beyond
Pg 2
Working with GPs to manage lymphoma
Pg 2
Thanks Australia for our record $18million!
Pg 4
Kokoda challenge in Michael’s sights
Pg 5
Corey’s Cruise for a Cure on its way
Pg 8
New WA accommodation opens
Pg 9
KB004 blood cancer drug trial underway
Pg 10
A look at one of our PhD scholar’s vital work Pg 11
Holden employees go above and beyond
The Leukaemia Foundation is extremely
grateful to Holden for its ongoing
support of the Foundation over and
above its sponsorship of our national
Patient Transport Scheme.
In May, Holden facilitated an amazing
morning tea involving more than
500 of their employees from the Port
Melbourne Head Office.
Employees were asked to bring along
homemade treats for their department
teams to enjoy. The food on offer was
outstanding, “looking more like a
scene out of Master Chef”, one guest
remarked.
Holden hosted a staff morning tea recently, with special invited guests including V8
Supercar driver, Garth Tander, and his fellow Leukaemia Foundation volunteer drivers.
Some of the Leukaemia Foundation volunteer patient
transport drivers were invited to the event and were made to
feel extremely welcome. As well as enjoying all the fantastic
food on offer, they were delighted meet Holden V8 supercar
driver, Garth Tander, himself a volunteer driver. The event raised more than $1800, which was truly an
incredible effort. Thank you Holden!
reporting excellence
recognised – again the foundation goes
greener
The Leukaemia Foundation is celebrating recognition as
one of 10 finalists in the revenue $5m to $30m category
in the 2012 PwC Transparency Awards announced in
Sydney recently – for the second year running.
The Leukaemia Foundation may be well known for our
strong social conscience, but now we are out to show we
have a keen environmental conscience as well.
“We are proud to be named a finalist in the PwC
Transparency Awards for the second consecutive year,”
said Peter Cox, CEO of the Leukaemia Foundation of
Australia.
“The Australian public rightly expects all charities to be
accountable – not just financially. Our submission this
year included volunteer development and recognition,
environmental sustainability and more comprehensive
corporate governance disclosure. “We are committed to
effective stewardship of resources entrusted to us, and
communicating this to stakeholders.”
As part of a new National Environmental Sustainability
Policy, a ‘Green Team’ has been formed to champion the
implementation of various sustainable initiatives, ranging
from recycling waste more efficiently, to encouraging
staff to reduce their carbon emissions by turning off office
equipment at night.
The green team are staff volunteers from a range of
backgrounds who feel passionately about the environment
and want to make a difference. View our annual report at www.leukaemia.org.au.
bridgestone meets
shortfall of sleeves
diagnostic tool to
help treat lymphoma
Bridgestone Australia Pty Ltd has come to the Leukaemia
Foundation’s aid by financing 20,000 protective covers
for literature made available to people using our free
Patient Transport Program.
The Leukaemia Foundation is developing a diagnostic
tool to assist general practitioners around Australia with
better supporting their patients with lymphoma.
The Foundation’s vehicles are usually well stocked with
advisory materials about blood cancers for people using
the service, but recently we ran short of the plastic sleeves
used to keep the publications in. The brochures and
booklets must be kept sterile because often passengers
have compromised immune systems and are susceptible to
infections. Encasing the literature in plastic also means it
can be wiped down easily with antiseptic.
The resource, entitled ‘Watch and Wait – Management
of Indolent non-Hodgkin Lymphomas’, will be issued
in the lead up to World Lymphoma Awareness Day on
September 15 this year to assist GPs in the management
of indolent non-Hodgkin lymphomas.
Did you know?
In 2010-11 we provided 13‚864 nights of free ‘home away from
home’ accommodation to 725 families from regional areas who
needed to relocate closer to hospital during their treatment.
PAGE 2
Bridgestone’s contribution to funding the extra covers will
enable the Foundation to continue providing our materials
to the almost 3000 families we will assist with transport to
and from hospital this year.
matt’s journey of courage to london & back
Continued from page 1...
“About a week before we were to fly out for the US, I found
a lump in my neck,” said Matt.
“I saw the doctor and a chest x-ray revealed more lumps
in my chest. After that I had a cat scan and was told that
I wouldn’t be going on holiday. Things then moved very
quickly.”
From there, Matt said he just had to go through treatment
and “hope for the best”.
He endured six months of chemotherapy, finishing this
stage of his treatment two weeks before Christmas 2010. In
mid-January of 2011 he began radiation treatment, which
continued until the end
of February that year.
He was given the allclear in June 2011.
Matt is grateful for the
contact he had with the
Foundation at the height
of him being unwell.
“I received quite a few
visits and calls during
treatment from the
Leukaemia Foundation
to see if there was
anything
that
we
needed and I always
got letters about the
education sessions that
might help me,” he said.
