THE OFFICIAL BTAA NEWSLETTER INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION 2018

OCTOBER 2018 EDITION BTAA.ORG.AU

This newsletter was produced with the assistance of donations.

INSIDE THIS ISSUE

Diary Dates

Letter from the Chair CURE BRAIN CANCER Brain Cancer Biobank DRIVES RESEARCH Critical For Research

Peace of Mind Provides Here and Now Support

COGNO (Cooperative Trials Group for Neuro-Oncology)

Cure Brain Cancer’s $20 Million Commitment

New resources for FORUM DEMAND HIGH brain tumour patients Grant Supports Neuro Oncology Nurse Practitioner

Mel Goes Grey Success

Brain Tumour Patients and Super Based Insurance

Brain Tumour @BrainTumourAA Search ‘BTAA’ for Alliance various videos COGNO BRINGS Australia

ABN 97 733 801 179 RESEARCH LEADERS Incorporated in the ACT: AO45837 Freecall number 1800 857 221 MELBOURNE BRAIN CANCER SHAPING THE FUTURE OF SYMPOSIUM 2018 COLLABORATIVE CARE FOR NEURO ONCOLOGY “Finding a proactive approach to patient care”

The Melbourne Brain Cancer Symposium will be a Wednesday 10th October 2018 5 pm -8 pm wonderful opportunity to hear from a number of specialists Meet the leaders in Neuro Oncology in the brain cancer arena. Professor Terri Armstrong: PhD, Advanced Practice A.Prof Mustafa Khasraw Nurse, researcher and brain cancer specialist will present Highlights of COGNO 2018 the keynote address: “Proactive vs Reactive: Dr Lawrence Cher: Research developments and Prof Susan Chang directions in brain cancer direct from COGNO. Quality of life issues faced by patients and their families Dianne Legge: Brain Tumour Support Coordinator, will discuss practical strategies on fatigue management in Dr Terri Armstrong brain cancer. Senior Investigator of the “Patient Outcome Program” This symposium is targeted for those nurses, allied at the U.S. National Cancer Institute. health professional and doctors who come into contact with brain cancer patients and would like to understand This event is suitable for Medical, Nursing and Allied more and hear about recent developments in care and Health interested in the care of Neuro Oncology patients treatment. To register go to: Eventbrite.com and search for Book through the BTAA website or call 02 84253610 Melbourne-brain-cancer-symposium-2018-tickets Location Date and Time Location Wallace Freeborn Lecture Theatre Level 5, Kolling Building, Royal North Shore Hospital th Olivia Newton-John Cancer Wellness & Research Centre Friday 12 October 2018 Reserve Road, St Leonards, NSW 2607 2:00 pm – 5:00 pm AEDT Level 5,145 Studley Road, Heidelberg, VIC 3084

2018 DIARY DATES IMPORTANT EVENTS

EVENT WHERE WHEN Brain Tumour Forum Cancer Council Queensland Sunday, 553 Gregory Terrace October 7,2018 Fortitude Valley Qld 10am – 2:30pm Shaping the Future of Wallace Freeborn Lecture Wed 10th Collaborative Care for Theatre October 2018 Neuro Oncology Level 5, Kolling Building 5pm- 8 pm Royal North Shore Hospital Reserve Road St Leonards NSW 2065 Melbourne Brain Olivia Newton-John Cancer Friday 12th Cancer Symposium Wellness & Research Centre October 2018. 2018 Level 5,145 Studley Road 2:00 pm – 5:00 Heidelberg, VIC 3084 pm AEDT “A Little Bit” fund raiser Coorpaoo Bowls Club Sat 13th Brisbane, QLD October 2018 6.30 – 10.30 pm White Pearl Ball Hyatt Regency 10th November, 161 Sussex Street, Sydney 7pm SNO (Society for New Orleans, Louisiana November 15- Neuro-Oncology 18 2018 23 Annual Meeting and Educational Day ACT Trivia Night Canberra Croatian Club 30 November 7.00-11.00 pm Brain Cancer Action Australia Wide May 2019 Month BTAA INTERNATIONAL BRAIN TUMOR AWARENESS WEEK EDITION | OCTOBER 2018

