Newsletter
AUTUMN 2016
Thank you Australia!
More than 7,000 Australians
united to take action against
melanoma and raise funds for
a cure during Melanoma March
2016. With over $750,000
raised from 24 marches, this
was our biggest and most
successful year to date…
so thank you for your support!
With the melanoma community of survivors
and loved ones united together, Melanoma
March was an emotional but hope-filled
time for many.
“We are never prepared for the emotion of
the morning – the courage, generosity and
tenacity of those who share with us how
melanoma has affected them, their family
and friends,” says Bribie Island committee
member, Joy Leishman.
We could not have reached this
pinnacle without the contribution of
our wonderful volunteers, sponsors,
partners, ambassadors, committee
members, fundraisers, researchers,
MIA staff and of all of our melanoma
marchers around Australia.
“It takes an incredible amount of work
behind the scenes to ensure events go
to plan,” says MIA’s CEO Carole Renouf.
“We couldn’t do it without our wonderful
supporters and volunteers. It was a real
team effort and it was fantastic to see so
many people involved.
Louise White and Jess Van Zeil open
the Melbourne March.
“I’d also like to thank our patients who
bravely shared their stories with media and
spoke at events. I was moved and inspired
to hear about their experiences. They are
the reason we do what we do.”
and pay tribute to those lost to melanoma.
The event is now an annual national initiative
that has raised more than $2 million to date
for life-saving melanoma research.
Funds from this year’s March will be used
to launch an ambitious new project that will
support the best possible care for melanoma
patients around Australia by linking
melanoma treatment centres together to
share their data on patient outcomes.
“There are many tears and hugs, and a
sense that as dark as moments can be,
there will be a better tomorrow. The
melanoma survivors and their families
know the only way forward is research
and research needs funds.”
Melanoma March began only five years ago as
a community walk in Manly to raise awareness
Team Ricky at the Picton
Melanoma March.
The emotional balloon release
in Adelaide.
Our sincerest thanks to our
partners Australian Melanoma
Research Foundation, melanomaWA
and Skin & Cancer Foundation Inc.
Thank you also to our campaign
sponsors Men’s Health, Women’s
Health and Prevention Australia
magazines, Toyota, Grant Broadcasters,
Ricky Richards and Cancer Institute
NSW for their support with this
year’s campaign.
Placing gerberas in memory of
loved ones in Brisbane.
Meet our newest Ambassador
Kay Van Norton Poche, wife
of MIA’s benefactor Greg
Poche, was recently invited to
become an MIA Ambassador.
Although initially surprised by
the invitation, given that she is
not a prominent public figure,
Kay was very happy to step
into her new role.
“I’m not a public figure and have never
wished to be, but I am a caring and
passionate supporter of all melanoma
patients and those who have lost loved
ones to melanoma, and all who are working
so hard in the research and treatment
necessary to wipe this from the face of
the earth,” she says.
“My husband, Greg, put his faith in
the talent and ability of the dedicated
professors, doctors and researchers working
toward a cure without adequate financial
support, and put his money where his
mouth was and continues to do so each
year. It has been obvious to both of us that
putting philanthropic dollars to good use
with good people works.”
Kay is keen to use her role to inform
and inspire others in the fight against
melanoma. “This is my role as MIA
Ambassador, a role of love for each of
you battling today and tomorrow. We
stand together to change our future and
give our children and their children to
come, a bright and healthy future.”
MIA Ambassador,
Kay Van Norton Poche.
Donna’s big
birthday gift
Donna Armstrong was diagnosed with
early-stage melanoma when she was 5 months
pregnant. She is thankfully doing well after
minor surgery and since her diagnosis, she
has been passionate about raising awareness
and funds for melanoma research.
Paul’s story
Three years ago, MIA volunteer Paul
Watts lost his wife, Natalie, to melanoma.
The 29-year-old MIA patient was muchloved and well known to many of our
clinicians and support staff.
Sitting alongside Natalie for many of
her appointments, Paul was impressed
by the passion and dedication of the
doctors and nurses at MIA, who often
went above and beyond their duties.
