brain cancer action week edition · u 2016 ispno international symposium on paediatric...

Brain Cancer Action Week Edition1 -7 MAY 2016 This newsletter produced with the assistance of

funds from the Vanzwan Accounting Plus Golf Day

BTAA.ORG.AU ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221

Participants in the BTAA National Summit, Brisbane, IBTA Week, 2015

Letter from the Chair

Diary Dates

New Grant

Support News

BTAA Educational Grants

RCD Brain Week

POM Retreats

Julia’s Story

Research News

Congratulations Diana

Accessing New Medicines

Staying connected

Fund Raising

Diary Dates

Thanks

Contacts

Barwon HealthBlackwood 8Brain Tumour Alliance AustraliaBrainstormCabriniCancer Council NSWCancer Council VictoriaCancer Institute NSWCure Brain Cancer Foundation

Monash Health

Olivia Newton-John Cancer and Wellness Centre.

The Royal Melbourne Hospital

St Vincent’s Hospital Melbourne

Sydney Neuro-Oncology Group (SNOG)

Yellow Diamond Foundation

The Brain Cancer Action Week 2016 forums in Sydney and Melbourne on 6 May are supported by:

INSIDE THIS ISSUE

Audience photo at the BTAA, CCQ and CBCF Patient Forum, Brisbane, IBTA Week, 2015

The Australian representatives at the IBTA Summit, Barrie Littlefield, Sally Payne and Susan Pitt. Sitges, Spain, 2015

Mark Dalliston and Susan Pitt receiving a cheque from Michael Allen EGM, Corporate Services and Michelle Gregory, Social Club Committee member at the Engineers Australia morning tea.

Music students from the Swan Valley Anglican Community School who gave their time to play during the RCD Brain Week lunch


BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015

In this issue we announce great news about a grant from Cancer Australia. Our expanding team of volunteers at BTAA are also excited by a couple of big events coming up this year.

Events

The first event is Australian Brain Cancer Action Week, which runs from 1 – 7 May 2016. During this week, the focus is on raising awareness of the impact of the disease on our community and the need for more research on therapies. It is also a time to concentrate on the support needs and existing services available for patients and carers.

BTAA will be represented at the two free patient and carer forums on Friday 6 May, one in Sydney and one in Melbourne, and look forward to meeting many of you there.

The programs for both events are being finalised at the time of writing but will be available here: http://www.btaa.org.au/events

BTAA will have copies of the QUT resource “It’s OK to Ask” at the forum as well as a range of other resources on display.

There are other events planned for the week, including a fashion parade organised by Dainere’s Rainbow in Canberra on 1 May.

This year the Cooperative Trials Group for Neuro-Oncology (COGNO) 2016 will be held from 11 – 15 September. BTAA will be supporting the brain tumour supportive care nurse guru, Mary Lovely, to visit Australia for COGNO 2016 and she will visit New Zealand on the return journey to San Francisco. Mary’s full title is Associate Adjunct Professor Mary Lovely Ph.D., RN, CNR. Mary is the First Author for Clinical Nursing Practice Guidelines for Adult Brain Tumor Patients through the American

Susan selfie in Sitges, IBTA Summit, 2015

Association of Neuroscience Nurses Read more about COGNO including the keynote speakers http://www.cogno.org.au/content.aspx?page=cognoasm-home2016

BTAA will be holding our 4th National Summit in September in conjunction with COGNO. The date will be confirmed soon by BTAA.

The dates for International Brain Tumour Awareness Week have been announced by the International Brain Tumour Alliance (IBTA) as from 22 to 29 October. Start planning now. Perth-based Committee Member Diana Andrew is coordinating her second brain tumour community lunch hosted by Professor Anna Nowak during the week.

It was my privilege to attend the Second IBTA Summit in Sitges, Spain during IBTA Week 2015. There is an excellent summary of events held around the work on the IBTA website, including our Australian Summit, See all the events around the world here http://theibta.org/awareness-and-walk-2015/

BTAA also supported the Youth Cancer Summit and AYA Oncology Congress held in Sydney in December 2015.

