BTAA - Key Persons
Alice came to the BTAA having seen a TV commercial promoting the organisation and she put in a phone call which was answered by the Chair of the organisation. Alice was profoundly heartened to have found an understanding ear when close to no information had been forthcoming regarding management of a life overwhelmed by a brain tumour diagnosis.
Alice's 31 year-old son, Harry has an Anaplastic Astrocytoma, which was diagnosed in June 2015. She is his primary carer. He has had two craniotomies, a major stroke and a Pulmonary Embolism. Cheerfully, he suffers few deficits today and his rehabilitation has been excellent.
Alice lends her energy to helping others in a similar predicament, in the manner in which she has been helped by BTAA. Alice is married with three other adult children, two dogs and an enduring love of language. She writes and reads when she can.
My daughter Erin was diagnosed with DIPG in February 2012 at the age of 12. Erin fought brain cancer for two and a half years during which time she became an international advocate for kids with cancer. Erin passed away aged 14 on 1st September 2014.
Ann joined BTAA after her son was diagnosed with a brain tumour 2021. She was overwhelmed seeking support and understanding, and found it within the BTAA group and wishes to give back to the brain tumour community.
Job Titles:
- Member and Helpline Coordinator
Billy's wife Lynette passed away from a glioblastoma multiforme in 2017. It was the realisation of the impact the disease had on his family over a two year period that has led him to serve on the BTAA's committee. He has received strong support through the monthly meetings held in Canberra. He has three adult children and two grandchildren. Billy is a retired diplomat who served overseas in Africa and South East Asia.
In 1993 my husband and I moved from Adelaide to Brisbane, for a two-year adventure. We are still in Brisbane and we now have two adult children - both at university; two cats and a non-retrieving Golden Retriever. I have had a career in the Queensland Public Service for a period of nearly thirty years, working predominantly in Treasury and the Department of the Premier and Cabinet, providing advice on economic policy. In June 2018 I had been acting as Deputy Commissioner in the Office of State Revenue (part of Treasury) for about a year.
During that June I noticed I was having difficulty using my left hand - inaccurate typing and inability to hold a fork, which worsened quite quickly over a few days. I had a series of scans and a tumour was found which was, post-surgery, diagnosed as glioblastoma multiforme (GBM).
I knew very little overall about brain tumours - the diversity of tumours and the range of negative functional, cognitive, behavioural, psychological, social, and economic effects they carry with them. Personally, I had little idea what navigating treatment would be like. In May 2019, my husband and I attended a patient forum run by the BTAA in Brisbane, which we both found informative and helpful. Since late 2019 I have volunteered in a small capacity with BTAA to continue its important work - every bit helps.
Job Titles:
- Member of the BTAA Committee
- Vice - Chair and Helpline
Catherine joined BTAA after her daughter Renee was diagnosed with an anaplastic astrocytoma in 2010. Since then Catherine has held many roles, serving as Treasurer and Vice-Chairperson before being elected Chairperson in 2016, and then Vice-Chair in 2022. Catherine's passion is to make sure every person diagnosed with a brain tumour is able to access information and support.
She holds a Bachelor of Nursing (post registration) from Deakin University and has enjoyed a 42 year career as a Registered Nurse working in operating theatres around Australia. The last 18 years of her career were spent in operating theatre management, ultimately managing 120 staff across a 10 theatre, multi-campus hospital group.
Catherine took early retirement in 2006 to become a full time carer to her late husband Bill, who passed away with multiple myeloma in 2017. She lives in Canberra where her two daughters, and her three grandchildren are nearby. Renee is now 45 and still doing well.
Job Titles:
- Chairman of the BTAA Committee
- QLD - Chair
Craig's wife, Berlinda, was diagnosed with high grade brain cancer in October 2015. Craig joined BTAA after years of experiencing and witnessing the struggles of brain tumours survivors, families and carers whilst navigating services and supports in Australia.
Craig spent close to 30 years with defence and served in the Royal Australian Air Force, Royal Australian Navy and as a public servant with the Department of Defence. Craig also served with the Australian Customs and Border Protection Service and has consulted and contracted to industry, state and commonwealth governments.
Craig is passionate about contributing to the improvement of services and supports for brain tumour sufferers and families.
Job Titles:
- Secretary
- Founding Secretary, Former Public Officer
Having lost his wife Marg to a brain tumour Denis is the foundation secretary of BTAA and previous Chair of the International Brain Tumour Alliance (www.theibta.org). He was chosen for a public service award by the US-based Society for Neuro-Oncology (SNO) for his dedication and service to the BT community. He was awarded an AM in June 2015 for his services. Denis co-founded BTAA and the International Brain Tumour Alliance (IBTA). He is available to BTAA as a specialist adviser although no longer on the BTAA committee. He is an active member of BTAA, including the ACT Brain Tumour peer-to-peer Support Group.