LETTER FROM THE CHAIR

International Brain Tumour Brain Cancer Action Week awareness Week The month of May was all about Brain Cancer Action The International Brain Tumour Awareness Week is activities. BTAA attended and supported Patient held every year across the globe to raise awareness, Forums in Sydney, Newcastle, Melbourne and and to raise funds for support and research. We Geelong. BTAA foresees that next year patient forums produce this newsletter each year during International will be held in other states as well. All events were very Brain Tumour Awareness Week to acknowledge well attended and many patients and their families the many groups, both small and large, and the travelled long distances to attend, demonstrating the individuals, that work tirelessly to improve outcomes ongoing need for this type of event. for brain tumour patients, their carers and their The Sydney forum was organised by NSWNOG, families across Australia. This year, from Saturday the Newcastle by the Mark Hughes Foundation, the 20 October to Saturday 27 October, people around Melbourne forum was held at the Olivia Newton- the world people will hold walks and activities to raise John Cancer Centre and the Peace of Mind Forum awareness and fund for support and research. conducted of forum in Geelong. This year during International Brain Tumour Awareness BTAA ambassador, Melissa Johnson also held Week the Cooperative Trials Group for Neuro-Oncology her annual Mel Goes Grey in May dinner and fund (COGNO) Annual Scientific Meeting will be held in raising night. Over $10,000 was raised and this was Brisbane from the 7th to the 9th October. The Mark shared between Royal Prince Alfred Brain Storm Hughes Foundation and Brain Tumour Alliance Australia Research Centre and the BTAA. As usual, the are pleased to be sponsoring one of the speakers, evening was a lot of fun, and was well supported Dr Terri Armstrong who is a senior investigator and leads by local identities, doctors and researchers and the Outcomes Research Section in Neuro-Oncology members of the brain tumour community. Well done Branch at the Centre for Cancer Research at the National to Melissa and her team on another great effort. Institute of Health in the United States of America. Visit With Senator Bilyk Terri will also speaking at the Patient Forum at the Cancer Council Queensland in Brisbane on Last month Steve Newman and I were delighted Sunday 7th October 2018. All readers are invited to to visit Senator Bilyk at Parliament House. Senator register for this opportunity to hear from some of the Billick chaired the Senate inquiry into Cancers with worlds experts on brain tumour treatment and care. a low survival rate. Stephen and myself spoke about Registration is available on the BTAA website and the need for more consistent support for brain travel grants are available for patients who need to tumour patients and carers. travel some distance to attend. Monthly E-News Following COGNO Dr Armstrong will also be speaking at educational sessions for the medical staff in both A big thank you to one of our Sydney committee Sydney and Melbourne. Details of these events members, Steve Newman, Steve has taken over and registration are available within this newsletter. the task of delivering our e-news and is producing The Sydney meeting on Wednesday 10th October it monthly. We welcome articles and news items from 5.30 until 8.pm, is called Shaping The Future that you would like distributed to our subscribers. Of Collaborative Care For Neuro Oncology and will Contact [email protected] be held in Wallace Freeborn Lecture Theatre Level 5, Kolling Building Royal North Shore Hospital. The Support Groups Melbourne education meeting is on Friday 2pm until A Support group is being reformed on the Gold Coast 5pm at the Oliva Newton-John Centre. in the near future. For more information contact A new annual COGNO poster Award, the BTAA Lynette [email protected]. Meanwhile the BTAA Sydney Williams Award, has been set up by BTAA Committee Support group at the Lifehouse and the BTAA ACT member Billy Williams in memory of his dear wife. The Support Group continues with monthly support meetings. funds for this award were raised by the Ghana Australia Thanks to the dedicated coordinators Alice Parsons, Association. The COGNO Award is for posters from Steve Newman, Gerry Tye, Pat Wynn and Billy Williams. A any discipline in research related to supportive care training program is also underway in conjunction with the for people with brain tumours. Many thanks to Julia NSW Cancer Council to offer support leader training to Robertson who assisted in its establishment. support group leaders across the country. (Continued on page 4)

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(Continued from page 3) It is hoped that this program will BTAA Promotes Support Groups increase the coverage and effectiveness of support groups nation wide. The BTAA is currently undertaking a training program to help train and develop support group leaders across the country. The program involves School Support leaders, or future support group leaders travelling to training in Sydney provided by the NSW Cancer Council. During November 6 people will join in Two schools had fund raising the one day program with more to follow in coming months. activities recently, The Sunshine Beach State School in Queensland Support Group Leaders. People will travel from as far as the Gold Coast to in memory of Adam Bruin. The join in the September program. other was inspired by a girl It is hoped that the support leader training program will improve the watching the publicity about the coverage of support groups to all Australian capital cities and larger regional Beanies For Brain Cancer she wrote towns and cities. We want to ensure that all Australian brain tumour patients to her Principal at the Mother Teresa and their families have access to nearby support in the future.The program School in Canberra requesting they has been made possible by $10,000 donated by the Tour de Cure, riding to fundraise. They had a hot chocolate Cure Cancer team and the training provided by the NSW Cancer Council. drink day. If you are currently running a support group in your town or city, or are interested in As mentioned in previous newsletter forming a group, you should contact Catherine Hindson on 1800 857 221 to discuss training a BTAA goal is that all people who opportunities are diagnosed with a brain tumour know where to access support and information. To achieve this we are seeking volunteers to help in all states to help distribute our brochures to Neuro wards, oncology and radiation units. If you wish to assist you can contact me [email protected] A huge thank you to Philip Steel Vice Chair for assisting me and also for producing this newsletter. Also a thank you to Pat Wynn our Treasurer for keeping our books perfect for the auditors.

Catherine Hindson Chair BTAA Canberra BTAA Committee

Executive members Public Officer:Tricia Berman Chairperson: Catherine Hindson Specialist Advisers: Denis Strangman, Matthew Pitt. Vice chairperson: Philip Steel Currently the following committee Secretary: Trish Berman members are looking after these Assistant Secretary: focus areas: Billy Williams Support: Catherine Hindson Treasurer: Pat Wynn Inform: Philip Steel Ordinary Committee members Represent: Susan Pitt Catherine is a retired registered Nurse whose daughter was diagnosed with a Anoplastic NSW Alice Parsons Connect: Janet Micallef Astrocytoma in 2010. Her daughter is now doing VIC Janet Micallef extremely well although Catherine recently lost her We are always looking for more husband Bill, also a great supporter of the BTAA, ACT William Williams helpers and representatives, from a different form of cancer. Catherine is a QLD Pam Hubner especially in regional areas keen birdwatcher, gardener and volunteers a great NSW Stephen Newman and states that currently do not deal of her time to the BTAA to ensure that every have representation. person with a brain tumour has all of the support NSW Michael Parsons and information that they need.