With your support the BTAA volunteer team is growing. We have spent some time developing a vision statement, principles and establishing subcommittees, based on a three-year work program. We have also

LETTER FROM THE CHAIR

reviewed our policies on educational grants for researchers and allied health professionals and developed a sponsorship plan. This plan is a lot of work for a volunteer organisation and is keeping us focused.

We have set up subcommittees along these lines:

SUPPORT Support the needs of Australians affected by brain tumours through our services, resources and programs.

INFORM Develop and provide high- quality information in a range of formats including information that can empower participation in decisions about treatment and care

REPRESENT Advocate on behalf of Australians affected or at risk of brain tumours to ensure we hear their voices, and for improved care and research

CONNECT Connect people and organisations in the brain tumour community

Our Support Team will be seeking consumer input on many projects, including interventions in the end stages and on grief support for those who have lost a loved one.

Keep up to date on events and resources by looking at our news page on our web site www.btaa.org.au and/or following us on Facebook.

If you are thinking of running in one of the large runs this year please consider running for BTAA. Find us on the Everyday Hero Channel. City to Surf race registration opens on April 20, 2016. $25 allows us to provide a pack of information to a newly diagnosed adult and their family. $75 enables us to provide a paediatric pack, including a small gift for the child and any siblings.

Thanks, all. Email your views to [email protected]

Susan PittChair, BTAA

http://www.btaa.org.au/events/13/brain-cancer-action-week-sydney-forum

https://nfp.everydayhero.com/au/brain-tumour-alliance-australia-btaa

BTAA.ORG.AUABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221 3


DAIRY DATES 2016

MAY 2016 Brain Cancer Action Week, 1 – 7 May. Various events, forums on 6 May in Sydney and Melbourne. See BTAA events page.

Mel Johnson Goes Gray in May for BTAA and RPA Brainstorm, 28 May Bathurst Panthers.

JUNE 2016 ISPNO (International Symposium on Paediatric Neuro-Oncology) 12-15 June in Liverpool, UK.

SNO (Society for Neuro-Oncology) 1st Meningioma Conference, 17-18 June in Toronto, Canada. SNO is jointly organized by the Society for Neuro-Oncology and the Consortium on Meningioma in Toronto. JULY 2016 ASCO (American Society of Clinical Oncology) 2-7 July in Chicago, Illinois.

SEPTEMBER 2016 COGNO, 11 – 15 September, Sydney. BTAA will be supporting the Mary Lovely’s visit to Australia for COGNO 2016, and she will visit New Zealand on the return journey to San Francisco. Read more about COGNO including Mary and the other keynote speakers here

Curefest Australia 25 September, Sydney.

OCTOBER 2016 International Brain Tumour Awareness Week, 22-29 October 2016.

NOVEMBER 2016 SNO 2016, 17-20 November, Phoenix, Arizona, USA.

COGNO DATES 2016

BTAA will be supporting the brain tumour supportive care nurse guru, Mary Lovely, to visit Australia for COGNO 2016. Mary will visit New Zealand on the return journey to San Francisco.

Mary’s full title is: Associate Adjunct Professor Mary Lovely Ph.D., RN, CNR. Mary is the First Author for Clinical Nursing Practice Guidelines for Adult Brain Tumor Patients through the American Association of Neuroscience Nurses.

Associate Adjunct Professor Mary Lovely Ph.D., RN, CNR.

CANCER AUSTRALIA GRANT | SUPPORTING PEOPLE WITH CANCER

BTAA is thrilled to be one of four organisations awarded Cancer Australia funding to improve the coordination, accessibility and development of quality cancer support initiatives for people with poorer cancer outcomes. Our three-year project will develop information resources to help brain tumour patients improve the health and quality of life outcomes for people from culturally linguistically and diverse communities, including Arabic, Greek, Chinese, Vietnamese and Easy English.

Our partner organisations include but are not limited to Grey Matters Victoria, the NSW Oncology Groups – Neuro-Oncology and Cancer Voices Australia.

BTAA Secretary Tricia Berman is developing the detailed project plan, which includes a review of existing resources and focus groups in the first year.

