WINTER 2013
WORLD FIRST IN ACCOUNTABILITY FOR BREAST CANCER RESEARCH JOIN OUR NATIONAL COMMUNITY CONVERSATIONS STEP TOWARDS A CURE
Breast cancer survivor Jackie Cross with fellow NBCF supporter Oscar Portelli at the Gold Coast Global Illu mination event. Image courtesy of the Gold Coast Bulletin
FROM THE CEO those with a strong family history of breast cancer, for others the test costs around $1,600. NBCF therefore urges you to write to your local MP calling for a review of patent legislation involving human genetic material. Further details on www.nbcf.org.au. The second hurdle is the lack of options around preventative strategies. Radical surgery like a double mastectomy is effective in reducing risk of breast cancer. It is wonderful that today, women such as Angelina can make this choice, safely undergo the surgery and then opt for breast reconstruction if they wish. Anti-hormone treatments can also work as a protective regime. But are these really the only effective choices we want for high risk women? Research has brought us many gifts, including a growing understanding of risk. Greater investment in research across the prevention spectrum could bring us many more, as it has with the Australian development of a vaccine against cervical cancer. Surely our gold standard needs to be that women at risk should be able to preserve both their breasts and their life? Another Super Mother’s Day Classic On Sunday May 12, I joined thousands who took part in another successful Mother’s Day Classic. I would like to express the deepest gratitude from NBCF to Women in Super, the sponsors of the Last month Angelina Jolie disclosed she had a double mastectomy
Classic, the volunteers, and the runners and walkers who breathed
to minimise her significant risk of breast cancer. The truly shocking
life into this wonderful event all around the country.
part of Angelina’s story is not her decision, but the paucity of
Thank you for continuing to support breast cancer research.
options for her and others carrying the BRCA genes. In Australia, it is estimated that as many as one in five Australian women who have gene mutations make the same decision as Angelina. Research into prevention hasn’t received a strong focus. A Cancer
Carole Renouf
Australia audit reported that across cancer research funding (2003-2005), only 5% is dedicated to prevention. This follows funding patterns in the US, UK and Canada. Given that age is the single biggest risk factor for breast cancer, prevention is challenging but surely must remain the ultimate goal. NBCF has funded research into prevention since we were founded in 1994, including a recent international study which uncovered over 60 new regions of the genome that can increase risk of breast, ovarian and prostate cancer. Women in Angelina’s situation are in a much better position today, thanks to research. They are able to make an informed decision, assuming they can afford this economically. However, they face two unacceptable hurdles. The first is the lack of options around genetic testing. In Australia, there is only one test in the market and the February 2013 Federal Court ruling reconfirmed the exclusive right held by Myriad Genetics on that test. The upholding of this monopoly prohibits women from accessing alternative and/or cheaper tests. While it is free for
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YOU TWEETED US @NBCFAus Coco O’Grady: @NinjaWhinger My first mothers day without mum. I’ve donated the $ I would have spent on a gift to @NBCFAus because zero deaths by 2030 would be wonderful.
WORLD FIRST IN ACCOUNTABILITY FOR BREAST CANCER RESEARCH In April, NBCF released the findings of an independent report into the impact of our investment in research since 1995. The decision to commission the report was made because accountability is a key value for NBCF and the evaluation is the first in the world of the impact of such investment in breast cancer research. The report found that NBCF-funded research has had significant impact in key areas such as policy and decision making, development of new drugs and diagnostics, changes in clinical practice and gains in health and quality of life for women with breast cancer. “We want to be able to demonstrate to both existing and
h Mu rdoch, were the first to CEO, Caro le Ren ouf and Pat ron, Sara Res earch. sign NB CF’s pledge to Act Pin k for
potential supporters that any funds they donate are well spent and are having the greatest possible impact on both the battle against the disease and the quality of life for women with the disease,” Carole Renouf, CEO of NBCF said. Five-year survival rates for breast cancer have increased dramatically since the Foundation’s inception, from 70 per cent of all those diagnosed in 1994 to nearly 90 per cent today.
In addition to unveiling the report findings, NBCF also launched its Act Pink for Research campaign, urging the community to pledge to take action to help achieve zero deaths from breast cancer by 2030. Find inspiration and suggestions on how you can Act Pink for Research at www.nbcf.org.au.
