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BTAA Committee and TEAM

BTAA is run by a volunteer committee. Contact btaa@shout.org.au for more information about the BTAA Committee. See our rules and constitution.

 

The BTAA AGM on 20 September 2018 elected the following to the Committee.

 

Catherine Hindson (Chair), Philip Steel (Vice Chair), Tricia Berman (Secretary), Pat Wyn (Treasurer) and Billy Williams (Assistant Secretary), Pam Hubner (QLD), Alice Parsons (NSW), Stephen Newman (NSW), Michael Parsons (NSW); Janet Micallef (VIC); Peter Ramstadius (NSW) and Mariann MacNamara (SA)

 

The public officer is an unelected position and remains Tricia Berman. 

 

 

The BTAA Committee - left to right: Susan Pitt, Philip Steel, Pam Hubner, Alice Parsons, Stephen Newman, Pat Wynn, Julia Roberston, Janet Micallef, Billy Williams, Catherine Hindson.

 

Profiles of Committee and BTAA Team

 

Catherine Hindson (Chair)

Catherine lives in Canberra and was a Registered Nurse for 40 years. Her interest in Brain Tumour support arose in 2010 when her then 36 year old daughter Renee Hindson was diagnosed with a Grade 3 Astrocytoma.  Catherine is well supported in her BTAA activities by her husband Bill. Call 1800 857 221 to talk to Catherine.

Hear Renee speaking at a BTAA forum at the Cancer Council Queensland about her on her experience in a podcast here.

 

Philip Steel (Vice Chair, Co-convenor of the ACT Brain Tumour Support Group)

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. 

Philip would especially like to see world class and seamless brain tumour care coordination become the rule in all Australian brain tumour hospitals.

 

Patricia Berman (Secretary, Public Officer)

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 currently manages the BTAA Cancer Australia grant project, to make resources available in a range of culturally and linguistically diverse languages assisted by a grant from Cancer Australia.  

 

Pat Wynn (Treasurer)

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.
Pat is now the BTAA Treasurer.

 

Billy Williams (Secretary)

Billy's wife Lynette passed away from a glioblastoma multiforme in 2017. It was the realization of the iimpact 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 grandchilden. Billy is a retired diplomat who served overseas in Africa and South East Asia.

 

 

 

Pam Hubner (Committee Member)

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. There was some information there about BTAA, a national body to help Brain Tumour patients and their carers. Always wanting more information, to be able to help her daughter navigate this journey, Pam found that by joining as a member, it gave her access to much more information and resources to achieve this goal. After being told her daughters tumour was inoperable, it was through the information received from BTAA that Pam learnt the importance of asking questions and the seeking of a second opinion. Down the track that opinion was sought and her daughter has now had 3 surgeries, radiation and chemotherapy. Pam lives in Queensland and continues to help her daughter and assists in helping BTAA with their endeavours for the ongoing support for braIn tumour patients and their families.

 

Stephen Newman (Committee Member)

Stephen is a Sydney based writer and former IT consultant who joined the committee in September 2017. He underwent 15 hour surgery to remove a Petroclival Meningioma in July 2016 and had subsequent radiotherapy treatment at the RPA. Stephen is passionate about helping to spread a message of hope within the brain tumour community and one of recognition within the broader community. Stephen is also an avid cyclist, he believes exercise can play an important role in recovery. He is co-convenor of the Sydney Support Group which meets monthly at the Chris O’Brien Lifehouse and is assisting to develop new communication platforms for BTAA.

 

Alice Parsons (Committee Member) 

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 has an Anaplastic Astrocytoma, 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.

 

Janet Micallef (Comittee member)  

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 Menigionoma - 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."

 

Peter Ramstadius (Comittee member)

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.

 

 

 

Unelected Team Members

 

Julia Robertson

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. 

 

Diana Andrew

Perth based, Diana Andrew became involved in advocacy for people with brain cancer in April 2015 after Jeff, her best friend of 32 years and robust 51 year old husband, passed away after a 5 month battle with a highly aggressive glioblastoma. Passionate about brain cancer medical research, Diana is Community Advocate for the Cooperative Trials Group for Neuro-Oncology (COGNO), Scholarship Review Panel Member for Cancer Council WA, supporter of the Cure Brain Cancer Foundation and volunteer with Professor Anna Nowak, Neuro-Oncologist at Sir Charles Gairdner Hospital.

 

 

Nicola Sheehan (Consumer Research Liaison Coordinator)

Canberra based. Organised submissions to the Senate Enquiry into Cancers with a Poor Prognosis and appeared at the Canberra hearing as part of the BTAA contingent.   

 

Dr Anita Berghout (Patient Liaison, former Committee Member)

Anita lives in Newcastle and has a PhD in Linguistics. Anita is active in the Hunter Brain Tumour Support Network and raises awareness in her community. She is well supported in her advocacy activities by her husband Bob. She was elected to the committee in 2014. Anita wrote:

 

"I had my Brain Tumour diagnosed in August 2003.  My tumour is a Ganglioglioma, which tends to grow slowly.  I had three operations in Newcastle—in September 2006, March 2009, and August 2011—and then Radiation at the Royal North Shore in Sydney.  Because the tumour is deep inside the Left part of the brain, it cannot be totally removed. It has affected my bilingualism a bit after my third operation—for a while I mixed up Dutch (my childhood language) and English for spelling and readings of words! I have stopped working as a Linguistics lecturer at the University of Newcastle. I feel so supported by family and friends that I now feel totally ready to support others affected by Brain Tumours."

 

Thanks also to Trish who helps with our office at S.H.O.U.T., Canberra and provides administrative support.

 

BTAA receives advice from former committee members Matt Pitt, Denis Strangman and Mary Anne Rosier who stood down from the committee at the 2015 AGM after seven years of service.  Although no longer on the BTAA committee, nor representing BTAA, each are available to provide specialist advice to BTAA upon request and continue as financial members of BTAA. 

 

Matthew D. Pitt (Founding Chair)

Matt Pitt is a co-founder of Brain Tumour Alliance Australia in 2008, serving as the volunteer inaugural Chair since this time. 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. Hear more about Matt and his experience as a brain tumour survivor in a You Tube video of his 2012 presentation here.

 

Mary Anne Rosier

Canberra based MaryAnne has lost a rother 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 Support Network.  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.

Hear more about Mary Anne in her presentation on the challenges of coping with a brain tumour in the family here

 

Denis Strangman AM (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 his 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 Support Network.

 

Susan Pitt  (Advisor)

Susan came to BTAA through her son Matt, co-founder of BTAA.  Susan is 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 degree in Professional Writing and a Masters degree in public policy (ANU).  Susan represents Cancer Voices in the ACT.