For more information email [email protected]

CUREFEST AUSTRALIA FOR CHILDHOOD CANCER 2016

Congratulations to Amanda Griffin who has arranged a fabulous venue for the 2nd Curefest Australia - The iconic Sydney Opera House - on Sunday 25 September 2016.

Amanda Griffin at the BTAA Summit, Brisbane, 2015.

Amanda has secured the Northern Broadwalk for the main event on the Sunday, and this year we will be introducing a candlelit vigil to take place on the evening of Saturday 24 September on the forecourt of The Opera House.

www.curefest.org.au/eventdetails.

http://www.cogno.org.au/content.aspx?page=cognoasm-home2016



The Centre for Community-Driven Research have built special expertise in the field health system navigation and recently commenced a Brain Cancer Support Service for patients and their families.

This national service is coordinated by a centralised cancer nurse specialist who is available on a dedicated national phone line providing care coordination for patients, caregivers and nurses caring for brain cancer patients around Australia. It is not a ‘helpline’ per se, rather patients and their families set an appointment with our nurse to develop a care plan so that they can access all the available services that our health system has to offer, and anticipate the needs and challenges they will face.

To access the service email [email protected] or call 13004ANURSE (1300 42 68 77). More information is available at www.13004ANURSE.org

We will also implement a Nurse Network Program with nurses employed at cancer treatment centres around Australia. We offer these nurses education opportunities, and personal and professional support delivered through peer-to-peer mentoring, quarterly in-service training focusing on best practice cancer care and referral to existing services (including clinical trials), and an annual cancer nurse retreat/seminar. By up-skilling existing nurses, this model offers a cost-effective way to ensure that at each cancer centre, there are at least one or two nurses who understand the clinical pathway of brain cancer patients.

As part of the program, we also aim to conduct a full research evaluation to learn better clinical pathways, adherence to Optimal Clinical Pathways and the care needs of patients with brain cancer to inform future clinical care.

New Brain Cancer Support Service

Provided by Catherine Holliday

Robert Connor Dawes Foundation Brain Week 2 – 6 May

By Harrison Jones

In just over a month, ‘Brain Week’ is returning to schools bigger and better than ever!

Since 2014, the Robert Connor Dawes Foundation has been running the annual ‘Brain Week’ fundraising event in schools around Australia (and even one in New Zealand!). Inspired by the remarkable spirit of high school student Robert Connor Dawes, who passed away of Brain Cancer in 2013, ‘Brain Week’ encourages everyone to spread the word that the brain is where the heart lives.

Brain Week 2016 will run from the 2nd to the 6th of May. Schools who sign up are encouraged to sell the official merchandise (badges, ribbons and wristbands) for $2, host fun activities and find their schools best Rubik’s Cuber! The highlight for many is the ‘Go Grey in May Day’, a grey themed casual clothes day on Friday the 6th of May – it’ll be the comfiest day of the year! There’s never any pressure with Brain Week, do as much or as little as you can.

Head to www.brainweek.com.au to find heaps of info and inspiration, and to register!

Students Go Grey in May Day for RCD.



SNO 2016

By Danette Langbecker.

BTAA provided a Nicola Scott Educational Grant to enable Danette to travel to the 20th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology.

Danette is a Research Fellow, Supportive & Palliative Care Research Group, Institute of Health & Biomedical Innovation, Queensland University of Technology, Brisbane. She writes:

I was thrilled to have the opportunity to attend the Society for Neuro-Oncology 20th Annual Meeting and Education Day in San Antonio, Texas with the support of BTAA. It was a massive conference, attended by over 2,200 delegates, with I am pleased to say, a recognisable Australian group of clinicians and researchers. Being such a big conference, there were sessions on all different aspects of neuro-oncology pertaining to drug treatments and surgical approaches, but also (as is my focus) on supportive care and quality of life.

The first day of the conference was the Education Day, which discussed modifiable factors that may affect patient outcomes such as diet, physical activity and sleep, for both adults and children with brain tumours. Although there has been a lot of research into these factors in other cancer types, particularly breast cancer, we are just beginning to see research being done on the influence of these in the brain tumour area. The sessions showed the huge amount of potential for interventions and changes to practice to try to improve both cancer outcomes and quality of life, and I am very interested in building research in this area.