To prepare physically, he would run as often and as hard as
his body would allow. He ensured he listened to his body
throughout his training and forgave himself if he was unable
to stick to a strict training regime.
“My lungs were a little bit burned from the radiation
treatment, so deep breathing would affect them,” he said.
“My endurance had been taken away a bit too. Even if I felt I
was capable of more, I had to be mindful of those things.”
Eight weeks out from the starting line, Matt had a setback
when he suffered a serious knee injury. The unexpected
hurdle resulted in him seeing a sports doctor in Perth, who
also insisted that he see a colleague in London upon arrival.
“I was a little bit worried
about how my body
would hold up,” said
Matt. “But I just wanted
to get over there and get
it done. I thought ‘even
if I have to crawl across
the line, I’m going to do
it that way’.”
Fortunately, the knee
proved as resilient as
Matt.
Having met his goals
for the marathon, Matt
is humble about the
tremendous amount
of money he raised.
He attributes his
fundraising success to
A smile from Matt as he spots the Aussie fans on the sidelines.
“Going through
the generosity of his
something like we
circle of family and friends and the fact that contributing to
did is very stressful, so it’s important that the Leukaemia
the Foundation’s cause was finally a tangible way in which
Foundation is there providing help for people.”
they could support Matt, after feeling so helpless during his
illness.
As Matt slowly recovered and eased back into life again, he
was convinced by his brother, an iron man competitor, to
Matt says the fundraising was a “combined family effort”,
consider training for the 14 kilometre HBF Run for a Reason.
which included his Mum, an artist, and his uncle and aunt,
Matt had always been fairly active throughout life before his
diagnosis, so he thought: “I can give that a shot”.
Matt completed the run. It signified a tremendous personal
milestone and was the beginning of an exciting new chapter
in his life. Later in 2011, he successfully ran in Perth’s City
to Surf. Exactly 12 months on from his diagnosis, Matt and
Janelle travelled to the US and enjoyed the six-week holiday
they had planned to do the year before.
Around this time, Matt’s Mum, Jenny, spotted an article in
The Carer about the upcoming London Marathon fundraiser
and suggested that Matt “think about it”.
“Ever since I had been given the all-clear, I wanted to give
back to the Leukaemia Foundation in some way. After
reading the story, I thought: ‘this event is tailor-made for me
– it’s perfect’.”
Having made the decision to run in London, Matt said he
received an overwhelming amount of support.
who are members of the East Fremantle Bowling Club. Two
major events that contributed to his fundraising were an
art auction of exclusive pieces by his mother at the Conti’s
family home, as well as a dinner and lawn bowls night for
about 200 people.
Matt will turn 24 this year and is now dreaming of running
the 2013 New York Marathon.
CEO of the Leukaemia Foundation of Australia, Peter
Cox, said the fact that Matt had run the London Marathon
after surviving blood cancer was “a simply extraordinary
achievement”.
He also paid tribute to everyone involved with the
“exponential” fundraising effort for the event this year.
Want to be part of this amazing event in 2013? The Leukaemia Foundation has limited spaces still
available for next year’s challenge. Please email
[email protected] for more information.
PAGE 3
Thank you for our record-breaking
$18million australia!
The Leukaemia Foundation’s biggest fundraising
event, World’s Greatest Shave, has raised more
than $18million nationally – the most ever in a
single campaign year.
“We are absolutely thrilled with the success of the
World’s Greatest Shave this year,” said Peter Cox,
CEO of the Leukaemia Foundation of Australia.
“This is a record year and the support from
Australians has been overwhelming. People of all
ages and walks of life shaved and coloured their
hair to raise funds, showing a spirit of fun and
concern for the 50,000 people living with blood
cancer in our country today.
“Money raised will fund cutting-edge leukaemia,
lymphoma and myeloma research and free services to
support people with blood cancer, and their families.
“Thanks to the staggering amount of fundraising
this year, we’ll be able to keep our services free and
help more people than ever before,” said Mr Cox.
Thousands of Australians will turn to the Leukaemia
Foundation in 2012.
World’s Greatest Shave is still the biggest contributor of
funds to the Leukaemia Foundation’s research investment
each year, as well as providing for more than half of the
operational costs behind our free support services.
This year, more than 11,500 Australians are expected to
be diagnosed with leukaemia, lymphoma, myeloma or a
related blood disorder, equivalent to 31 people each day.
The Leukaemia Foundation invests millions of dollars each
year in research to improve treatments and find cures and
provides free services to support thousands of Australians
and their families.
Since its inception in 1998, World’s Greatest Shave has raised
almost $140 million and last year the Foundation’s flagship
fundraising event came out on top at the 2011 Fundraising
Institute of Australia (FIA) National Awards for Excellence.