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Brain Cancer Biobank Critical For Research

Lucie Leonard was 34 when on their own none of the collections “The idea came from brain tumour she lost her seven-year battle will ever have enough tissue to patients wanting to donate their brain with brain cancer in 2012. Her power the research that’s going to after they’ve died and coming to us mother, Robyn Leonard, quickly make real breakthroughs”. and there was very little capacity became a passionate consumer around Australia to do this… I thought BCBA brings together 18 biobanks advocate for brain cancer research that’s absolutely hopeless, we need to across Australia in a virtual hub or and established a brain cancer do something.” network, giving researchers easy biobanking consortium to network access to the amount, quality and type The project is cutting edge, and will the fragmented collections of brain of tissue and associated data they allow researchers to grow cells in the tumour tissue stored in biobanks need to accelerate both paediatric and lab and study how the tumour has been Australia-wide. adult brain cancer research. able to adapt and evade treatment. She shared her story with the BTAA In August, BCBA launched a dynamic, “Being a consumer you can achieve a Support Group in Sydney in August. one-stop online shop to allow lot, there is no agenda. People get on “Biobanking is my passion. The tissue researchers globally to search and board with you because it’s all about samples are donations from patients apply for brain cancer biospecimens the patients and research,” she said. with brain cancer – it’s such a precious available across the entire national In addition to small charitable and gift, and I think it’s really undervalued BCBA network. philanthropic grants, the not-for-profit and I am on this mission to get support “We created the system so that group is supported by an annual Bike and funds for it”. researchers wouldn’t have to contend Ride for Brain Cancer. The group Robyn established Brain Cancer with mountains of paperwork and time raised $200,000 through the two-day Biobanking Australia (BCBA) in 2015 searching for tissues just to do their job”. 250km ride from Hornsby in Sydney to with a coalition of over 50 of Australia’s the Hunter Valley in March and will take BCBA is also working on a world- leading brain cancer clinicians, to the road again in 2019. first minimum clinical dataset for researchers and biobankers. The team brain cancer biobanking that will help “The ride happens each year on my is dedicated to providing researchers standardise the data that is collected daughters birthday, this is her legacy”. with the tissue they need to make real with the tissue within the network, breakthroughs in brain cancer research. Register to take part in the 2019 “There’s no point having tissue without Bike Ride for Brain Cancer: “It’s critical to research, obviously no data, it’s pretty much useless,” she told www.bikerideforbraincancer.com.au/ tissue, no research. But the situation the group in Sydney. in Australia when I looked at it was To learn more about the BCBA: so fragmented – researchers didn’t The consumer is always at the www.bcba.org.au actually know where the tissue was,” forefront of the BCBA activities, and she said. the team are working on a rapid autopsy pilot project that will collect the “So, my idea was – let’s pull it all brain of patients post-mortem, while together and realise the value of all the cells are still alive. these individual donations, because

Lucie Leonard was 34 when she lost her seven year battle with a grade 3 astrocytoma in 2012. Her mother Robyn Leonard quickly became a passionate consumer advocate for brain cancer research and was inspired to create Australia’s first brain cancer biobanking consortium by the work of consumer advocates in the USA. Her vision was shared by leading brain cancer clinicians, researchers and biobankers across the country, who joined her pursuit to expedite researchers’ access to tissue samples and data by networking and harmonising the disparate brain cancer biobanking operations Robyn with Lifehouse Support Group leader Stephen Newman Australia-wide. after speaking to members of the Sydney Group

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Peace of Mind Provides Here and Now Support

Peace of Mind Foundation was founded in 2013 by Bec Picone and Clint Matthews, brother and sister, after Clint lost his wife Caroline the day of her 32nd birthday. The foundation is made up of a small group of passionate volunteers and professionals whose primary focus is to provide ‘here and now’ support to patients, carers and families affected by brain cancer. The organisation is based in Geelong, Victoria and runs a brain tumour support group, offers to contact us to see how Peace of To remain up to date with all Peace of funded counselling and financial Mind may be of assistance. Mind events and services please ‘follow’ us on Facebook aid for affected families and a • Information and referrals small range of in home services to www.facebook.com/ help alleviate day to day stresses. • Phone support, Support groups, Peaceofmindfoundationaustralia/ social days and retreat weekends Nevertheless, Peace of Mind and visit our website Foundation has become most • Funded In home practical support www.peaceofmindfoundation.org.au well-known for its social days and (gardening, house cleaning, To donate, volunteer or find out more info incredible retreat weekends that it transport) runs every year; a Family Retreat, please call Bec Picone on 0411 382 457 or and a Women’s Retreat. • Funded Counselling [email protected] Founder/CEO, Bec Picone made • Wish Grants (small financial aid the decision to start running for emergency expenses or end these retreats after recognising of life wishes) the isolation that a brain cancer In April 2018, Peace of Mind diagnosis can have on families. hosted its 2nd Family Retreat for Launching an annual event that Brain Cancer and had 100 people brings brain cancer affected families of all ages join them for a weekend together from all over Australia was of adventure, fun and friendship. a way of helping support families Coming up soon in October will in their greatest time of need and be time again for Women’s Retreat help bridge that gap within the brain 2018. An already sold out event! cancer community. 60 ladies from across Australia will Since its formation the organisation be pampered, inspired and spoilt has provided financial support rotten as they arrive on the 19th of to over 60 Victorian families and October at the lovely ‘Waurn Ponds connected over 200 families Estate’ in Geelong. from all over Australia through its Peace of Mind is looking forward Retreats. Recently due to some to increasing their reach within grant funding from the Victorian the brain cancer community and State Government, Peace of Mind providing hundreds more families has been able to open back up the opportunity to be part of their their services to families all across memorable retreats and to access Victoria, and their retreat weekends their services. As well all know the welcome guests from every state brain cancer journey is challenging in Australia. We can provide and life changing, so having people support in the following areas, who truly understand is a real and encourage any brain tumour blessing. affected families living in Victoria