The main conference then expanded on this with several sessions discussing quality of life issues. It was excellent to see a recognition that all studies need to consider the impact of treatments on quality of life, symptoms and other patient-reported outcomes in addition to survival, and we had some good discussions on what outcomes should be collected and the best ways to collect this data. The latest results were presented from studies examining specific issues which are important to people with brain tumours and their families, such as fatigue, cognitive functioning and the experience and needs of family caregivers. Some novel findings were presented, for example with regard to the quality of life of people with brain tumours in developing countries and the impact of glioma on pregnancy. I had the opportunity to meet with other researchers in this area and discuss ideas for future studies and how we may be able to work together for a common goal of improving brain tumour care.

So I have now returned to Australia with extended knowledge, some great connections and a renewed enthusiasm for my research. This can be a challenging area in which to conduct research because brain tumours are rare, but I think there is such a need for it and opportunity to make a difference – I couldn’t imagine doing anything else! Many thanks to BTAA for providing some financial assistance to make this trip possible.

Danette Langbecker Twitter - @DHlangbecker

BTAA Educational Grants

BTAA is interested in hearing from allied health professionals or researchers interested in funding assistance to attend national and international professional events. Grants of up to $600 for domestic and $1,500 for international events are available for BTAA members. BTAA thanks the family of the late Nicola Scott for enabling us to provide this assistance.

Get along to COGNO, ASCO, ISPNO, SNO, with some assistance from BTAA. See the dates of these events in this issue. BTAA Treasurer Catherine Hindson is happy to discuss this with you.

Email [email protected] for a copy of our revised guidelines.

The late Nicola Scott. www.btaa.org.au/nicola-scott.html



Peace of Mind Foundation RetreatsBy Rebecca Picone

The Peace of Mind Foundation provides practical assistance to people diagnosed with brain tumours, including financial assistance. The Foundation is run by Bec and her brother Clinton, based in Geelong.

Ladies First

On October 10th - 11th 2015, Peace of Mind Foundation hosted the first ever ‘Women’s Retreat for Brain Cancer’ in Torquay, Victoria. Over the two days, we were honoured to have the company of 40 female brain tumour patients or carers who came from all areas of Victoria and NSW to be at the retreat. On arrival, every lady received their giant gift bags all proudly donated by local Torquay businesses. Our guests spent the afternoon enjoying the activities in our three separate conference rooms - The Pamper Room (hair, make-up, massage and nails), The Photography Masterclass Room, and The Smash Book Journal Making Room.

On a Saturday evening at our cocktail dinner, all the ladies looked incredibly glamorous after their pamper session, and we were privileged to hear the life stories from two very inspiring guest speakers - Trisha Broadbridge and Moira Kelly.

On Sunday, we set off via bus to catch the Searoad Ferry across the bay from Queenscliff to Sorrento (and

to most of the ladies amusement we were also joined by over 600 men in lycra cycling as part of the ‘Around the Bay’ bike ride). Sunday was a great day of soaking up the sun at the gorgeous Peninsula Hot Springs in Fingal, accompanied by a delicious picnic lunch.

Our retreat may have only lasted two short days, but I can positively say that lifelong friendships were formed and due to the wonderful women who attended, and over 30 fabulous lady volunteers the retreat was a successful endeavour that we shall certainly do again. But for now, 2016 is the men’s turn!!!!

Men’s Turn

On Saturday 8th October 2016 we will be hosting the first ever ‘Men’s Retreat for Brain Cancer’ in Geelong, Victoria. Any male with the diagnosis of a brain tumour is a carer of a loved one or has lost a loved one to a brain tumour is invited to attend.

This retreat will be an all-day event, culminating in a traditional Aussie Blokes BBQ dinner! I cannot confirm the full list of activities, at this early stage, I can provide you with a few clues....Sport, motorbikes, cars, beer, inspiring guest speakers and, of course, it would not be a great Men’s retreat if we didn’t include a Pub Lunch!

Full details and ticket sales will be released online mid to late April via our website. www.peaceofmindfoundation.org.au

Thanks, Bec and Clinton.