For news on our top fundraisers from World’s Greatest
Shave this year, go to www.worldsgreatestshave.com.
Volunteers the backbone of the foundation
The Leukaemia Foundation
paid tribute to the hundreds of
volunteers who are the backbone
of the organisation during National
Volunteer Week recently.
“In 2010-11, our dedicated team
of volunteers donated over 46,400
hours of support, equivalent to almost
$1million in dollar terms alone.”
Foundation of Australia last financial
year including:
• 1944 hours of administration
work, such as reception, data entry
and mail preparation
• 7996 hours supporting fundraising
events like Light the Night
• 33,772 hours of transport
support, drivers who provide a
friendly face to help reduce the
anxiety of treatment for patients
and reduce the impact on carers.
• 978 hours of professional advice
through our Medical Advisory and
National Research Program Grant
Review committees
In the last financial year, volunteers
engaged in a wide range of activities
to extend the work of the Leukaemia
“Many volunteers come to us when
their own life is touched by blood
cancer, but some come through
“From school students to corporate
teams, retirees to medical and health
professionals, every aspect of the
Foundation’s work is made better
by our dedicated volunteers,” said
Peter Cox, Leukaemia Foundation of
Australia CEO.
PAGE 4
existing volunteers because of positive
word-of-mouth,” said Mr Cox. “Our
volunteers are like family. They make
our work more efficient and can
be our eyes and ears in our stead.
For example, volunteers who drive
patients to and from treatment can let
us know if they feel someone might
need a little extra support.
“It wouldn’t be possible to support people
with blood cancer in the way that we do
without our volunteers. And frankly, we
wouldn’t have it any other way.”
If you would like to learn more
about becoming a volunteer, please
call 1800 620 420. (Turn to page 6
to read the story of 80 year-old
Sydney volunteer, Syd Grolman.)
Taking on kokoda with personal purpose
When Sydney’s Michael Loveday joins the 70th
Anniversary Kokoda Challenge for the Leukaemia
Foundation later this year, he will make each grueling
step with a sense of purpose and motivation that could
not be any dearer to his heart.
Michael’s wife, Alex, was diagnosed with chronic myeloid
leukaemia (CML) three years ago, two days after her 35th
birthday. At the time the couple’s miracle
daughter, Charlotte – their first child –
was just 14 months-old and Michael’s
biggest fear was that he might be left
with a young baby, without a wife.
The diagnosis left Michael and Alex
feeling “shell shocked”. Initially, they
had thought that Alex’s severe tiredness
was the result of the sleep deprivation
and physical fatigue that comes with
caring for a baby.
Occasionally she will experience nausea as a side effect of
the medication, but says this was worst during her first year
of treatment.
Michael’s decision to sign up for the 70th Anniversary
Kokoda Challenge (25 Oct – 5 Nov, 2012) is personally
significant given Alex’s health challenges, as well as
historically symbolic for him and his wife – Alex and
Michael spent their honeymoon hiking
through Machu Picchu in Peru.
Michael, a service manager at the Sydney
operations of a UK telco company, says he is
excited about tackling Kokoda, not only due
to the trail’s historical significance and during
the 70th anniversary year, but for a cause that
is “so very close to me”.
“Supporting a loved one with this disease
can be difficult. For me, I’ve struggled
to know how to, other than through the
practical means of helping day to day,”
said Michael. “I tend to come at things in a
practical way, which is not always helpful
when facing something as life changing and
emotionally draining as this.
“I was a first-time Mum and I was
struggling with the challenges of that –
the tiredness of it all,” said Alex. “But I
couldn’t work out why I was struggling Alex, Charlotte and Michael Loveday.
so much more than my friends in my
“It’s time for me to do something that can really show Alex
mothers’ group.
that I’m sharing the journey with her.”
“Luckily my doctor decided to pursue my concerns with
Alex is proud of her husband, who she knows will be
a blood test and I had an early diagnosis. Mine was
propelled to succeed in all aspects of the 70th Anniversary
the earliest CML diagnosis that my haematologist had
Kokoda Challenge by the emotions tied to their own blood
seen detected and it meant that I could get started with
cancer experience.
treatment straight away.
“This is his way of doing something tangible to help others
“I had thought something was wrong, but I never expected
with leukaemia,” she said. “He is so driven. If he knows he is
for it to be that (leukaemia).”
doing it for a reason, he won’t even consider not making it.”
Alex describes her CML now as “manageable”. She feels
blessed that CML now has a more positive outlook for
people who are diagnosed with it than in the past. She has
now been on the drug Glivec® for three years and is in
remission. She still sees her haematologist every six months
and has quarterly blood tests.