I entered the Brain Tumour world 38 years ago, losing a young, very close loved one to this insidious disease. In 2015, I became unwell and was incorrectly diagnosed by a GP and a neurologist as having Parkinson's Disease and was prescribed Parkinson's medication, which I refused to take without proper investigation. The neuro ordered an MRI and discovered a large 8cm meningioma on my brain, which was successfully removed 24 hours after it was first identified. Tragically, my older sister was admitted to the same hospital two days after my surgery and was diagnosed with multiple metastatic brain tumours from undiagnosed lung cancer. She has since passed away.
I am retired with a background in healthcare management, development of dementia programs, training and education. I manage the online Australian Meningioma Support Group which currently has 853 members and is growing daily.
I became involved with BTAA some time ago and am part of the Sydney Peer-to-Peer Support Group Leadership Team at the Chris O'Brien Life House at RPA. This group is very welcoming, proactive, supportive, and informative, and for me, it is a place to provide a voice for the many primary benign brain tumour survivors.
I believe I have a pretty good grasp of the twists and turns associated with brain tumours and I look forward to expanding my involvement to get the "words" out where they are needed most, providing information and pushing for more research.
Job Titles:
- Representative for Cancer Council WA
Diana Andrew is a Perth based volunteer community representative for Cancer Council WA, having commenced in this capacity in 2015. For the past five years, Diana has been on the Cancer Council WA PhD and Scholarship Review Panel for annual grant applications and continues in this capacity. Diana is also a volunteer community representative on the Consumer Advocacy Panel for the Cooperative Trials Group for Neuro-oncology (COGNO). Diana has held this position since 2016 when she was invited to be a representative by former COGNO Chair, Professor Anna Nowak. With other CAP team members, Diana regularly provides community review of Clinical Trial Concepts, Patient Information Consent forms, and as otherwise helpful to the COGNO SAC, and attends the annual COGNO ASM. Through her association with COGNO, Diana has been awarded the title of Honorary Associate for the NHMRC Clinical Trials Centre, Sydney Medical School, the Faculty of Medicine and Health, the University of Sydney (the affiliation). The title has been awarded to enable Diana's continuing contribution to the brain cancer medical research activities of the NHMRC Clinical Trials Centre. Diana is an active voluntary contributor to several key brain cancer study committees in Australia and has close relationships with community advocacy groups Brain Tumour Alliance Australia and the Cure Brain Cancer Foundation. Diana is also an enthusiastic community participant in cancer fund-raising initiatives including volunteering at the annual Cure Brain Cancer Foundation's community walk and she finished the Melbourne to Townsville 5,000 km Box Rally for Cancer Council Australia in 2019. Diana continues to be passionately committed to offering volunteer contribution within the brain cancer community in honour of her husband Jeffrey Richard Andrew. Jeff died within 5 months of being diagnosed with a highly aggressive, inoperable glioblastoma, two months after his 51st birthday in 2015.
In November 2016 I received a diagnosis of Grade 2 oligodendroglioma in my right parietal lobe and was advised it was inoperable. In common with most brain tumour patients, I was completely blindsided by this unexpected diagnosis. Prior to this, I was a very fit 54- year-old - vegetarian since 18, a non-smoker, and a non-drinker.
As a result of my diagnosis, I lost my small business - I was the sole owner/operator of a boutique bakery and, as is often the case for self-employed people like myself, I didn't have leave entitlements to fall back on.
I have a wonderfully supportive husband Philip, and three adult children. I am still an avid baker and live on a blissful bushland property in the foothills of the Brisbane Ranges in Victoria with two adored dogs.
I look forward to being able to contribute to the work of BTAA, as I have a burning desire to bring awareness of brain cancer to the forefront of cancer discussion in this country.
In 2017 Eliza was diagnosed with a rare brain tumour, a craniopharyngioma. By the time she had surgery it had grown to a large size; although she had a total resection, she was left with a non-functioning pituitary gland and has had a long process to full hormone replacement. Eliza is a passionate advocate and has learnt a lot about systemic and self-advocacy in the health system. She is now a registered consumer representative and is also passionate about achieving an affordable, accessible, inclusive and holistic healthcare system.
Janet is a Melbourne based patient and co-founder of Grey Matters Brain Tumour Support Group - a registered Charity with Deductible Gift Recipient (DGR) endorsement. "My Brain Tumour Journey started in 1984 with a Meningioma - last operation was 2014. Retired from Commonwealth Public Service after 30 years and now I am enjoying giving back to others through support and assistance on their BT Journey."
Julia is Brisbane based. Julia was diagnosed in 2003 with a benign ventricular tumour. Julia was 29 and she writes: "My children were quite young. After 8 years and continued decline, I went to see Dr Charlie Teo who successfully removed it. One half of my brain and been pushed around into the other half. If it had been left any longer it would have killed me. A benign tumour does not mean it is not life threatening. I am now five years post op and study Psychological Science".