Fun and laughs at Saturday night Cocktail Dinner

Some of the ladies soaking up the sun in the hilltop spa

Group Shot on arrival at Peninsula Hot Springs



Julia Roberston is a committee member based in Brisbane. Julia volunteers for BTAA and also helps the Peace of Mind Foundation, volunteering at the Women’s Retreat and organising Tunes for Tumours. She also studies and BTAA asked her to tell us about what she studies and why. Julia writes:

Following my brain surgery, I had some memory deficits. I was not sure if my ‘pre-surgery’ skills would still be available to me so I decided to do some study to upgrade my skills so that maybe I could secure a job. To test myself and see if I would be able to remember anything long enough to be examined on it, twelve months post op I enrolled in a Dual Certificate III in Business and Business Administration at my local TAFE and was told that I should make contact with Disability services so that I could get assistance should I require it. I was horrified. The word ‘Disability’ grated on me. I did not think of myself as ‘Disabled.’ I bit the bullet and signed up. I completed my Certificate III without assistance and it gave me a real sense of achievement. ‘Disabled,’ not I!

I then decided to try a Certificate IV Adult Tertiary Preparation. It is a gateway program into University. My idea was that if I could make it to University and beyond I would like to get into brain tumour research. I signed on with Disability Services as I had done the previous year. It still grated. I did not like being classified as disabled. I did, however, need help. I asked for it, and DS gave it to me. I felt like I was somehow cheating because other people in my course were not receiving the same support. It took a little while, but I eventually got it through my head that it was okay to ask for the help I needed and that it was levelling the playing field. The things for which I was receiving help were things that other people had no problem. Rather than me ‘cheating’ I was giving myself a chance to operate at the same level as everyone else. I managed to pass all ten subjects with honours and was offered a spot in a Bachelor of Clinical Science. I was thrilled to receive the offer. My friends, family and lecturers were all very proud of me for putting in the effort, pushing through the roadblocks and making it through.

I started the Bachelor of Clinical Science and quickly found that the three subject course load was too much. I dropped back to three and things went a lot more smoothly. I had great support from disability services at University. I had overcome my fear of the label ‘Disabled’ and looked at it more as ‘enabled’ by using the services available; I was ‘Enabling’ myself to perform on a more level playing field. After a period of illness, I had to take some time out.

I have now returned to study but have transferred over to Bachelor of Psychological Science. I may not be able to help find a cure; I can, however, work towards Neuropsychology and help the patients and their families to work through this brain tumour journey.

Thanks, Julia and good luck with your studies and your support for our cause.

PATIENT STORIES

BTAA Committee member Julia Robertson

Julia Robertson, left, pictured with Dr. Kerryn Hayman, one of Julia’s lecturers at the local TAFE.



Congratulations Diana | COGNO CAP member By Susan Pitt

BTAA is pleased to have our Perth based committee member, Diana Andrew, on our committee. Diana is a volunteer for Neuro-Oncologist, Prof Anna Nowak, and a Community Representative on Cancer Council WA Assessment Panel for Scholarship/Fellowship Fund applicants.

Diana was recently elected as a member of the newly formed Consumer Advisory Panel (CAP) for COGNO under CAP Lead Robyn Leonard. Diana said, “I feel honoured by selection and believe the COGNO role in combination with my BTAA involvement offers holistic brain tumour contribution, so I feel privileged.”

Brain Cancer Biobanking Australia

Thanks to Diana Andrew and Mythily Mariasegaram, Project Coordinator of BCBA who provided content for this article.

BCBA www.bcba.org.au was established in 2015 through the sheer visionary commitment of Consumer Advocate Robyn Leonard as a national consortium of paediatric and adult brain cancer clinicians and researchers who joined forces to network Australia’s geographically and operationally disparate brain cancer biobanks.

A Biobank collects and ‘cold’ stores various types of clinical samples such as blood and tissue and associated data (e.g. clinical history) from consenting donors for research into the prevention, diagnosis and treatment of diseases such as brain cancer. Researchers with ethically approved projects can seek access to donated tissue for their research.

There is growing international recognition that integration of individual biobanks (i.e. in cold storage in city hospitals across the country) is required to provide the critical mass of biospecimens needed to study the complexities of cancer, particularly uncommon ones like brain cancer.