Places are still available for this life-changing opportunity
to trek the legendary Kokoda Track on the 70th
anniversary of the valiant battle fought by Australian
soldiers there. For more information please go to:
www.inspiredadventures.com.au/LFkokoda; email
[email protected]; or call 1300 905 188.
The Leukaemia Foundation hosted a range of awarenessraising activities and education events for National
Myeloma Day recently.
The day also saw special Myeloma Aware badges sold, with
proceeds benefitting the Leukaemia Foundation’s research
program and free support services. Another focus of the day
was encouraging people to increase awareness of myeloma
by telling at least one other person about the disease.
“Living stronger” on national myeloma day
National Myeloma Day (9 May) had three objectives:
• to promote myeloma awareness among the public;
• to bring together people with myeloma for support; and
• to focus on how people with myeloma can live stronger.
‘Living Stronger with Myeloma’ was the theme of major
events in Sydney, Melbourne and Adelaide that were
hosted in partnership with the Myeloma Foundation of
Australia. The theme focused on ways in which a person
could increase their send of wellbeing, with topics
including exercise, meditation, pain management and more.
More than 1400 Australians are expected to be diagnosed
with myeloma this year – equivalent to four people every
day. Eighty per cent of people diagnosed with myeloma
are over the age of 60 and it is uncommon in people under
40. There is currently no cure for myeloma. Treatment
to control the growth of the disease can involve targeted
therapies, chemotherapy, often in combination with steroid
therapy, radiotherapy or maintenance therapy and stem cell
transplants.
PAGE 5
NSW/ACT
Slowing down not on syd’s radar
When Syd Grolman turned 70, he
had retired from work and wasn’t
interested in sitting around twiddling
his thumbs for the rest of his life.
conducts two men’s forums at
Montefiore aged care homes
where he regularly plays chess
with a 92 year-old Holocaust
survivor, allowing him to have
someone to talk to.
Already a regular blood donor and local
Rotary Club member, he was looking
for more volunteering opportunities.
Leukaemia Foundation CEO for NSW
& ACT at the time, Peter Schell, was a
resident in the building where Syd lived,
and suggested he come on board as a
volunteer driver for the Foundation’s
patient courtesy transport program.
And so Syd began his volunteering
with the Leukaemia Foundation. He
celebrates his 80th birthday this month
and has been generously donating
his time for almost 10 years now. He
no longer drives patients to and from
treatment, but helps the Foundation’s
transport coordinator each Friday by
confirming the availability of other
drivers for the next week.
“During my time at the
Leukaemia Foundation I’ve driven
many patients – young children
to older people. We try not to get
too involved with them but when
you’re driving someone regularly,
they want to talk and it’s my job
to listen,” said Syd.
“One lady I used to drive each
week asked if I could stop at a
café so she could get a sandwich
for her lunch. When she came
back she had a sandwich for me
too. The patients are so grateful,
they really are. It’s wonderful.
“If you want to do good in
this world, volunteering is a
wonderful way to start. It’s very
rewarding. The only way you’ll get me to stop is if I’m in a
wheelchair and physically unable to go on. I’ll be around
for a while still.”
Syd Grolman: “If you want to do good in this
world, volunteering is a wonderful way to start.”
“It’s been an absolute pleasure for me to
be associated with everyone at the Leukaemia Foundation
and to work for such a wonderful cause,” said Syd.
Syd doesn’t just volunteer with the Leukaemia Foundation.
He was the treasurer at Northbridge Rotary Club and is
still the treasurer for Sailability in Middle Harbour. He also
For more information about volunteering with the
Leukaemia Foundation please call 1800 620 420.
‘lifecycle’ support for canberra complex
The NSW Chief Minister, Katy Gallagher,
officiated over the launch of ‘Lifecycle’ recently,
a major fundraising initiative for the Leukaemia
Foundation in the ACT and surrounding areas of
regional NSW.
Lifecycle is a combined awareness and fundraising
campaign which aims to increase community
awareness of leukaemia and other blood disorders,
as well as raise much-needed capital towards a
purpose-built ‘home away from home’ for blood
cancer patients and families.
The new facility will provide live-in accommodation
for families from regional areas of the ACT and
NSW who are required to travel to Canberra for
blood cancer treatment. The new complex also will
provide working accommodation for Leukaemia
Foundation staff.
The Lifecycle awareness campaign includes presentations
to local ACT schools, as well as in regional towns whose
residents will ultimately utilise the new facility.
The centre piece of Lifecycle’s fundraising component will
be a 48-hour cycling event around Lake Burley Griffin in
September this year. There will be an active ‘event window’
PAGE 6
from 6pm on Thursday, 13 September, to 6pm on Saturday,
15 September, within which individual riders or teams can
choose when they would like to ride.
Further information is available at the Lifecycle website
www.life-cycle.org.au. The website is now open for
registrations for the schools awareness campaign, the
cycling event, volunteering and sponsorship.
