MESSAGE FROM CEO

CURELATEST NEWS OF THE CURE FOR LIFE FOUNDATION APR 2013

www.cureforlife.org.au

In December 2012, the Board of Cure For Life Foundation (CFLF) mandated a new strategic direction to accelerate a cure for brain cancer in 10 years, an approach that will benefit patients with faster access to therapeutic treatments. To realise this goal, the Foundation has reorganised ways of working to support this change across the system.

Since this mandate, we have rolled out a number of exciting initiatives aligned to this 10 year goal including an announcement at Parliament House on 13 March of $1MIL investment to the Brain Cancer Discovery Collaborative (BCDC) – a national collaborative in brain cancer research involving UNSW, Monash University and Queensland Institute of Medical Research. The BCDC provides Australia with a model to accelerate findings and bolster our translational research capabilities, connecting patients directly with research and higher volume of clinical trials. You can read more about the launch in this newsletter.

On the same day, we also launched our first consumer advocacy training workshop in Canberra. Further consumer advocate training sessions are planned for this year across Australia. We encourage registration of your interest to attend this important one day workshop that will support advocacy in brain cancer research.

The Foundation also held its first Global Brain Exchange (GBX), which produced a model to support and nurture our brightest talent and align the brain cancer community towards a singular purpose. Within a fortnight of the workshop, there have been seven self-organising working groups formed spanning research, patient care, collar/change management, brand and communications, clinical trials, global collaboration and funding. You can contact me directly to receive a briefing on our strategic direction and research focus or if you want to be involved in any of the groups or establish your own working group based on the strategic priorities.

There are many people to thank this quarter - thank you to Keri Huxley who has worked tirelessly on our Government advocacy work, Rebecca Veness for bravely talking about her late husband, Peter, at the BCDC launch, Kathy Ferris who packaged up our communications for the launches, Stefanie Owen, Lisa Carlin, Alex Klat-Smith, Lucille Foster and Matt and Gail Taylor for working tirelessly on the GBX workshop; Cath Holliday for her work in Consumer Advocacy training and Bruce Hayman who has been so helpful

in developing the business and operations planning and strategic counsel.

We greatly appreciate support for brain cancer research and the Foundation from The Hon. Tanya Plibersek MP, Minister for Health; The Hon. Peter Dutton MP, Shadow Minister for Health and Ageing and Elizabeth Foley, CEO, Research Australia for speaking at the BCDC launch event at Parliament House and to The Hon. Joe Hockey, Member for North Sydney and Shadow Treasurer and other MP’s for attending the launch in support of our cause, including Senator Catryna Bylik for her invaluable behind the scenes support. In addition thank you to Dr Sarah Caddick, Neuroscience Advisor, Prof Webster Cavenee, UCLA and Kees von Toll Kleihues, World Health Organisation for visiting Australia to participate in the GBX workshop and our brilliant Australian minds who participated at the workshop, many forgoing important commitments to be there, it was a tremendous effort with an outstanding result that will serve to accelerate a cure for brain cancer in 10 years.

Thank you also to our donors who attended our cocktail party in March where we highlighted the great work of our researchers and demonstrated where your funding support is being invested in the most worthy research projects and collaborations.

We have so much to celebrate, momentum is growing every day along with our supporter base, as we become increasingly aligned and purposeful in our service to patients, researchers, donors and supporters. I hope to see many of you at our Gala Ball on 4 May, we will have plenty to share with you in celebration of our collective efforts.

Yours sincerely Catherine Stace CEO

Dr Cath Holliday, presenter of consumer advocate training

Dr Charlie Teo with The Hon. Peter Dutton MP, Shadow Minister for Health and Ageing

Senator Bill Heffernan, Rebecca Veness and Keri Huxley

Elizabeth Foley, CEO, Research Australia

The Hon. Tanya Plibersek MP, Minister for Health

FOUNDATION bRINGS RENOWNED NEUROSCIENTIST TO SyDNEyCure For Life Foundation had great pleasure in recently hosting Dr Sarah Caddick, Senior Neuroscience Advisor at the Gatsby Charitable Foundation, UK, to attend our first Global Brain Exchange as well speak at our annual Cocktail Party. Here we profile Dr Caddick’s career that has now sees her responsible for guiding and facilitating brain research for one of the most influential foundations in the UK.