BCBA’s overarching goal is to translate research findings to clinical care and improve treatment and outcomes for patients through a better understanding of the molecular signatures, or biomarkers, of brain cancer in individual patients.

BCBA is not only committed to accelerating brain cancer research within Australia but is seeking opportunities for large-scale international research collaboration. According to leading international brain cancer researcher, Dr. Timothy Cloughesy, Director

UCLA Neuro-Oncology Program, Australia has the potential to establish the largest centralised registry of brain cancer tissue and data in the world and by allowing global access to that register, Australia could do more than Europe or the US to advance brain cancer research.

Professor Anna Nowak is Co-Chair of BCBA and in her voluntary role with Professor Nowak, BTAA’s Perth-based Committee Member Diana Andrew is assisting BCBA in any way she can. Since Diana’s husband Jeff died last year, Diana is passionate about supporting those confronting the challenges of brain cancer research. Currently, Diana is working with Professor Nowak and the BCBA team in developing a questionnaire aimed at seeking insight into how the Australian brain tumour community feels about brain cancer biobanking. BTAA will offer BCBA with practical support including distributing the biobanking questionnaire to our subscribers as an online survey once preparation is final over the coming months.

Contact Diana via email to [email protected]

Read more about Biobanks at http://www.bcba.org.au/biobanks

RESEARCH NEWS

Team BTAA at COGNO, L to R, Nicola Sheehan, Julia Robertson, Tricia Berman, Philip Steel, Diana Andrew and Catherine Hindson.

Professor Anna Nowak and Michael Hawker from the Brain Tumour Association of WA at the Perth IBTA Week lunch.



Accessing Medicines and Clinical Trials in Australia

By Susan Pitt

New Guide

There is a great new guide to accessing cancer medicines in Australia developed by BMS. The guide covers: what it takes to get a new cancer medicine from discovery to market as well as how drugs are regulated, and funded, in Australia. The guide includes a clear explanation on how to access to new medications before the TGA approves them or before they are available on the PBS.

Read the new guide on the BTAA website – there is a short and long form.

http://www.btaa.org.au/page/16/clinical-trials-in-australia Guide to Accessing Cancer Medicines in Australia 1

Guide to Accessing Cancer Medicines in AustraliaOVERVIEW: WHAT IT TAKES TO GET A NEW CANCER MEDICINE FROM DISCOVERY TO PATIENTSThe process of getting a new medicine from discovery to patients is lengthy and involves several key steps. Each stage - from discovery through to trial, regulatory approval and subsidy - can vary depending on the medicine.

1. PRE-CLINICAL RESEARCH: Pharmaceutical companies and their innovation partners spend an average of four years1 developing new molecules.

2. CLINICAL TRIALS: New molecules that show promise in the lab are then tested in carefully controlled clinical trials. The various phases of clinical trials take an average of nine years to complete.2 Only a small number of medicines that enter the trial process are approved.

3. REGISTRATION: Pharmaceutical companies apply to the Therapeutic Goods Administration (TGA) to seek approval to market (sell) a new medicine in Australia. The TGA regulates the supply, import, export, manufacturing and marketing of all therapeutic goods in Australia.

4. RECOMMENDATION FOR REIMBURSEMENT: In Australia, most prescription medicines are subsidised by the Commonwealth Government through the Pharmaceutical Benefits Scheme (PBS) to ensure they are affordable. An independent expert group, the Pharmaceutical Benefits Advisory Committee (PBAC), evaluates new medicines to determine their cost effectiveness and recommends to the Government which medicines should be added to the PBS.

5. MINISTERIAL OR CABINET REVIEW: The Government reviews PBAC recommendations and reaches a decision (e.g. to add a new medicine to the PBS).

6. PBS LISTING DATE: The Health Minister decides when new medicines will be added to the PBS.

7. NEW USE: Should clinical trials suggest a medicine is effective in treating another condition (referred to as a new indication), pharmaceutical companies begin a fresh round of the regulatory and reimbursement processes detailed above.