SA/NT
South aussies to ‘go the distance’ for research
L to R: Chris McDermott (Little Heroes Foundation), Simon Matthias (Leukaemia Foundation), Amber Halliday (Go the Distance ambassador),
Deb Heithersay (Flinders Medical Centre Foundation) and Associate/Professor Matt Worthley (board member, Heart Foundation).
Four leading South Australian charities including the
Leukaemia Foundation are joining forces to ‘go the
distance’ for cancer research with a major community
fundraising challenge this October.
Participants are invited to fundraise by choosing their
physical challenge – either a walk, run, or ride.
Go the Distance is a unique partnership between the
Leukaemia Foundation, the Flinders Medical Centre
Foundation, Heart Foundation and Little Heroes
Foundation, which aims to raise more than $2 million
towards finding treatment and cures for heart disease and
cancers including leukaemias, lymphomas and myeloma.
“When you think about it, that’s just a small amount to
raise each month, particularly if you get your family and
friends to support your challenge,” said Simon Matthias,
Leukaemia Foundation SA General Manager.
‘Challengers’ qualify by raising at least $1500 leading up to
the event, which is open to participants of all ages.
The challenge represents the first time that the four
organisations have united for a common cause.
“You can do it for someone close to you who has been
touched by cancer or heart disease – your dad, mum,
sister, brother, friend or work colleague – or you can
simply do it for the cause.”
Starting and finishing at West Beach, the Go the Distance
challenge will take place on Sunday, 28 October.
Register for Go the Distance at www.gothedistance.org.
New cbd home for our sa team
The Leukaemia Foundation’s South
Australian team has moved from its home
of four years in the suburb of Findon, to
a vibrant new location in the heart of
Adelaide’s city centre.
Formerly housing a health insurance
company, the character Pirie Street
building features a large glass street
frontage, enabling us to maximise our
presence by displaying signage and
information about who we are and what
we do.
It is envisioned that the city location will
further boost the Foundation’s ability
to leverage donations and potential
sponsorships from surrounding businesses.
The premises will be a place for the
SA team to call home until the new SA
Patient Accommodation Village and office
complex at Northgate is completed.
Pictured are the Leukaemia Foundation’s Natalie Canova (left) and Deanna Castrachini
outside the new Adelaide CBD offices in Pirie Street.
PAGE 7
Be
insp ire d
vic/tas
Corey’s cruise for a cure on its way
A group of keen motorcyclists with a shared passion
for making a difference to the lives of people with
blood cancer has set off on an epic 10,000km journey
to honour the memory of a mate.
‘Corey’s Cruise for a Cure’ is a 10,000km motorcycle
ride around the eastern parts of Australia to raise funds
for the Leukaemia Foundation. The fundraiser has been
organised by Rory Jones, from Castlemaine in regional
Victoria, in memory of his step-brother Corey, who died
of acute lymphatic leukaemia (ALL) in June 2011.
“One of the things that Corey and I had in common was
that we were both avid motorcycle riders,” said Rory.
“We would often talk about bikes while he was going
through treatment.”
The cruise began in Melbourne on 1 July – just one day
after the first anniversary of Corey’s death. The team
set off from Seaford in south east Melbourne, which was
Corey’s final home with his long-time partner, Rachel.
From there, the group is following the eastern coast north
to Cairns.
Many members of Corey’s family, including his Dad, Mike (a
Honda rider) and Rory (on a Yamaha XT-660) are involved
in the trip, which will take in some of the most beautiful
parts of Australia covering an average of 500km per day.
The entire journey will take three weeks, with major
fundraising events at the beginning and end of the ride.
Corey grew up in Warragul and was School Captain at
Neerim District Secondary College. As a young boy his
passion was to be a pilot. It was with great pride that Corey
was accepted into Swinburne University to fulfil his lifelong
dream to be a commercial pilot.
In May 2010 Corey was diagnosed with leukaemia –
a diagnosis that was picked up as a result of Rachel
Top: Rory and Mike gear up for Corey’s
Cruise. Right: Corey’s passion in life was
to be a pilot and he also shared his
step-brother’s love of motorcycles.
convincing him to donate blood.
After being diagnosed, he was
sent to The Alfred Hospital
where he started chemotherapy
the following day.
“Throughout his journey, Corey
turned to the Leukaemia Foundation to find out more
information about his disease,” said Rory.
“We’re sure that Corey would be over the moon with
what we’re doing – he was campaigning for the Leukaemia
Foundation while he was still alive and he wanted people to
support the organisation because they do an amazing job.”
To follow the route and donate to Corey’s Cruise for a
Cure, visit www.coreyscruise.org.