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National and ASM Convenor, Dr Mark Pinkham, International and the organising committee leaders in Research, have developed a vital and topical scientific program with the theme Treatment and Care of ‘Targeting survival: living well Gather at GOGNO with brain cancer in the era of precision treatments’. Additional National and International leaders international guest speakers are: in Research, Treatment and Care Gather at GOGNO • Professor Mark Gilbert - Established in 2007, COGNO whose research interests centre (Cooperative Trials Group for on developing new treatment Neuro-Oncology) is a network of strategies for patients with clinicians, researchers, consumer malignant primary brain tumours. representatives and allied health Professor Gilbert is Chief and professionals who are dedicated Senior Investigator of the Neuro- to increasing awareness, and Oncology Branch, National improving treatment and end- Cancer Institute. of-life care for patients with • Professor Susan Chang – brain tumours. The network Further details available on an internationally recognised currently includes over 650 health www.cogno.org.au leader in the field of neurological professionals and consumers malignancies, Professor Chang COGNO is committed to its from Australia, New Zealand and specialises in the treatment engagement with the community other countries. A principal role of adults with brain tumours and has formal involvement of COGNO is the development, including glioblastomas and of people who have lived the conduct and support of innovative meningiomas. She is Director experience of brain cancer, forming multi-centred brain tumour clinical of the UCSF Division of Neuro- the COGNO Consumer Advisory trials in Australia. Oncology as well as Director Panel (CAP). Our CAP team have The 2018 Annual Scientific Meeting of the UCSF Neuro-Oncology active engagement in COGNO (ASM) will be held in Brisbane, Gordon Murray Care Giver activities, mainly through clinical Australia from 7th-9th October. Program and Co-Director of trial development and review and This year the BTAA and the Mark the Sheri Sobrato Brisson Brain will be in attendance at the ASM Hughes Foundation will co- Cancer Survivorship Program. in Brisbane. COGNO is grateful sponsorship international guest to BTAA for the opportunity to speaker, Dr Terri Armstrong, share vital brain cancer scientific and medical research information presented at the ASM to the BTAA community after the Brisbane Conference, with contribution to a future BTAA newsletter from a CAP team member. We have been hearing about much activity since the Australian • Associate Professor Erik Government announced its Sulman– a radiation oncologist commitment to pledge $50 a senior investigator with the focused exclusively on the million to the Australia Brain Neuro-Oncology Branch of the treatment of patients with brain Cancer Mission through a Medical National Cancer Institute. tumours and internationally Research Future Fund in late 2017 The BTAA has initiated an annual recognised for his biomarker and COGNO will share what this poster award in memory of Lynette efforts, A/Prof Sulman is Chief of means for Australians with brain Williams, for a poster from any the CNS/Pediatrics Section at the cancer, now and in the future in discipline in research related to University of Texas MD Anderson a coming edition – so watch this supportive care for people with Cancer Center. space... brain cancers. The inaugural BTAA Lynette Williams Award will be presented during the Conference Dinner at the COGNO ASM.