Neuroscience is one of six programme areas for the Gatsby, set up by David Sainsbury (now Lord Sainsbury of Turville) in 1967. The Foundation is more than a provider of funds; it facilitates projects in areas of need from design and development to delivery. The Gatsby approach is long-term, with a focus on strategic partnerships, mutually beneficial collaboration and support for basic research and innovation.

In addition to the Gatsby neuroscience portfolio, Dr Caddick is responsible for overseeing the establishment of the Sainsbury-Wellcome Centre for Neural Circuits and Behaviour, a multi-million pound partnership between the Gatsby Charitable Foundation and the Wellcome Trust. Due to open at the University College London in 2014, research performed at the Centre will investigate how neural circuits within the brain process information to direct behaviour.

Dr Caddick also promotes neuroscience to diverse audiences through participation at conferences such as the Skoll World Forum and TED Global. All participants of the GBX were extremely grateful for Dr Caddick’s expertise and we look forward to working collaboratively with the Gatsby Foundation as we work to achieve a cure for brain cancer in 10 years.

Dr Sarah Caddick, guest speaker at the Foundation’s annual cocktail party

TOUR DE CURE’S 2013 DAy OF INSPIRATION One of our most valuable supporters, Tour de Cure, held another successful Day of Inspiration in Sydney. Be inspired by speakers’ stories plus mind-maps of the day at dayofinspiration.com.au, including Jim Wilson (Ch 7), Dan Gregory (ABC’s Gruen Transfer), rocker Angry Anderson, Rachael Robertson (who lived 3 months in a bunker) and Pat Farmer (ultra-marathon from North to South Pole).

CURE FOR LIFE FOUNDATION HAS MOvED!In early March, the Foundation moved to vibrant Surry Hills. We thank all our supporters and suppliers for your patience over this last quarter whilst we were busy locating and fitting out our new office whilst also managing our day to day business including launching a number of new initiatives and training new team members.

THIS DEAL IS RUNNING OUT THE DOOROne of our long-term supporters, Three Points, has teamed up with a new brand of compression sports garments, Compress One, to help raise money for Cure For Life Foundation. The BE A HERO campaign will donate $2 from every Compress One garment sold - and you’ll be a real life hero to so many families. Just visit compress1one.com.au to view the range. Makes a great present for fitness fanatic in your life!

We are thrilled to announce that Cure For Life Foundation held the first of five Global Brain Exchange (GBX) DesignShops, in Sydney on 15 and 16 March and has started the journey to redefine ways of working and address unmet needs in research.

The intensive 2-day DesignShop attendees witnessed the bringing together of 40 peers from an array of fields and saw the exchange of creative energy, dialogue, models, practical applications and outcomes, which have now provided a platform and launched GBX.

The facilitators, Matt and Gail Taylor and their team of knowledge workers, led by Alex Klat-Smith, brought an unsurpassed expertise in the design and facilitation. You can view the outcomes report and videos by joining our GBX LinkedIn group. Please email lucille.foster@cureforlife.org.au to join.

We are extremely proud to have led and started this change and we will continue the journey thanks to the generosity of the Australian public.

GLObAL bRAIN ExCHANGE - A GIANT LEAP OF SCIENCE

Our new address: PO Box 392 Surry Hills NSW 2010Our phone and fax remain unchanged: Tel: 61 2 9550 5244 Fax: 61 2 9550 5655

Gail Taylor Facilitators

Cure For Life Foundation’s director Dr Charlie Teo (left) presents a cheque for $1m to BCDC Founder A/Prof Terrence Johns and BCDC members Prof Andrew Boyd and Dr Kerrie McDonald.

The Brain Cancer Discovery Collaborative (BCDC), established in January 2012 by Associate Professor Terrence Johns, Monash University, Dr Kerrie McDonald, UNSW, and Professor Andrew Johns, Queensland Institute of Medical Research (QIMR), brings together brain cancer researchers from around Australia to expand the capacity of clinical brain cancer research in Australia.

“One of our main challenges is driving new therapeutic strategies for brain cancer from discovery to the clinic. Thanks to $1 million from Cure For Life Foundation, we can accelerate this process by centralising resources, supporting core facilities and enabling the coordination of clinical trials,” said Associate Professor Terrance Johns, BCDC Director.