AON volunteers roll up their sleeves
A team of volunteers from one
of the Foundation’s corporate
supporters, AON, came to
the rescue recently to help us
relocate the contents of two of
our ‘home away from home’
units in Melbourne.
the job was completed to
the highest standard. They
then facilitated the move
to the two new apartments
in coordination with
our Melbourne staff and
removalists.
The Leukaemia Foundation
apartments provide sought after
accommodation for patients
and their families who need to
relocate to Melbourne to be
closer to treatment hospitals.
“This was a huge task
and could not have been
completed without additional
voluntary help,” said
Stephanie Hechenberger,
General Manager (Vic-Tas) for
the Leukaemia Foundation.
AON volunteers recently
helped to pack up the
contents of two of our existing
apartments, with their effort
and attention to detail ensuring
PAGE 8
Our Accommodation Program Coordinator, Elizabeth
Hutton (centre), with Alexia (left) and Anna from AON.
“Thank you to everyone who
was involved in the move –
we simply couldn’t have done
it without you.”
WA
Foundation opens new wa accommodation
The Leukaemia Foundation has opened four newly
acquired units in Coolbellup to accommodate the
growing needs of people with blood cancer from
Western Australian regional areas.
The units have been renovated and furnished with funds
received from generous supporters Graham Kluck and
Christine Foster as well as David Flanagan, Managing
Director of Atlas Iron, who was the winner of the inaugural
Governor’s Award for Giving in 2011.
The accommodation is vital for people from regional areas
who are diagnosed with a blood cancer and are required
to relocate to Perth for treatment. As treatment can range
from months to several years, many patients require
accommodation close to the hospitals for months at a time.
“For those living in regional areas, it means leaving work,
school and family and relocating to Perth, adding to the
shock and emotional turmoil of the initial diagnosis,”
said Carolyn Turner, General Manager of the Leukaemia
Foundation in WA. “The Leukaemia Foundation is here to
assist these people by providing free accommodation while
they are in Perth.
From left: Governor Malcolm McCusker with David Flanagan,
Managing Director of Atlas Iron, who was the winner of the
inaugural Governor’s Award for Giving in 2011 and donated his
winnings to renovate the Leukaemia Foundation units.
“While it is fantastic that we have been able to obtain
four more units, more funding is still needed to meet the
growing demand for our accommodation facilities. Before
these units could even be opened, we had patients on a
waiting list to move in to them.”
The Leukaemia Foundation’s Coolbellup units provide a comfortable
‘home away from home’.
With the addition of the four new Coolbellup units,
the Leukaemia Foundation now has a total of 19
accommodation facilities in WA available for people with
blood cancer, their carers and families.
First lymphoma support group starts in wa
A new lymphoma support group in Port Kennedy takes
to 11 the number of different support groups offered by
the Leukaemia Foundation to people with blood cancer in
metropolitan and regional Western Australia.
The lymphoma support group also is the first disease
specific group that the Foundation has offered in WA and
reflects the national direction of the Leukaemia Foundation’s
support services.
The program has been designed to enable people with
lymphoma and their carers to access lymphoma specific
information. The group also allows people to receive
personalised support by meeting and sharing their journey
with others who have been through similar experiences.
“We are delighted to be able to offer this additional
service to lymphoma patients in this area,” said Carolyn
Turner, General Manager of the Leukaemia Foundation in
WA. “Based on a needs analysis
conducted across the state, we
identified that there was a demand
for a lymphoma support group in the
south metro and Peel region.
“We are committed to expanding
our patient services and look forward
to introducing more disease specific
support groups in the next financial
year.”
The new lymphoma support group
Carolyn Turner
will be set up in Port Kennedy to
cater for people living in the south metropolitan and Peel
region. There are six lymphoma support group meeting dates
scheduled for the remainder of 2012.
For more information please call 1800 620 420.
PAGE 9
Surprise find redraws
’map’ of blood cell
production
A study of the cells that respond to crises in the blood
system has yielded a few surprises, redrawing the ‘map’
of how blood cells are made in the body.
The finding, by researchers at Walter and Eliza Hall
Institute (Melbourne), could have wide-ranging
implications for understanding blood cancers and related
blood disorders, and help develop new ways of controlling
how blood and clotting cells are produced.
The research team, led by Dr Ashley Ng and Dr Maria
Kauppi from the institute’s Cancer and Haematology
division, investigated subsets of blood ‘progenitor’ cells
and the signals that cause them to expand and develop
into mature blood cells. Their results have been published
in the journal Proceedings of the National Academy of
Sciences of the United States of America.
Dr Ng describes blood progenitor cells as the ‘heavy lifters’
of the blood system.
“They are the targets for blood cell hormones, called
cytokines, which Professor Don Metcalf and colleagues
have shown to be critical for regulating blood cell
production,” Dr Ng said.