This dedication inspired him to volunteer
his time and expertise at MIA.
“I felt like I could never repay all that the
Institute did for Nat,” says Paul. “The effort
that everyone put in to looking after her
and the genuine care that they showed
was critically important to us both.”
Natalie was diagnosed with melanoma
when she was only 15 years old and
had surgery to remove the mole. But 11
years later, a lump appeared in her groin,
followed by spots in her lungs, brain
and spine. Natalie’s life was extended by
an additional one and a half years after
being treated with a BRAF inhibitor and
participating in an MIA-led clinical trial on
whole brain radiotherapy. However, the
disease progressed and less than a year
Paul Watts and his late wife, Natalie.
after she married Paul, she lost her fight
with melanoma.
“The clinical trials team were amazing.
The care, the counselling and the
support – in addition to their nursing
expertise – was absolutely essential,”
Paul says.
Only 6 months after Natalie passed away,
MIA started the anti-PD-1 neurological
trial that was funded by money raised
from Melanoma March 2014. Paul
desperately wishes that Natalie could
have been on that trial, as it may have
bought him more time with his wife.
“Extension of life is the most important
thing for a patient,” Paul says. “These
new drugs can make such a huge
difference; not just to the patient but
to the loved ones that get left behind.”
A project manager by trade, Paul has
played a key role in organising our
Manly Melanoma March this year.
“I’m giving back by providing my time
and skills to help MIA raise money that
will ultimately help the researchers find
a cure. If I can help patients, and stop
their families from going through what
I’ve gone through, it’ll all be worth it.”
If you’d like to learn more about volunteering opportunities with MIA, please contact
Ariane at: [email protected] or phone 02 9911 7200.
MELANOMA INSTITUTE AUSTRALIA | NEWSLETTER AUTUMN 2016
Donna has donated her birthday presents
now for two years in a row – setting up
an online fundraising page, asking friends
and family to donate what they would have
spent on a gift.
Donna also held her own fundraising event
where she organised a charity screening
of the family film Minions. This is a great
fundraising idea to get friends together
and have the cinema drop the cost of the
screening so the majority of profits go
towards your fundraising!
Aidan shaves
away melanoma
Aidan El-Mohamed decided to shave
his much-loved hair in an attempt
to raise money and awareness for
melanoma after losing a close friend
and colleague to the disease.
For those close to Aidan, it was well
known that he was extremely fond
of his hair, making this challenge a
particularly big deal for him. Aidan
joked about the references that have
been made about his crowning glory
over the years: “bulletproof, more
consistent than my love life, and the
only thing that is constant in my life”,
he recalls with humour!
As added incentive, Aidan handed
the clippers to the most generous
donor. He raised over $17,500 to date!
Carole’s
Column
Research Update
Professor Graham Mann, Research Director
In 2016 MIA is continuing to make inroads with research that is
making a real difference to people living with melanoma.
A large amount of our work focuses on understanding melanoma
at the molecular level, so more effective prevention and treatment
can be developed. Much of this translational research is focusing
on how and why some people respond to the powerful new
generation of immune drugs. Our Melanoma Genome Project,
which is fully sequencing the DNA of melanomas from 500 Australian
patients, finishes this year. It has already revealed new targets for
treatment and shown how the most common types of melanoma
worldwide, which arise from fingers and toes or far from the skin,
have a completely different cause than melanoma of the skin.
We have pioneered a new, simple approach to screening
people who are at the highest risk of melanoma, and shown
that it is more effective and costs less than what generally
happens in the community.
Our world-first clinical trial offering new hope to patients
with brain metastases has gathered momentum with 50 people
across Australia now enrolled. The ‘ABC Trial’, which is comparing
immunotherapies, is showing encouraging results with some
patients experiencing a tripling of life expectancy. The trial is
funded by money raised during Melanoma March 2014.
The innovative surgical clinical trial known as EAGLE FM
has also advanced in recent months, being well supported
by the international melanoma community as it opened in major
melanoma units in Australia and Slovenia. Hospitals in the UK,
Holland, Sweden, and Brazil will also start recruiting patients soon.