Without the continued generous support of Cure For Life Foundation fundraisers and sponsors, clinical trials for new brain cancer therapies may not occur. The Foundation is committed to ensuring the translation of Australian research to the clinic, bringing us closer to a cure for brain cancer.

Brain cancers consist of many different cell types, but it is unclear which cells are responsible for driving tumour initiation.

Glioblastoma (GBM) is the most common primary brain cancer in adults and kills approximately 1,000 Australians every year, the majority within two years of diagnosis.

Prof Andrew Boyd, Dr Bryan Day and Dr Brett Stringer from QIMR, recently published evidence that a population of tumour-initiating cells are found in aggressive GBM and may be present in the majority of GBMs. It is the continued presence of these tumour-initiating cells, even after radiotherapy and chemotherapy that may be the reason for the recurrence of the tumour in GBM patients.

“New treatments for this aggressive type of brain cancer are an urgent clinical challenge. Despite the best efforts of medical researchers, survival rates for GBM have barely changed in 50 years,” said Professor Boyd.

The presence of a molecule known as EphA3 on the surface of these tumour-initiating cells makes this discovery even more significant for GBM patients. An antibody that slows down Eph3a reduces the growth of these aggressive cells and is already in clinical trials for leukaemia.

“It is early days, but we know brain cancer cells which have EphA3 can be destroyed in the laboratory with this treatment, so it’s very encouraging in terms of developing a new treatment for brain cancer. My hope is for a clinical trial of this antibody in brain tumours in the next two years,” Dr Day said.

CURE FOR LIFE FOUNDATION TO FUND bCDC CLINICAL TRIAL WITHIN TWO yEARS

Richard Wilkins Sneaky Sound System Prinnie Stevens

It doesn’t matter whether you sprint or walk, if you have a passion for fundraising for Cure For Life Foundation you can join Team Cure For Life and register for City2South (Brisbane, 16 June), Run Melbourne (21 July) or the world’s largest fun-run, The Sun-Herald City2Surf (Sydney, 11 August).

You can also register for City2Surf as a Gold Runner and preferred

starting position behind the Elite and Red groups. Gold Runners commit to raising a minimum of $1000 for the Foundation and receive an exclusive running shirt and gold bib as well as support and fundraising tips from our fundraising and events team.

Visit cureforlife.org.au/events/ or call Emily on 02 9550 5244 to register your entry for one of these great running events

and help Team Cure For Life become the number one fundraising team for 2013.

See you at the finish line!

RUNNING SEASON IS FAST APPROACHING

Cure For Life Foundation Passion4Life Gala Ball, Saturday 4 May, will ignite your passion for a cure, hoping to surpass last year’s amazing result of $1million for brain cancer research.

Hosted by Richard Wilkins with performances from “Prinnie Stevens” (The Voice 2012) and “Sneaky Sound System”, you’re bound to be up and dancing.

We will be offering lots of exciting major auctions such as:

• A luxury 8 day cruise in Spain for six guests on a magnificent 100ft ‘Triple Eight’, including catering, beverages, fuel and a three person crew. Cruise to be taken August 15–23, 2013.

• One of Australia’s favorite live performers and co-host of Nine Network’s Mornings show, David Campbell will be auctioned off to one lucky bidder to have David perform at a private gig – we’ll let you know the venue at the ball.

• Dinner for eight at the private chef’s table at Matt Moran’s two hat Aria restaurant, including a special guest to be announced on the night.

• Private surf lesson with seven-time world champion surfer Layne Beachley. Plus a signed Layne Beachley surfboard.

• A weekend at the Veuve Cliquot at the snow in Thredbo – accommodation, lift passes, invitations to selected Veuve events plus a SMEG Veuve fridge AND a two hour lesson with Stuart Diver.

Raffle prizes such as:

• Likuliku Lagoon Resort in Fiji.

• AYANA Bali Resort & Spa in a one bedroom cliff top villa with private pool and ocean views.

If you would like to purchase Passion4Life tickets please go to www.cureforlife.org.au/gala_ball or donate an auction prize or volunteer for the night by contacting us on (02) 9550 5244.