Research and earlier detection have been the major factors behind that improvement and NBCF is committed to increasing
YOU TWEETED US @NBCFAus
survival rates further. “Research is a long, arduous and absolutely essential process to
WALTER + Eliza Hall: @WEHI_research WEHI’s Jayesh Desai on developing ‘game changing’ breast #cancer treatment w/ @NBCFAus grant.
change the health future and we are delighted that the report has confirmed that the money raised and invested in research has been well spent,” Ms Renouf concluded.
JOIN OUR NATIONAL COMMUNITY CONVERSATIONS What community needs and research questions would you like addressed? We’d like you to share your views with us as to where breast cancer research, and cancer research in general, should head and we’ll share with you what’s been achieved over the last 18 years. Join us at an event near you. • Australian Capital Territory Canberra: 11 November • New South Wales Sydney: 14 August Dubbo: 15 August • Northern Territory Darwin: 4 September
• Queensland Brisbane: 21 October Gladstone: 22 October
• Victoria Melbourne and Albury-Wodonga: 20 June
• South Australia Adelaide: 21 August • Tasmania Hobart: 20 August
NB CF - Fund ed Res earcher, Dr Sa man tha Oak s with her fa mily on Pin k Rib bon Day .
For more information or to register, please contact NBCF Events Producer, Richard Hughes on 02 8098 4800 or email richard.hughes@nbcf.org.au
If you are unable to attend our national Community Conversations, please go to www.nbcf.org.au and let us know your thoughts.
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WHEN ART MEETS SCIENCE How creativity can unlock the secrets of cancer. With a chemist father and an artist mother, Dr Fatima Valdes Mora believes she may well have the perfect heritage to be a cancer scientist. “I am like a mixture of both of them,” Fatima says. “I try to understand why things happen and to also think beyond that. To be a scientist you have to be creative, to think past the things that you can see.” Breast cancer research is a family affair for Fatima and her husband Dr David Gallego-Ortega, who are both NBCF-funded scientists at the Garvan Institute of Medical Research in Sydney. The two young Spanish scientists, whose projects are co-funded by Cure Cancer Australia, work on separate but related projects examining a master gene ruler called ELF5, which appears to play a key role in breast cancer spread and drug resistance. Given their close work ties, little wonder they find it hard to leave work at their door of the Garvan each evening. Their conversations over coffee or dinner inevitably return to work, with each providing a sounding board and different perspective to unlock the research problem at hand.
“To be a scientist you have to be creative, to think past the things that you can see.” Dr Fatima Valdes Mora with Dr David Gallego Ortega.
David admits he is less able than Fatima to separate work from home. “When I have a problem with an experiment, I am always thinking about it,”
Fatima hopes her work will help understand how ELF5 controls the
David says. “Fatima tells me to leave it alone for the weekend and then the
development of drug resistance which, in turn, may lead to more effective
answer will come to me – and it often does.”
treatments, particularly for patients with recurrent disease.
The current problem exercising David’s brain is how ELF5 works inside a
David and Fatima, who have been in Australia for four years, are thankful for
breast tumour and with the immune system to affect the spread (metastasis)
the chance to further their research careers in Australia.“Australia is one of
of breast cancer away from the original site in the breast, usually to the
the best countries for researchers, particularly early in their careers,” Fatima
bone. Once breast cancer spreads in this way, it is very difficult to treat
says. “We talk to our Spanish colleagues in Europe and the US and we share
effectively. While ELF5 drives many of the changes in the breast for
experiences – we are very happy here compared with them.” David says
pregnancy and lactation, it also has a dark side – it can make breast cancer
that Australians respect and appreciate researchers. “That doesn’t happen
more aggressive and metastatic, and resistant to drug treatment.
in Spain. If you say in Spain that you’re a scientist, people think you‘re a
“We have been focusing on what ELF5 does inside the breast tumour cell,
medical doctor. They don’t understand what researchers do.”
but we have found that other non-tumour cells work together with ELF5 to
Importantly, David and Fatima believe that the Australian people, such as
produce a more aggressive cancer that is more likely to spread,” David says.
those who support NBCF, understand that research is an investment for the
Fatima is also focusing on ELF5, which has recently been identified as a key
future, not a quick fix.
player in the development of resistance to anti-hormone therapies, such as tamoxifen. While tamoxifen is a very effective therapy for many patients with hormone-responsive breast cancer (the most common form of the disease), some women do not respond to this drug or become resistant to its effects over time, causing their cancer to come back.