“In times of stress, such as bleeding, during infection or
after chemotherapy, it is really the progenitor cells that
respond by replacing lost or damaged blood cells.”
Dr Kauppi said the research team was particularly
interested in myeloid progenitor cells, which produce
megakaryocytes, a type of bone marrow cell that gives rise
to blood-clotting platelets.
“We used a suite of cell surface markers specific to these
progenitor cells that allowed us to isolate and characterise
the cells,” she said.
The researchers were surprised to find that progenitor cells
believed only to be able to produce megakaryocytes were
also able to develop into red blood cells.
“We clearly demonstrated that these mouse
megakaryocyte progenitor cells have the potential to
develop into either megakaryocytes or red blood cells
in response to cytokines such as thrombopoietin and
erythropoietin, which was quite unexpected,” Dr Ng said.
“In addition, we discovered that other progenitor
populations thought to really only make neutrophils and
monocytes (other immune cells), were capable of making
red blood cell and platelets really well. In effect, we will
have to redraw the map as to how red cells and platelets
are made in the bone marrow.”
Dr Kauppi said the researchers found they could regulate
whether the progenitor cell became a megakaryocyte or a
red blood cell by using different combinations of cytokines.
“Now we have properly identified the major cells and
determined how they respond to cytokine signals involved
in red blood cell and platelet production, the stage is set
PAGE 10
Light the Night 2012
Light the Night is coming up again this September,
with proceeds from this year’s event to be channelled
into Australia’s best blood cancer research projects.
It’s a focus that reflects our resolute Vision to Cure to invest in hope for a future free from blood cancer.
More details about Light the Night 2012 will be available
soon. To follow our plans visit www.lightthenight.org.au
or ‘like’ Light the Night on Facebook.
for understanding how these progenitors are affected in
health and disease,” she said.
“We can also better understand, for instance, how genetic
changes may lead to the development of certain blood diseases.”
Dr Ng said the findings would also help researchers discover
new ways in which the progenitor cells can be controlled.
“This research is the first step in the future development of
treatments for patients with blood diseases,” Dr Ng said.
“This may occur either by limiting blood cell production
when too many are being made, or stimulating blood
production when the blood system is compromised, such
as during cancer treatment or infection.”
Did you know?
Every $1 invested in our National Research Program generates
a further $5.20 in Australian blood cancer research from
Government and other funding bodies. That’s a 520% return! New blood cancer drug trial underway
Early results from a clinical trial being led by Australian
researchers could translate into a new therapy to treat
people with blood cancers and related blood disorders.
Researchers are excited by their initial findings from the trial,
which is underway at The Alfred Hospital in Melbourne.
Dr Andrew Wei is leading the clinical team, which has
treated the first two people in Australia with the new drug
called ‘KB004’, a biological therapy that is designed to
destroy leukaemic cells, leukaemic stem cells, as well as
newly-forming tumour blood vessels.
“The target of KB004 seems to be present almost
exclusively on cancer cells and the safety data to date has
been encouraging,” said Dr Wei.
Cancer Research, who developed an early version of the
anti-EphA3 antibody as a potential anti-cancer drug.
The KB004 antibody targets a particular protein known as
EphA3, which is found in cancer cells.
The trial is part of an international Phase 1 trial and
has been organised and sponsored by KaloBios
Pharmaceuticals, a US-based privately held Biotechnology
Company. The study is available to people with blood
cancers and related blood disorders, including acute
myeloid leukaemia, acute lymphocytic leukaemia, chronic
myeloid leukaemia, myelodysplastic syndromes and
myeloproliferative disorders.
Dr Andrew Wei says the Phase I trial is designed to test
the safety of KB004 and to see how well it is tolerated by
people receiving this innovative new drug. Phase I will also
show the efficacy of KB004 in treating leukaemia and its
potential to improve the prognosis.
“We are very excited to see progression of KB004 into
the clinical trial phase and, in particular, to be part of the
multi-centre trial that allows us to treat leukaemia patients
at the Alfred Hospital with the new investigational therapy,”
said A/Prof Lackmann when the trial opened in Melbourne.
The trial has reached clinical testing due to Australian
research led by Associate Professor Martin Lackmann
from Monash University. This follows previous work by
Professors Andrew Boyd from the Queensland Institute
of Medical Research (QIMR), who discovered the EphA3
protein, and Andrew Scott from the Ludwig Institute for
The current trial is recruiting only people with leukaemia,
however the target protein EphA3 may benefit people with
other cancers in the future.
KB004 is still in the investigational stages and Dr Wei and
his colleagues are “enthusiastic that this trial may help
translate the exciting preclinical activity findings into a
potential new therapy for people with leukaemia.”
* Professor Andrew Boyd is the Leukaemia Foundation Professor
of Experimental Haematology at the University of Queensland,
and a Senior Professorial Research Fellow of the QIMR.