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Facebook Brain Tumour Support Group Success Brain Tumour Support Group Australia was born out of the need to connect with other patients, carers and families going through Top cities for membership are: the impact of a brain tumour. No one understands the impact Melbourne, Victoria 203 quite the same as those who are Sydney, New South Wales 167 also “walking in the same shoes ”. Brisbane, Queensland 94 The group was created by Pauline Perth, Western Australia 59 Waring , whose husband has left temporal Oligodendroglioma Adelaide, South Australia 53 diagnosed in December 2010 Canberra, Australian Capital Territory 29 while having 4 children ranging Gold Coast, Queensland 28 in age from 8 to 12. Newcastle, New South Wales 18 The group is a closed group and Wollongong, New South Wales 14 was opened for membership in Geelong, Victoria 13 December 2013, and has now grown to over 1000 members with The group is a very supportive caring group. We have many members over 990 active members. from regional areas who travel to major cities for treatment and reviews. A closed group means that only Members are advised to always seek the advice of their own care teams those people who are members of as every brain tumour is individual and every patient even if they have the group can see the posts made the same tumour as someone else in the same location, may have very within the group and these will be different treatment needs or co-existing complications. visible to members only in their Between August 12 and August 18 2018 there have been 32 posts by news feeds. members with 565 comments and 1,068 reactions and 8 new members Membership is open to those with have joined the group. a brain tumour in Australia, or those From the original group new groups have grown administrated by caring for someone with a brain members of Brain Tumour Support Group Australia. These include: tumour, or with a family member • Brain Tumour Carers Support Group Australia open only to those or very close friend with a brain caring for someone with a brain tumour in Australia now or in the past. tumour or those who have lost someone close to them because • Warrior Space Brain Tumour Support Group Australia open only to those of a brain tumour. with a brain tumour apart from the group administrator who is a carer. Members come from all over • Australian Paediatric Brain Tumour Support Group open only to those Australia. We do have a small caring or having cared for a paediatric child with a brain tumour in Australia. number of members outside of • Brain Tumour Bereavement Support Group Australia open to those Australia such as New Zealand, who have lost someone to a brain tumour in Australia. UK and US, including Australians who have gone overseas for treatment or to be with family Pauline’s husband Scott was diagnosed members. with an oligodendroglioma just before Christmas in 2010. As they travelled between home and radiotherapy they often stopped in Alford Park in Gympie and during this time were able to watch these cygnets hatch and grow into swans. Checking on the welfare of the swans and feeding the ducks was a highlight in what was often a worrying and stressful time.”

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Cure Brain Cancer Foundation’s dedicated volunteers at Walk4BrainCancer

Cure Brain Cancer class projects strategically aligned Other organisations have also with the both the ABCM and its own joined the ABCM this year. Foundation mission: to increase brain cancer We welcome the significant Makes $20 Million survival to 50% by 2023. This investments made by Carrie’s Commitment to significant investment forms part of the Beanies For Brain Cancer, Foundation’s $20 million commitment Mark Hughes Foundation and the ABCM Roadmap to the ABCM over the next decade, Children’s Hospital Foundation. for which we are now fundraising. There are still significant funds to The launch of the Australian be raised, but these investments Brain Cancer Mission (ABCM) As part of our ABCM commitment, mean the long road to a cure will in October last year, was the the Foundation has funded two now hopefully be shorter. culmination of four years of new Infrastructure Grants to grow dedicated work by Cure Brain critical capacity in Australian brain The next stage of the ABCM is Cancer Foundation to achieve cancer research and three Innovation now taking shape. We need to greater focus and funding for Grants to bring novel, creative ideas ensure that the right projects are brain cancer from the Australian into the field of brain cancer. It also funded, and that they are funded Government. The Foundation jointly funded (with Isabella & Marcus quickly and efficiently. was aided in its efforts by Foundation), the first adaptive clinical With no meaningful increase in passionate ambassadors such trial for children with DIPG, called brain cancer survival in more as Dustin Perry and Senator BIOMEDE, giving these children new than 30 years, this is the best Catryna Bilyk. treatment options in Australia. opportunity we have ever had This ten-year, $100 million strategic In July this year, the Australian to change the world for people roadmap to double brain cancer Government announced further living with brain cancer. While the survival and improve patients’ funding for Zero Childhood Cancer, funding will undoubtedly help, quality of life was built on the back a nationwide personalised medicine the reality is that it is not nearly of increased awareness, ‘one voice’ program run by the Children’s enough. Now more than ever, we communication - with a dedicated Cancer Institute and Sydney need the community to continue to focus on children, targeted and Children’s Hospital. This additional fundraise, volunteer and advocate persistent advocacy, and the funding, provided as part of the for change. tireless efforts of people impacted ABCM, created a targeted brain by brain cancer, some of whom are cancer arm for the national clinical Former Health Minister, Greg Hunt, Cure sadly no longer with us. trial: Zero Childhood Brain Cancer, Brain Cancer Foundation CEO, Michelle for which Cure Brain Cancer Stewart, Andrew Forrest, Cure Brain The ABCM brings together Foundation provided $1.4 million Cancer Foundation Head of Engagement, Government, philanthropists, Barrie Littlefield at the launch of the seed funding for the pilot. and brain cancer organisations Australian Brain Cancer Mission under a common research strategy, increasing the Australian brain cancer research funding pool (through the $55 million Government commitment) and stimulating increased collaboration across states and territories. Since October last year, Cure Brain Cancer Foundation has committed more than $3.3 million to world-