Thanks to NBCF funding, David and Fatima continue to chip away at their research projects, inspired by their family, past and future. Fatima chose to follow a career in cancer research just after her grandmother died of breast cancer. “I felt that I wanted to help somehow, so I thought the best way I could help
THE POWER OF COMMUNITY
her was doing my future research in cancer. My grandfather died of lung cancer when I was finishing my PhD, and then my brother had a testicular
NBCF is much more than a source of funds to David and Fatima – it is a community. “With NBCF, we feel part of something and we feel like someone is looking after us,” Fatima says. “NBCF is very passionate – they believe in us. That makes us feel proud but, at the same time, it’s a big responsibility.” As a young scientist, David is happy to be counted among the community of researchers who receive NBCF funding. “When you see other NBCF-funded scientists, you know they are very good and you feel proud of yourself,” he says. “This helps you to continue day to day even when things get tough. There are people who think you can make a difference and you have their support.”
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tumour at age 20, thanks to the early detection and a very close follow-up he’s cured now,” Fatima says. “I have a history of very close family with cancer and that’s something that keeps me hungry, trying to find answers.” Now David and Fatima have a new focus: what they might achieve for the generation of their first child – a girl – who is due in July. “We are working for our daughter,” David says. “We are working to stop breast cancer in her generation, so that people dying from breast cancer is something from the past.”
STEPS TOWARDS A CURE: GREAT WALL OF CHINA TREK 2014 Receiving the news that you or someone you love has been diagnosed with breast cancer is devastating. Five-year survival rates have increased dramatically since NBCF was founded, from 70 percent in 1994 to 90 percent today, but there is still so much to do - and you can help. For the first time ever, you can join Steps towards a cure: Great Wall of China Trek 2014 to make a difference for the important women in your life. You will help us fund vital breast cancer research that could contribute to the next scientific breakthrough. Join NBCF and Inspired Adventures on the adventure of a lifetime in 2014. Tre Great Wall Of China
Over five days, you will trek the remains of one of humankind’s most
k
incredible structures. You will discover sections rarely visited by tourists, and experience the real China, as you stay in local villages – all with our expert guides showing you the way. You’ll also spend time visiting iconic sites of the capital Beijing.
Fast Facts: Date: 30 May 2014 Registration Fee: $770
And just think – each and every step you take will remind you of the
Fundraising target: $3,300 (doesn’t include travel)
difference you have made in the lives of Australian women by raising funds
Travel cost: $3,790 including taxes (can be fundraised - conditions apply)
for vital breast cancer research. Places are limited. For more information, visit www.inspiredadventures.com.au/NBCF/China, call Georgi at 1300 905 188 or email georgi@inspiredadventures.com.au.
Trip duration: 11 days Physical activity: 5 days trekking Challenge grade: 3/5 Accommodation: 3-star hotels and guest houses
After a decade of outstanding A
As part of their commitment to raising awareness about breast
generosity we are proud to
cancer and supporting the need for more research, Double A
announce ghd Australia as
activated its Go Pink! challenge which resulted in creative
a Pink Diamond partner of
displays of support for NBCF in Officeworks stores across the
NBCF. The leading styling
country in May.
brand has supported NBCF through the sale of their pink limited edition styler and donated thousands of dollars of in kind product for fundraising events. Their giving stands at more than $3,000,000.
The environmentally friendly paper is also helping to fund research into lymphoedema, an incurable condition where lymph fluid builds up in tissues, usually in the arm, causing swelling and discomfort. Current treatments can be uncomfortable, expensive and time consuming. Researchers are developing a ‘lymph sleeve’, an ingenious garment that detects
ghd is associated with the inaugural NBCF Translational Grant,
swelling and squeezes the arm to enhance lymph flow. The
which was recently awarded to Professor Geoff Lindeman,
light-weight sleeve, which can be worn with normal clothing,
from the Walter and Eliza Hall Institute and Royal Melbourne
could significantly improve quality of life for the nearly one-
Hospital, and his team to transfer their laboratory findings to
third of women who develop lymphoedema after surgery for
the clinic to help patients.
breast cancer.