Brain Strain Trivia Fundraiser Saturday, 20 AprilSwing For A Cure Sunday, 21 April Brain Cancer Action Week Sunday, 28 April–4 MayCure For Life Foundation Passion4Life Gala Ball Saturday, 4 MayMusic For Life Friday, 14 JuneCity2South, Brisbane, join Team Cure For Life Sunday, 16 JuneRun Melbourne, join Team Cure For Life Sunday, 21 July

City2Surf , Sydney join Team Cure For Life Sunday, 11 August The Gala Purple Saturday, 14 SeptemberLucky Hearts Ball Saturday 12 October Lunch4Life Thursday, 17 OctoberCure For Life Foundation Golf Day Thursday, 24 October Walk4Life Sunday, 3 November The Rams Survivor Shootout Sunday, 1 December

Cure For Life Foundation Consumer Advocacy TrainingA free event where everyone is welcome to come and learn about cancer research, the roles of government and not-for-profit sectors in research and the role that the community can play. To register, email: catherine.holliday@bedsidetobench.com

Sydney 2 MayMelbourne 31 JulyBrisbane 6 SeptemberAdelaide 11 November

2013 EvENT CALENDAR You can find out more about these events by emailing events@cureforlife.org.au or visiting cureforlife.org.au.

Brain Cancer Action Week Sun 28 April – Sat 4 MayHelp us raise awareness and funds for brain cancer research by holding your own community fundraiser during Brain Cancer Action week or take part in one of the events already planned. Visit cureforlife.o rg .au/bra in_cancer_ac t ion_week or email events@cureforlife.org.au to register your fundraiser

Do you like to lunch with a purpose? You can hold your own Lunch4Life. Just email events@cureforlife.org.au or call us on 02 9550 5244 and we’d be happy to help.

IT’S A WRAP! EvENT REvIEWS

Cure For Life Foundation’s cocktail party was in full swing on Tuesday, 19 March at Manta Restaurant, Woolloomooloo Finger Wharf. Held annually to thank supporters and sponsors, the night attracted a wealth of high profile researchers including Prof Phil Hogg and Prof Robyn Ward from UNSW as well as some famous faces including Penne Dennison, Kelly Asseff , Dr Katrina Warren, Holly Brisley and husband Paul Ford, Tim Farriss (INXS) and wife Beth, as well as the Miss Universe Australia winner Laura Dundovic and partner James Kerley.

Guests were also privileged to hear guest speaker Dr Sarah Caddick, Neuroscience Advisor to Lord Sainsbury of Turville, UK, who urged us to be excited about funding research into causes and treatments for brain cancer. “The brain is the cause to back in the 21st century,” said Dr Caddick.

A special thank you to Sticks and Wicks for providing free of charge their artistic table features and photographer Tessa Tran for volunteering her time on the night. Tessa’s photos can be viewed at www.facebook.com/cureforlife

Thank you to Michael Gray and family for putting on an amazing display of over 80,000 lights at Cambage Court, Davidson over Christmas. “A total of $4,775 has been donated to Cure for Life Foundation in addition to the $800 raised through the sale of Christmas Carol CDs,” wrote Michael. Visit www.cambagecourtchristmaslights.com to view photos.

Zach Zerri, North Haven Public School, wrote to us recently and enclosed a cheque for $600 that he and two friends raised by shaving their heads during their school assembly. This is the second year that Zach has supported the Foundation and Dr Charlie Teo would like to pass on special thanks for the boys efforts and those who supported them.

COCkTAIL PARTy

The Illawarra branch of the Cake Decorators Guild of NSW recently donated $750 to the Cure For Life Neuro-oncology Group at UNSW as their chosen charity for 2012, in memory of a member’s husband. This money goes to support researchers who are screening new therapies, such as PENAO, the most recent drug screened that is now in clinical trial.

CAkE DECORATORS GUILD OF NSW

CAMbAGE COURT CHRISTMAS LIGHTS

Thank you to all the volunteers on the night and fans that purchased tickets and made donations at the Waratah’s Charity Match for Cure For Life Foundation on 14 February. We got to watch a wonderful start to the season, with the Waratahs narrowly defeated by NZ Crusaders. Most of all thank you to Volvo Cars Australia and HSBC Waratahs for their continued support and providing us with this fantastic opportunity to raise awareness and funds for brain cancer research. Gus Larkin is pictured below (centre) with his brother Van (left) and cousin Otis, enjoying the night with exclusive seats in the Waratahs Dugout.