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New resources for brain tumour patients It’s okay to ask Tricia Burman Questions to ask your healthcare team about BTAA will shortly be releasing two new resources for your brain tumour and treatment brain tumour patients. The new resources will assist all newly diagnosed brain tumour patients to ask their health team questions about what to expect as they move along the treatment journey. Importantly, the new resources will be available in a range of languages so that every patient can use them. This is the first time that BTAA has produced brain tumour resources in different languages and we are pleased to assist a wider range of cultures to understand the brain tumour journey. One resource is called ‘It’s Okay to Ask’. It is a short booklet of 36 pages that sets out questions for patients to consider in approaching their treatment. The questions are grouped under the following headings: Diagnosis, What to expect, Symptoms and Changes, the Healthcare Team, Support, Treatment and Management, and After Treatment. The Supporting People with a Brain Tumour project is a Cancer Australia Supporting people with cancer Grant initiative, funded The second resource is called ‘Your Brain Tumour by the Australian Government. Pathway’. It shows in a diagram the various steps of the brain tumour journey including diagnosis and treatment. Also, it is quite unique as it provides patients with a profile of, and contact information specific to their particular Tricia is a retired senior brain tumour. The intention is that this document can be public servant and brings completed when the patient visits their surgeon and/or a wealth of knowledge other medical professional after diagnosis. The resource and skills to the BTAA. will be available in over 10 languages to enable all patients She started volunteering for the BTAA through her irrespective of their cultural background to have their own connections with other BTAA brain tumour profile and treatment in hard copy. members. In the times she is not working for the BTAA, BTAA will be advising the date of launch of the two new she loves to paint and travel, resources in the next few months. Our regular E-News will and enjoys entertaining circulate details of the launch. family and friends. Tricia would like to ensure that all BTAA would like to thank Cancer Australia for its help in producing brain tumour patients and these two resources. The Supporting People with a Brain Tumour carers have access to the project is a Cancer Australia Supporting people with cancer Grant support and information they initiative, funded by the Australian Government. need across Australia.

Brain Tumour Forum - Topics include: • Be your own best advocate 7th October 2018 • Latest in treatment for brain tumours • Exercise as medicine Brain Tumour Alliance Australia and Cancer • Managing cognitive deficits and fatigue Council Queensland invites you to attend a free forum for people diagnosed with • Patient and carer group sessions brain tumour and their families and friends. When: Sunday, October 7, 2018 During this event participants will have Time: 10am – 2:30pm the opportunity to gain information and Where: Cancer Council Queensland guidance on living well with the diagnosis, as well as share experiences in a safe and 553 Gregory Terrace, Fortitude Valley supportive group environment. For full details and to book your seat, visit the BTAA webpage at btaa.org.au

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Carers play an essential role in understanding mental and behaviour and receive the extra support and looking after people diagnosed changes; making choices on fertility education package, and the other with high grade gliomas. Our and sexuality; lifestyle choices such half will continue to receive the research team has previously as diet, exercise and complementary usual support and education which found that many carers are very medicines, and end of life care. is available through the patient’s distressed and do not feel well When the nurse identifies these treatment centre. Both groups of prepared for their caring role. unmet needs, he or she can give carers fill in questionnaires so that Cancer Australia has funded this extra information, support, education we can understand and compare randomised clinical trial which and refer to someone else who their quality of life and emotional will study whether a nurse-led can help in more depth, if needed. health. Healthcare systems will also education and support program Because things can change quickly want to understand whether extra can help carers prepare for when caring for someone with high support in the short term reduces caring, improve their quality of grade glioma, the nurse calls each healthcare costs in the long term – life, reduce distress, anxiety month to check in on new concerns for example, by reducing hospital and depression; and decrease and is also available for ongoing admissions through supporting unplanned use of health services. phone support. carers better. This study is also looking in detail at the economic The carer education and support Although it seems obvious that costs and savings of the support program includes a telephone extra support will help carers, to package, which is why we are assessment of the carer’s needs, persuade Medicare and health asking people in the study to keep a nurse home visit, a personalised services to include this type of track of healthcare costs, hospital printed resource file tailored to the program as routine, we need to visits, and allied health visits. specific needs of that carer and also prove that it helps. The only patient, and ongoing telephone way to do this is to compare two To date, 126 participants from WA and 20 support for 12 months. Some groups of similar carers, who from NSW have joined the study and are examples of carers needs include do or do not receive the extra helping to answer this important question. encouraging them to care for support. To understand whether We are keen to recruit more participants themselves (mental and physical the carer support program truly in WA and NSW and welcome enquiries health); help communicating with makes a difference to carers, half about the study via email: doctors; help understanding the carers who participate in the [email protected]. treatment; information on study are randomly assigned to understanding physical symptoms; have contact with the ‘carer nurse’

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Research roundup from the International Brain Tumour News