This research will help surgeons develop comprehensive guidelines
on the optimum operation for patients who have metastatic
melanoma in their groin lymph nodes.
These practice-changing clinical trials are supported by the
Australia and New Zealand Melanoma Trials Group (ANZMTG)
with Principal Investigators from MIA.
MIA research:
The role of radiotherapy
New research is re-writing the textbooks on what we know about
melanoma by highlighting the effectiveness of radiotherapy as a
treatment, reversing a long-held belief that melanoma was resistant
to radiotherapy. The breakthrough has opened the floodgates for
more detailed research into this underutilised treatment.
We are running a number of clinical trials, working in partnership
with ANZMTG and many dedicated doctors around the world,
looking at where and how radiotherapy can best be used.
Results from our recent international trial in high-risk stage 3
patients have shown that the chance of melanoma recurring is
significantly reduced in patients who undergo radiotherapy after
lymph node dissection. Localised radiation is also helping curb
the spread of disease and improving quality of life.
Another trial is investigating the benefit of whole brain
radiotherapy for patients with brain metastases, while a separate
study is looking at irradiating tumours in patients already on
combination targeted therapy.
Tissue from our BioSpecimen Bank is also helping researchers
discover which types of melanoma are radiosensitive and which
are not. This knowledge will help us develop more personalised
medicine reducing unnecessary side-effects while effectively
targeting specific melanoma types.
MIA is pleased to welcome our new CEO,
Carole Renouf.
My first two months in the CEO seat have been a busy period
of learning and listening.
Reporting to me are a diverse range of operational areas
– Fundraising and Marketing, IT, Finance, Clinical Trials,
BioSpecimen Bank, Human Resources and Facilities – so getting
my head around those and getting to know the teams takes time.
As a management team we need to keep everything running as
smoothly as possible so our clinicians can do what they do best –
save lives, whenever they can, and extend lives.
I really enjoyed my first meeting with the Clinical Trials team
as they are running a number of world-first trials, managing over
30 at any given time. The trials which involve immunotherapies
and targeted therapies (targeting the action of specific genes) are
yielding great results for people with advanced disease,
who previously had very little hope.
I have not had as much time as I would like to get out and
meet MIA’s supporters and stakeholders, but increasingly
that will become an ongoing focus in the coming months.
I enjoyed launching the Melanoma March campaign (on my
second day!) and then participating in the Wollongong and Manly
Marches. I was able to do some media to promote the March.
It’s been great to meet patients to whom we are making a real
difference, as well as the dedicated volunteers who make this
campaign possible.
I’m looking forward to enhancing our research program, as new
areas of need or possibility are emerging. For example, there is a
significant number of patients now whose melanoma manifests
at advanced stages without any warning in the shape of a
changing mole or freckle, so this is an urgent and compelling area
for research. I’m also looking forward to creatively growing our
community education efforts, especially with the 15–39 year old
age group for whom melanoma is the most common cancer.
Carole Renouf
CEO, Melanoma Institute Australia
Our expertise in radiotherapy research is driving new and
exciting collaborations with other research centres around
the world, solidifying our international reputation as a leading
multi-modality melanoma research and treatment centre.
Professor Gerald Fogarty, Radiation Oncologist at MIA who
recently advised on a new melanoma centre of excellence in the
U.S. said: “We currently have collaborations at 30 sites around
the world including in the UK, Europe and both North and South
America to enrol patients in our radiotherapy clinical trials. These
doctors don’t get any financial gain out of these trials – they are
simply trying to improve the lives of their patients.”
By partnering with like-minded,
passionate and dedicated
doctors around the world, and
thanks to our patients involved
in clinical trials, MIA is finding
the most effective treatments
and ultimately saving lives.
Professor Gerald Fogarty
NEWSLETTER AUTUMN 2016 | MELANOMA INSTITUTE AUSTRALIA
A lasting legacy
Upcoming events
Gifts in Wills are a unique opportunity
to do more for melanoma research and
future generations than you ever imagined
possible. MIA’s purpose is to prevent, treat
and cure melanoma. If you share this vision,
then please consider leaving a gift to the
Institute in your Will so that together, we can
create a future without melanoma. Please
give our CEO, Carole Renouf, a call on her
direct line 02 9911 7358 or send her an
email ([email protected])
to discuss further.