HOW DO CLINICAL TRIALS WORK? In Australia, clinical trials are regulated by laws and codes of conduct to protect the patients who volunteer to participate and ensure the integrity of the research. All trials must be approved by a Human Research Ethics Committee.

New cancer medicines are usually compared to something else, known as a control. This can be a placebo (which contains no medicine) or a treatment already in use (usually the current standard of care). The most reliable data – often referred to as ‘gold standard’ – comes from trials where patients are randomly assigned to two or more groups and where neither patients nor researchers are aware of which group a patient has been assigned to.

Some clinical trials monitor patients for many months, or even years, to collect data before a final report can be submitted for regulatory approval.

Various organisations can be involved in the clinical trial process, including government departments and agencies, research groups, foundations and charities. However, most clinical trials for a new medicine are sponsored by a pharmaceutical company.

1 Mark E Bunnage, Getting pharmaceutical R&D back on target. Nature Chemical Biology, Vol 7, June 2011, p335

2 Ibid

Funding for Research

It is a tough, time consuming, highly competitive process for researchers to obtain funding. See the range of projects funded by Cancer Australia on priority driven collaborative cancer research.

http://canceraustralia.gov.au/research-data/research/priority-driven-research

Many brain tumour related research projects miss out on government funding.

One of the major funders of research in Australia in the area of brain tumours is the Cure Brain Cancer

Foundation (CBCF).

BTAA receives regular enquiries about the latest therapies, and interest in the GBM Agile program in particular. The CBCF information on the trial has been updated and this trial will now be recruiting late in 2016. See http://www.curebraincancer.org.au/page/178/gbm-agile-information-for-patients

BTAA shares Cure Brain Cancer Foundation’s (CBCF) vision that every patient diagnosed can access new treatments through world-class clinical trials.

Michelle Stewart, Head of Research, writes: “We scour the world for the best clinical trials and work with our international partners to bring them to Australia, so that novel treatments are available at the same time for Australian brain tumour patients as they are globally”.

Projects funded in the CBCF Clinical Trials Stimulus Program include:

• GBM Agile: Adaptive Global Innovative Learning Environment.

• Zero Childhood Cancer: Personalised Medicine Program

• Phase 2 Clinical Study of Med 14736 in patients with Glioblastoma

• VERTU Clinical Trial

• Phase 1 study and biodistribution study of KB004 in patients with Glioblastoma

Read more about these trials and other research and the CBCF research strategy here.

https://www.curebraincancer.org.au/page/158/research-programs

Associate Professor Kerrie McDonald, Head of the Cure Brain Cancer Neuro-Oncology Group

https://engonetbtaa.blob.core.windows.net/assets/uploads/files/2016 01 28 FINAL Short Guide cancer medicines access.pdf

https://engonetbtaa.blob.core.windows.net/assets/uploads/files/2016 01 22 FINAL Full Guide to cancer medicines access.pdf



http://www.curebraincancer.org.au/page/178/gbm-agile-information-for-patients

http://www.curebraincancer.org.au/page/178/gbm-agile-information-for-patients

https://www.curebraincancer.org.au/page/158/research-programs



Staying Connected After Brain Tumour

Thanks, Julia Robertson for arranging this contribution.

Investigators:

• Student Researcher: Lee Cubis

• Chief Investigator: A/Prof. Tamara Ownsworth

• Associate Researchers: Prof. Suzanne Chambers (Griffith University), Prof. Joanne Aitken (Cancer Council Queensland

Brief Summary:

• People with a brain tumour can often feel alone in their experience. Changes in physical abilities, communication, behaviour and mood, may lead to a loss of employment, driving cessation and reduced ability to attend social and leisure activities. The loss of valued social activity and relationships can mean people's social network is exhausted when they most need support.

• This project aims to gain a greater understanding of changes to social networks after diagnosis of brain tumour from the perspective of those living with brain tumour. The finding of this research will inform interventions aimed at supporting social participation after brain tumour.

• If you have been diagnosed with primary brain tumour and are aged 18-85 years of age you are eligible to participate. Your participation will improve our understanding of how people stay connected to important social networks, and the effect that this has on their health and well-being.