All BTAA subscribers automatically Combination immunotherapy Study gives direct evidence receive a comprehensive world shrinks melanoma brain for the origin of glioblastoma wide up to the minute technical metastases, phase 2 study tumours and medical update in the concludes A research team from South Korea International Brain Tumour Results from a phase 2 clinical has published evidence in the Alliance e-news. A link to all of trial of the checkpoint inhibitors journal Nature describing how these articles in the IBTA e-news ipilimumab and nivolumab in brain stem cells mutate to cause can be made through the BTAA patients with melanoma skin cancer recurrent glioblastoma. website. Recent posts include: that had spread to the brain found Researchers develop drug- Clinical trial of nivolumab that the therapy had “clinically carrying microparticle treatment immunotherapy in elderly meaningful” effects. to target IDH1/2 mutated glioblastoma patients underway Large collection of brain tumour gliomas in Australia data now freely accessible to First FDA-approved trial of A randomised phase 2 clinical researchers worldwide focused ultrasound to open trial of the immunotherapy A database of brain tumour blood-brain barrier announced agent nivolumab in combination biomedical data (the “Rembrandt” with standard temozolomide PET scan radiotracer uptake brain cancer dataset), which chemotherapy, compared to in glioblastoma may predict contains information on 671 temozolomide alone, in elderly (65 survival, study finds adult patients collected from 14 years+) glioblastoma patients has contributing institutions from Clinical trial results of commenced at the NHMRC Clinical 2004-2006, has been made freely engineered poliovirus for Trials Centre in Sydney, Australia. available to researchers worldwide. glioblastoma: The trial, also known as NUTMEG (NivolUmab and TeMozolomide Large study finds no link Studies links radiation therapy vs Temozolomide alone in newly between exposure to high- in paediatric brain tumours to diagnosed elderly patients with frequency electromagnetic impaired memory formation and Glioblastoma), aims to recruit 102 fields at work and brain tumours hormone deficiencies patients across up to 18 sites in A large multinational Genetically engineered ‘mini- Australia and the study may be epidemiological study has brains’ developed to simulate extended into a larger phase 3 found no association between brain tumour formation trial, depending on results. Visit occupational electromagnetic field the COGNO website for further Phase 3 trial of Tocagen’s Toca (EMF) exposure and glioma or information on this and other trials 511 & Toca FC in recurrent meningioma diagnosis, according being coordinated in this area. high grade glioma to continue to results published in the journal without modification after Environment International. Epigenetic analysis of interim analysis glioblastoma may predict Study finds that brain outcome and aid precision Phase 1 trial of Moleculin’s tumours in children with medicine, study finds WP1066 in glioma and brain neurofibromatosis 1 are more metastases opens for enrolment A research group at the CeMM common than previously Research Center for Molecular thought AIVITA Biomedical announces Medicine of the Austrian Academy initiation of the first clinical Using new radiologic criteria, of Sciences, analysed epigenetic site for ROOT OF CANCER a study of the brain MRI scans markers (DNA methylation) in more glioblastoma trial of children diagnosed with the than 200 glioblastoma patients, common genetic syndrome focusing on the changes that neurofibromatosis type 1 (NF1) occur during glioblastoma disease revealed a frequency of brain progression. tumours considerably higher than previous estimates. Study identifies that ‘missing’ T-cells in glioblastoma patients are within bone marrow

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Forums Mark Brain Cancer Action Month

Susan Pitt Dawn Hutley, Catherine Hindson, May was Brain Cancer Action Marina Kastelan, Kim Pearce, Prof Month and this was marked by Andrew Cole and Jo Marx. forums in Geelong, Newcastle, The Melbourne Forum was held at the Melbourne and Sydney. Olivia Newton John Cancer Wellness Organisations such as the Brain and Research Centre in Heidelberg, Cancer Group (Formerly NSW where the focus was again on new Society for Neuro Oncology), developments in Brain Cancer Clinical The Cancer Institute of NSW, Trials, National Disability Insurance Cancer Council NSW, Cure Brain Scheme access and support and Cancer, and the BTAA in Sydney, ways of living with brain cancer. Many Mark Hughes, Kiralee Hughes and The Mark Hughes Foundation thanks to Dianne Legge, the Brain Catherine Hindson at the Newcastle Forum in Newcastle, Peace of Mind Tumour Support Coordinator at the Foundation in Geelong, and the ONJ Centre for organising yet another Olivia Newton John Wellness and fantastic event. Research Centre in Melbourne worked to organise these The Peace of Mind Geelong event important events. focused on developments in personalised brain cancer treatment Each forum organised research and research, the practical leaders and local doctors and challenges of cancer, such as medical professionals to give returning to work, travel insurance presentations and take questions and accessing early superannuation, about important advances in palliative care and personal stories BTAA Committee members, Stephen treatment and care, as well as some from patients and carers. Another Newman, Alice Parsons, Catherine Hindson more straight forward information and Philip Steel, at the launch of The Brain great effort by Bec Picone and the Cancer Group for the newly diagnosed. All forums Peace of Mind team. were well attended showing the continued demand for these types of events. A number of families received BTAA travel grants to allow them to travel to the Sydney and Melbourne events. At the Mark Hughes Newcastle Forum which I attended, more than 100 patients and families had travelled from across the North East of NSW, from as far as Inverell in the BTAA Chair Catherine Hindson, Dr Dr Liz Hovey, always passionate about West and Coffs Harbour in the North Johnathon Parkinson and Dr Michael brain tumour treatment. Rodriguez at the Sydney Brain Cancer to hear the excellent speakers at the Action Month Forum event. Interest was particularly high in gaining admission to clinical trials in rural and remote locations. The Sydney Forum was also well attended and was led by Dr Johnathon Parkinson and Dr Susan Pitt is a founding member of the Elizabeth Hovey, who once again BTAA and looks after the “Represent” area of the organisation. Susan’s wealth took time out from their busy of experience and tireless efforts in the schedules to support the event. brain tumour world since her son Matt Speakers and panellists included was diagnosed with a brain tumour in Dr Jacob Fairhall, Dr Eng-Siew 2009 has been a mainstay of the BTAA. Koh, A/Prof Helen Wheeler, A/Prof Susan is also active in other cancer organisations and can be found at the Kerrie McDonald and Dr Michael helm of the Dragons Abreast dragonboat Rodriguez. After a lunch the focus team at weekends was on support. Speakers included