Markets for Melanoma
(Sydney) – 13 May
‘Through The Looking Glass 2016’
Gala Event (Brisbane) – 14 May
SMH Half Marathon (Sydney) – 15 May
HBF Run for a Reason (Perth) – 22 May
Run Melbourne (Melbourne) – 24 July
City2Surf (Sydney) – 14 August
Running for a cure!
Visit our website (www.melanoma.org.au)
or contact us to find out more about these
upcoming events. If you are interested in
holding your own event, please contact us
on [email protected].
Running season is nearly upon us. With running events, like Run Melbourne and
Sydney’s City2Surf, coming up in the next few months, make your challenge even more
meaningful by fundraising to support our melanoma research. Setting up an online
fundraising page is easy. Visit our website’s events page for more information.
The success of our 2016
Melanoma March was
only made possible by
the dedication of our
volunteer committees.
Watch Your Mate’s Back
Up to one third of melanomas
are detected by someone
other than the person with
the melanoma.
Melanoma March Committees
This statistic inspired our summer awareness
campaign, Watch Your Mate’s Back, which
aimed to educate and help people to
understand what they can do to reduce the
likelihood of melanoma. As Australians we
need to watch out for our mates, and if we
see something suspicious, encourage them
to see a doctor!
Manly
James Economides
Paul Watts
Bathurst
Veronica Manock
Melbourne
Amanda Lucci
Nathan Jones
Bribie Island
Joy Leishman
Brisbane
Kerry Weir
Neville Weir
Emma Betts
Kate Davis-Steer
Cairns
Nicole Brown
In addition to using social media, statistics
were released as part of the campaign
to drive awareness of early detection of
melanoma which revealed some interesting
insights into the Australian population’s
views on melanoma.
Canberra
Sharon Dei Rocini
Linda Birkeland
Coolangatta
The Strand
Coolangatta
Natalie Quirk
Our roving researchers
Collaboration is vital to advance research. Our doctors and researchers work throughout
the year to present their findings at international conferences sharing research outcomes to
improve treatment for melanoma patients around the globe. A few key conferences that our
dedicated experts, like Professors John Thompson AO, Georgina Long and Graham Mann,
will be attending include:
31 August–3 September
16th World Congress on Cancers
of the Skin and 12th Congress of
the EADO (Vienna, Austria)
Adelaide
Rachael Sporn
(AMRF)
Bonny Hills
Paula Jackson
MIA partnered with Surf Life Saving
Australia, Rowing NSW and Golf NSW to
educate their members about how to stay
sun safe while enjoying their active lifestyles.
3–7 June
ASCO Annual Meeting (Chicago, USA)
With
thanks...
7–11 October
ESMO 2016 Congress
(Copenhagen, Denmark)
28–29 October
MIA will host The Australasian Melanoma
Conference (Sydney, Australia)
Darwin
Leonie Warburton
Hayley Chalkley
Alex Inggs
Devonport
Raeleen Bound
Angela Kenzie
Forster Tuncurry
Amanda Smethurst
Barbara Hayes
Gosford
Hayley Van-Elst
Picton
Mark Thompson
Jennifer Skuja
Sacha D’Souza
Tara Santillo
Port Lincoln
Denise Barnes
Monique Siegert
Peta Fuss
Jane Clements
Townsville
Mikkayla McLeod
Julie-Ann McLeod
Regan Green
Nicky Cole
Wagga Wagga
Kree Kennedy
Amy St Clair
Foundation
Western Australia
Clinton Heal
(melanomaWA)
Western Sydney
Debbie Henry
Gemma Carroll
Kyle Howle
Wollongong
Karen Ryan
Tennille Shelley
Melanoma Institute Australia
The Poche Centre
40 Rocklands Rd,
Wollstonecraft, NSW 2065
P: 1300 882 353
E: [email protected]
Follow us on Facebook,
Twitter and LinkedIn
www.melanoma.org.au