Professor Lindeman’s team is researching a new class of drugs that targets proteins in cancer cells that help the tumour survive and resist treatment. If successful, their research could see the drugs being used to treat breast cancer patients for the first time in the world. Each year, in collaboration with its dedicated salon partners, ghd launches a new version of the award-winning styler to raise even more funds for breast cancer research - and this year will be no exception. Watch out for the 2013 ghd pink limited edition styler gift set, set to launch later this year.
Double A’s Go Pin k! M ay
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JACKIE’S STORY Jackie Cross knows the heartache breast and ovarian cancer can bring to a family all too well. Her grandmother, aunty and mother were all diagnosed with the diseases. She had never known a life without cancer and unknowingly held onto so much fear. Like Angelina Jolie, Jackie was diagnosed with the BRCA1 gene – a hereditary gene mutation which put her in a high risk category for developing breast and ovarian cancer. The gene mutation gave her up to an 80% chance of getting breast cancer and a 60% chance of getting ovarian cancer. After making the life-saving decision to have a preventative double mastectomy and hysterectomy Jackie calls herself a breast cancer ‘pre-vivor’. Here, she shares with you her passion for the research which
ter Cro ss wit h fellow NB CF suppor Breast can cer survivor Jackie nt. st Glo ba l Illu mi nat ion eve Oscar Portelli at the Go ld Coa n d Coast Bulleti
Image courtesy of the Gol
saved her life and her hopes for the future. I had a time bomb on my chest – and it was ticking. Loudly.
What made you decide to become involved with NBCF?
YOU TWEETED US @NBCFAus Sarah Murdoch: @SarahAMurdoch
All the fundraising, all that research – it saved my life. As a result of breakthroughs in genetic screening it allowed a mutation to be
@NBCFAus researchers play key role in world-first genetics study that could improve cancer screening and treatment
recognised and identified in my DNA. I feel incredibly lucky that research has delivered us to a position where a family history like mine isn’t a curse. I wasn’t brave or heroic. I was blessed. My diagnosis empowered me. I was lucky. I had a choice. One in eight women who are diagnosed with breast cancer don’t have a choice. My motivation is to make sure my Mum – or in fact any women – did not battle this disease in vain. What does the community support of NBCF mean to you? As with any diagnosis, I was scared and I had so many questions. Coming from a high risk family, I didn’t have my mother or grandmother to speak to once my BRCA test returned a positive result. Immediately, fellow breast cancer survivor and NBCF fundraiser, Robyn Cameron, came to my rescue. We are still great friends – we share a special bond.
For the last two years, The High Tea Party has helped raise awareness of NBCF’s online community, Register4.org.au at their popular tea
Share with us a special moment that has stayed with you
parties across Australia. This year, The High Tea Party has also raised
through your breast cancer journey.
over $20,000 for NBCF through fundraising and the ticket sales to
After my surgery, I was asked to do an interview for an online media forum. I talked about my decision-making process and how determined I was to not follow in my family’s strong history. Almost 12 months later, I was at a fundraising lunch. A young girl walked up to me and explained that she had her genetic test & subsequent mastectomy because she saw my online interview. I immediately became aware of
their Brisbane event in April. To help raise even more funds for breast cancer research, please join them for high tea, pampering, fashion and shopping at an event near you. • 20-21 July 2013 – Park Hyatt, Melbourne • 2-3 November 2013 – Hilton, Sydney
how powerful sharing my story to help NBCF could become. It was
• 9-30 March 2014 – Sofitel, Brisbane
such a special moment.
Bookings Essential.
What do you hope breast cancer research will achieve?
To claim your $25 discount, enter ‘NBCF’ when ordering your tickets
My dream is that my children or grandchildren will live a life where
online and $10 will also be donated to NBCF.
being in a high risk category for breast cancer is no longer a fear. www.thehighteaparty.com.au
www.facebook.com/NBCFAustralia www.nbcf.org.au 6
@NBCFAus