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Grant Supports BTAA Member Neuro Sponsorship Oncology Nurse & Educational Practitioner Grants Pat Wynn BTAA offers two types of Transitional Neuro Oncology sponsorship to our financial Nurse Practitioner at the Royal members. North Shore and Royal North Shore Private hospital. Marina Educational Grants are available Kastelan was recently supported to our financial members who are by the BTAA Travel Grants nurses and other allied health Program to attend the Australian professionals, or researchers, Neuroscience Nurses Association with a particular interest in supporting people living with brain conference on the Gold Coast. Marina Kastelan at the ANNA Conference tumours. Grants are available Marina educates, supports and to attend events like COGNO in assists patients and carers through Australia and SNO, ISPNO and the confusing pathway of brain tumour ASNO internationally. Download the management. She works closely with guidelines from our website. members of The Brain Cancer Group ( formerly SNOG) in post-operative co- BTAA reimburses expenses up to ordination and assessment of newly $600 for a national event or $1,500 diagnosed and recurrent primary for an international event, upon brain tumour patients and adjuvant presentation of receipts for travel, management of primary brain accommodation or registration. tumour patients with ongoing post More costs may be available at the discharge and outpatient support. Pat joined the BTAA after looking for discretion of the BTAA committee. support for her husband after he had Marina also provides additional Thanks to the Nicola Scott holistic community support with his third brain tumour. She discovered the BTAA website and started Educational Trust for the over-the-phone assessment and attending the Canberra Support group. educational grant funding. triage is also attended. Pat’s experience in book keeping and accountancy helps manage BTAA also provides grants to our Nurses, researchers and other the finances of the BTAA. Pat loves financial members who provide health professionals can apply for spending time with her grandchildren peer to peer support. Financial travel grants under our educational and hopes to represent the BTAA at assistance is provided to enable conferences to ensure that the BTAA grant program. Guidelines can be our members to attend the downloaded from our website. gets the recognition it needs to be able to support those in need. BTAA National Summit, held in conjunction with COGNO. e.g. Those who run support groups, those who volunteer for the Cancer Donations - Thank You Connect Service, those who Sharon Leigh-Hazel, John & Raechael Thorpe, Helen and Barry manage a dedicated online support Walls, Peter Scott, Michael Scott, Harriet Brown page. Mel Johnson and “Mel Goes Grey in May” Grants are on a case by case basis and depend on the distance to be The Sunshine Beach State School in Queensland in memory of travelled, other income sources Adam Bruin. The other was inspired by a girl watching the publicity about etc. These grants are paid for out the beanies for cancer she wrote to her Principal at the Mother Teresa of BTAA’s donation revenue. Thank School ACT requesting they fundraise. They had a hot chocolate drink day. you to our donors. Norman Disney It is easy to become a financial member of Vivien Deed BTAA - Visit: www.btaa.org.au Email [email protected] TKW Health cc [email protected]

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Members Meet With Senator Bilyk Mel Goes Grey Success Committee members Stephen Newman and Alice Parsons Catherine Hindson recently met with Senator Catryna Bilyk to promote the need for support for brain tumour patients, carers and families. Senator Bilyk has been a long time supporter and advocate for the brain tumour community and was the chair of last year’s Senate Select Committee on Funding for Research into Cancers with Low Survival Rates with a focus on the impact of health research funding models on the availability of funding for research.

Steve Semmens, Melissa Johnson, Sharyn Semmens and Stephen Harper at Bathurst RSL Club. Bathurst brain tumour survivor and fund raising power house, Mel Johnson has once again hosted a fabulous “Mel Goes Grey” dinner. The event, held at the Bathurst RSL, was very popular and received great support from the local business community. Mel says that the aim for the dinners is to raise awareness and to raise funds for much needed research, as well as being a celebration of life. This year over $10,000 was raised. Funds are used to support The Royal Prince Alfred Brainstorm research centre and the BTAA. Stephen Newman, Senator Bilyk and Catherine Hindson at Parliament House Well done to Mel and her dedicated team of supporters for Senator Bilyk is also a brain tumour survivor their outstanding work in the brain tumour community. herself and her experience with brain tumours has motivated her to raise funds for research to improve the survival rate for cancer. To date, events she has organised have raised over $120,000 for Cure Brain Cancer Foundation. Senator Bilyk wrote on her Facebook page after the meeting: “It was a pleasure to meet with Stephen Newman and Catherine Hindson of the Brain Tumour Alliance Australia (BTAA) Committee. Catherine is the Chair of BTAA, and it was lovely to catch up with her again.

Stephen is overseeing the development of a new Dr Michael Buckland and Dr Kimberly Kaufman from BTAA website, with the aim of improving BTAA’s RPA Brainstorm sign a laboratory coat for auction. engagement with the brain tumour community. He has had a brain tumour himself, and is committed to the cause. Alice’s thirty year old son was recently diagnosed with a brain I’m delighted that he presented me with a copy of tumour. Alice is a wife, mother of his novel, Collision, as well as sharing with me his four, author, editor, troubleshooter, ideas about further support for people who have chauffer, custodian of bees survived brain tumours. and chickens, dog walker and bookworm. Alice hopes that Keeping in touch with people who are working to through her participation in the help their community is one of the most rewarding BTAA she can contribute empathy aspects of my work as a senator.” and positivity to those on the brain tumour journey.

Committee member, Alice Parsons speaks at Mel’s event

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