Phd study on young cancer survivors
Understanding how young
cancer survivors create
a sense of identity and
meaning in life in adulthood
is the aim of a unique threeyear study being undertaken
by a Leukaemia Foundation
PhD scholarship recipient.
The study by Danielle Tindle
(left), a researcher at the
Queensland University of
Technology (QUT), will
involve participants from
three countries – Australia, England and the United
States. The project focuses on cancer survivors who were
diagnosed between the ages of 15 and 29.
Danielle, who is a lymphoma survivor herself, says her
study aims to help address “critical gaps in knowledge
about this growing cancer survivor population and how to
best provide age-appropriate services”.
“This research is unique in that it will explore issues
associated with finding meaning in life, how this is
influenced by the cancer experience, and what this means
for quality of life for these young people in adulthood,”
said Danielle.
“Internationally, there has recently been greater recognition
of the importance of supportive care services for
adolescents and young adults, especially during their
treatment experience. However, little is known about
the effects of cancer and treatment on a young person’s
life beyond the initial treatment phase. Furthermore,
the broader research on cancer survivorship focuses
predominantly on health needs and/or post treatment
effects alone.”
Danielle hopes that the future outcomes of her research
will greatly contribute to improving the lives of young
people who have survived cancer around the world.
The Leukaemia Foundation has committed $40,000 per
year over three years to supporting this project.
PAGE 11
Show us you’re U.G.L.Y. Australia!
The Leukaemia Foundation’s most quirky fundraiser is
just a few months away, with registrations now open for
the 2012 U.G.L.Y. Bartender of the Year.
Now in its fifth year, U.G.L.Y. stands for ‘Understanding,
Generous, Likeable You’ and plays on the Australian love
of contradiction. It’s a lighthearted way to raise serious
funds to help people with blood cancer.
During the month of October, hundreds of bartenders
across the country will host events to raise money for the
Leukaemia Foundation’s accommodation support facilities.
Every 46 minutes, an Australian is diagnosed with
leukaemia, lymphoma and myeloma. If they live in the
country, it can mean leaving family, friends and work to
relocate to the city for treatment.
We offer families a fully-furnished place to call home in
the city for as long as they need it. Our accommodation is
provided free of charge to help families stay together at a
time when they need each other more than ever.
Every $80 raised pays for a regional family to stay for one
night in our accommodation.
Participating bartenders are wearing t-shirts saying ‘I’m U.G.L.Y. – I
need help!’
For more information on U.G.L.Y. Bartender of the Year
and to sign up, go to www.uglybartender.com or follow
our U.G.L.Y. Bartender page on Facebook.
Car rally to revive ‘glory days‘ of bathurst All proceeds from the event will be directed to the
Leukaemia Foundation’s new $9.5million South Australian
Patient Village to be built in Adelaide’s north east.
The village will be a ‘home away from home’ for regional
people with blood cancer and their families who have no
other option than to relocate to Adelaide for life-saving
treatment.
A fun intra-state car rally with scenes (and fumes)
reminiscent of the Bathurst glory days is set to have
muscle car enthusiasts lining up to start their engines.
The inaugural Aussie Muscle Car Run is an exciting new
motoring event that will see approximately 300 people
travelling in 100 Australian “muscle cars” to all corners of
South Australia in a leisurely paced motoring run.
Organised by the Leukaemia Foundation in association
with the Falcon GT Club of South Australia, the Run will
commence in Adelaide on Monday, 12 November and
finish in Adelaide on Sunday, 18 November. Over the
six days it will weave its way from the South East, to the
Riverland, the Iron Triangle, Eyre Peninsula, the Copper
Coast and through other points along the way.
The Aussie Muscle Car Run is open to cars that were
manufactured in Australia from 1965 to 1977, including
various models of Ford, Holden and Chrysler. Entrants
will need to raise at least $2500 and pay an entrance fee.
In return, food, accommodation and back up mechanical
facilities will be provided.
The Run will take entrants on nearly 3000 kilometres of
bitumen roads around a broad sweep of South Australian
country towns to enjoy the hospitality, the scenery,
mixing with like-minded enthusiasts and, of course, “the
sheer pleasure of the drive”, says organiser, Kevin May.
Further information is available by calling Rose Senesi at
the Leukaemia Foundation on (08) 8100 9475, or Kevin May
on 0419 804 439, or visit www.aussiemusclecarrun.com.
The Carer welcomes feedback from our readers.
If you have a comment on a particular article or a suggestion for a story,
please email [email protected] or call 1800 620 420.
Leukaemia Foundation
Freecall: 1800 620 420
Email: [email protected]
Mail: GPO Box 9954 in your capital city
Web site: www.leukaemia.org.au
PAGE 12