• Outline of Participation Requirements:

• You will be asked to complete an interview lasting approximately 45 minutes over the telephone. This interview will include questions about your demographic and health information, a brief assessment of memory, language and attention, and issues regarding your emotional well-being and participation in social activities before and after your brain tumour.

• If you live in South-East Queensland and would prefer to complete the interview face-to-face, the Student Researcher will meet you at a place of your convenience (e.g. at your home, a local library or at Griffith University)

How to Take Part:

If you would like to participate in this study or require more information, please contact Lee Cubis on 0438 208 783 or by email: [email protected]

Wear a Hat for Brain Tumour Awareness and Support!

Brain Tumour Alliance Australia (BTAA) is the only national support and advocacy

organisation for the brain tumour patient, family and caregiver in Australia.

Wear a hat for one day to raise funds to help support those affected by brain tumours.

To find out more email [email protected] go to our website www.btaa.org.au



BTAA relies on the generosity of our community to help us provide support and advocacy on behalf of our community.

You can fundraise for BTAA using the Everyday Hero Channel – including the big runs.

Or you can set up your own fundraising page on our web site.

Drop us a line at [email protected] and we will send you a fund raising kit.

Or donate to BTAA. https://www.btaa.org.au/donations

Thanks to our recent champion fund raisers – you can still donate to them here:

www.btaa.org.au/my-fundraising Brilliant ride by young Thomas Daldy, who rode his bike to fundraise in memory of his uncle, Pedro Cafe. Great work Thomas. You inspire us.

Also thanks to Danielle Sullivan, who is raising funds in memory of her mum Lindy.

Thanks to Clare and the family of the late Dr. Gary Sinclair.

And Barry Walls and friends.

THANKSFUNDRAISING

BTAA thanks its donors. Your funds continue to help grow the organisation and each day it is more capable, committed and able to assist to patients and caregivers.

As noted above BTAA received significant donations from fundraisers in memory of the late Pedro Cafe, Lindy Sullivan and Dr. Gary Sinclair. Also donations in memory of Chris Barnes, Damian Coby Finch, Rev Andrew Donnelly and Jane Harvey.

http://www.btaa.org.au/page/14/one-mans-experience

Ongoing donations received from the families of the late Nicola Scott and the late Sharon Le Roy.

Thanks also for significant donations from:

Lynette Williams (Belconnen Walking Group), St Mary’s High School (Wear a Hat for the Day for BTAA), Tigh Gaelach Gourmet club, Alice Parsons, R. A. Social Club, Ho Kuo-ning, Estrella Munoz, Jeff Robson, Christopher Bickerstaff; Jason Campbell; Clare Curwen Walker; Clinton Leahy; Jennifer Guzman; Simon Montgomerie; Ann Onymous!, Mairi Winkler, Brian Holloway, and Lauren Zammit.

Thanks again to Andrew Simpson, Debbie Pollard and Sylvia Gallagher, who make regular donations to BTAA. We note the passing of Joan Pitt, who made treasure bags for BTAA over several years.

Thanks for assistance to Catherine Smith and Wholistic Financial Services for assistance with audit services.

Thanks also to all those that held awareness and fundraising events for BTAA or our colleagues in other organisation supporting our cause.



Vanzwan Accounting Plus Golf Day funds raised by supporters helped us to produce this newsletter.

Disclaimer: The material provided in this Newsletter and on our website is general in nature. It is made available on the understanding that BTAA is not engaged in rendering professional or medical advice. Before relying on the material users should carefully evaluate its currency, completeness and

relevance for their purposes, and should always obtain appropriate medical advice relevant to their particular circumstances.

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our Twitter, Facebook and LinkedIn accounts! This not only helps our voice to be heard but also gives you a chance to reach out, interact

and communicate with BTAA and the wider brain tumour community!

www.btaa.org.au1800 857 221

Brain Tumour Alliance Australia @BrainTumourAA

Search ‘BTAA’ for various videos

Thank you for reading

Editor Susan Pitt and Mark Dalliston

Designed by Jon Shirley Creative

Printed by Mavericks Printers

Authorised by Susan Pitt, Chair, PO Box 717, Mawson, ACT 2607

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