Julia also volunteers for the Peace of Mind Foundation, helping with the Women's Retreat in 2015. She organised Tunes for Tumours to raise funds to support Peace of Mind Foundation in 2016. In 2017, in conjunction with BTAA and Griffith University, Julia assessed the feasibility and suitability of using Zoom ™ as a tool to allow people and their families living with a brain tumour living in remote areas to access psycho-social support.
Canberra based Mary Anne has lost a brother and a sister to brain tumours. Over her long involvement with BTAA she has initiated the Paediatric Resource Project, initiated the Wear a Hat for a Day for BTAA, answered the BTAA Freecall, and co-convened the ACT Brain Tumour peer-to-peer Support Group. Mary Anne has worked as a primary school teacher and a practice manager. She holds a Post Graduate Diploma in Community Counselling. She has also been a Lifeline Counsellor and was a palliative care volunteer for ten years.
Job Titles:
- Co - Founder
- Founders
- Founding Chair
Matt Pitt was a co-founder of Brain Tumour Alliance Australia in 2008, serving as the volunteer inaugural Chair for seven years. Matt was diagnosed with a low grade glioma in 2001, at the age of 19, and experienced a recurrence in 2003. The frustration and isolation of living with a poorly understood cancer-type, and realisation that outcomes remained poor, led him towards brain tumour patient advocacy work from 2004 onwards.
Matt has seven years experience as a regulatory toxicologist, and recently moved to a related field in medical technology. He has a Bachelor (Honours) degree in Biotechnology, and a Masters degree in Public Health, both from the Australian National University. Matt lives in Canberra.
Michael is Alice Parson's brother-in-law and the uncle of her son, Harry. He has first-hand experience of the challenges brain tumour patients endure and joined BTAA to provide assistance to the brain tumour community. Michael was a Barrister of the Supreme Court of NSW and operates a boutique financial services business providing investor introductions, third party marketing services, fund manager marketing and distribution consulting, and capital raising services.
Job Titles:
- Consumer Research Liaison Coordinator
Pam's daughter was diagnosed with a brain tumour in 2011, 2 months before her 37th birthday.
She found the challenges of helping to support an adult child rather daunting and attended a Cancer Council forum in Brisbane.
Job Titles:
- Treasurer of the BTAA Committee
Pat's husband Pete has had three craniotomies, the first in 1988, the second in 2004 and the most recent in 2015. He has had a low grade Oligodendroglioma, ranging from Grade 2 (the most recent) to Grade 3-4 for the previous two.
Pat had never previously sought support until after the 2015 recurrence, when the affects of anti-seizure medication and 3 tumours started to have a more significant impact on their lives. Being able to connect with people going through similar situations has been beneficial in helping them deal with their ‘new normal' life.
Canberra based Patricia (Tricia) Berman lives with her family in Canberra, having retired in 2014 from the Commonwealth public service where she oversaw Australian innovation policy. Tricia wants to continue to support the community and is doing so through her work for BTAA. Tricia managed the BTAA Cancer Australia grant project, which made resources available in a range of culturally and linguistically diverse languages, assisted by a grant from Cancer Australia.
Job Titles:
- Website Coordinator and Helpline
Peter is a semi-retired civil engineer from Coffs Harbour. He has enjoyed a varied career specialising in construction project management for both government and the private sector, but more recently in a self-employed role working in the mining industry. Peter became involved in the brain tumour community when his wife, Jenelle developed a GBM and passed away in 2017 after a 20-month battle. Jenelle had had an unrelated meningioma removed a few years earlier.
Peter has four adult children and is keen to utilise the knowledge gained through his wife's journey to assist others.
Job Titles:
- Member of the Co - Convenor of the ACT Brain Tumour Peer - to - Peer Support Group, E - News and Magazine Editor
Philip was diagnosed with a Right Parietal Meningioma in 2011 and had a successful craniotomy shortly thereafter. Following a few months rest and recuperation Philip was able to return to his work as a high school principal, despite some adverse effects from the tumour and surgery.
Philip joined the Canberra Support Group in 2011 and has been a regular participant ever since. Now retired, Philip has been a Committee Member, assistant secretary and Vice-Chair of the BTAA and currently manages the "Inform" area of the organisation, which produces newsletters and organises publications for the patient information pack.
Susan came to BTAA through her son Matt, the co-founder of BTAA. Susan is a breast cancer survivor, and trained breast cancer and Consumers' Health Forum (CHF) representatives' course participant, and mother of four children, including Matt. Susan has a Bachelor's Degree in Professional Writing and a Masters Degree in Public Policy (ANU). Susan represents Cancer Voices in the ACT.