HSbC WARATAHS CHARITy MATCH

Well done to over 34 motorcyclists who rode from Bundanoon to Bathurst in March, raising over $1,400 for Cure For Life Foundation in memory of Alan Ryan aged 9. Alan’s grandfather hopes to make the ride an annual one.

INAUGURAL RIDE FOR ALAN RyAN

A SHAvE AbOvE THE REST

PO Box 392 Surry Hills NSW 2010

Level 1, 351 Crown Street, Surry Hills NSW 2010

Tel: (02) 9550 5244 Fax: (02) 9550 5655

info@cureforlife.org.auwww.cureforlife.org.au

IN MEMORy We pass on our condolences and gratefully acknowledge gifts in memory of the following people:

DON’T FORGET TO CLAIM yOUR DONATION AS A TAx DEDUCTIONThe end of the financial year is just around the corner so don’t forget that you can claim any donations over $2 made to Cure For Life Foundation as a deduction in your tax.

SAvE THE FOUNDATION POSTAGE AND PRINT COSTSIn an effort to reduce our administration costs, we’d like to email you this newsletter – just send an email to admin@cureforlife.org.au

Don’t forget to “Like” us on Facebook.com/cureforlife to receive updates as they happen.

In CURE’s last issue we wrote about an incredible supporter, John Lance, who raised funds for the Foundation in memory of his late wife Sandra. Sadly, John lost his own battle with cancer in December and our condolences go to John’s family and friends. John was determined to raise funds for brain cancer research even when undergoing his own treatment and his family would like the Foundation to continue to promote his book, Better than an MBA, dedicated to his wife, children and grandchildren. Buy the ebook at momentumbooks.com.au/books/better-than-an-mba/ for $9.99 or a hardcopy can be mailed for $27.99 and profits will go to brain cancer research.

vALE JOHN LANCE

THANk yOUFOR DONATIONSLAST CHRISTMASIn the lead-up to Christmas, we wrote to you about the intelligent machines at Drug Discovery Centre, Children’s Cancer Institute of Australia (CCIA), that can compress nearly a year’s worth of manual research into as little as a day. We thank you for your generous donations to the Foundation over this period and we were pleased to recently present over $34,000 to CCIA, which they will use to support researcher Dr David Ziegler’s project on malignant gliomas and cover some of the costs of screening new treatments. We look forward to updating you on the success of this project.

A close friend of Dan Jordan’s family, Kim Annear, has raised an amazing $21,200 for Cure For Life Foundation in memory of Dan by swimming solo in the Rottnest Swim last February. As thanks to Kim and in memory of Dan, we wanted to share his story of survival.

Dan was diagnosed with a brain tumour the size of an orange when he was 11. During his teenage years, Dan also developed hemiplegia, which caused paralysis in his left arm, and produced cognitive, memory and vision problems.

He had intensive chemotherapy and radiotherapy without success. His parents then approached Dr Charlie Teo, the only surgeon they could find willing to operate.

Dan, then 15, underwent three grueling operations totaling almost 35 hours at Sydney’s Prince of Wales Private Hospital in July 2000. Dr Teo removed about 98 per cent of the growth, describing it as one of the rarest and most difficult tumours he had encountered.

Dan tackled the rest of his life with renewed zest. After finishing his schooling at Christ Church Grammar

School, he graduated with a communications degree from Notre Dame University in 2009 and then worked part-time with The West Australian as a writer.

Daniel Jordan, whose childhood battle against a massive brain tumour won admiration across WA, died suddenly from a major cerebral haemorrhage in September 2012. The attack came without warning while he was at work. He was 27.

Dan’s favourite expression was “it’s all good”. That approach to life was reflected in the adage Dan wrote on his Facebook page. “What will be will be, we can’t change it. All we have to do is understand ‘That’s just the way it is’.”

FAREWELL TO A FIGHTER

IN CELEbRATION Alan Wolf 60th Birthday

Andrew Taylor Cheryl FrippDaniel Jordan David Gowing Dennis Gallagher Frank Zappia Geoffry Thorpe Giuseppe Volpe Harrison Thomsett Jane Wilson Janette Wilson Janette Baillie

John Byrnes John Lance Julie Mitchell Kim Roulstone Kristina Pearn Margie O’Dwyer Matthew Kilby Peter Rose Sandra Straube Stephen Neville Wendy Miller