Brain & CNS Cancer Nurse Specialist at The Canberra Hospital Ph: 6244 4416.
Patient Support by Geographic Area (Please select an option)
Australian Capital Territory
Brain & CNS Cancer Nurse Specialist
BTAA’s Canberra peer-to-peer Support Group
BTAA's ACT and surrounding areas Support Group meets on the 4th Sunday of the month at the Woden Southern Cross Club in Community Room 1 downstairs.
There is wheelchair access to the room. Take the lift to B1. From the lift, enter a corridor to your right that will take you to a closed door with a communication button. Ring the bell and Reception will unlock the door and let you into the room.
The meeting commences at 11.00 am followed by lunch at around 12.15 pm. Please feel free to join us for either the support meeting or the lunch, or both. The coordinators are Pat Wynn and Billy Williams. Should you require further information please call 1800 857 221.
Financial Support - Cancer support group ACT Eden Monaro
Contact Cancer support group ACT Eden Monaro Phone 02 6297 1261 - 21 Cooma Street Queanbeyan. Each case is assessed on its merits. Can provide up to $2,500 for Pharmacy, Chemo, Food drink supplements, food/petrol, and/or gas/electricity.
Brisbane Brain Tumour Support Group
Brisbane Brain Tumour Support Group is a peer support group that welcomes any patient with a brain tumour, carers or loved ones, to share their story and provide or receive support. They meet on the 1st Thursday of each month (except January) from 10am - 12pm at Brisbane City Library, on Level 1 of the Toowong Village Shopping Centre. Plenty of parking is available. They are run independently but supported by the CCQ. Email Braintsg@gmail or call 13 11 20 for more information.
There is also a Brain Tumour Support Nurse at the Princess Alexandra Hospital in Brisbane - Emilia Hunt, Ward 2C, Neurosurgery, Phone 07 3176 2137. Email: email@example.com
This service is funded by Queensland Health and delivered by Cancer Council Queensland. It is available from 7 am - 7 pm, 7 days a week. It is a free service for any Queenslander who has a life-limiting illness or condition, and/or their families and carers (subject to any costs that may be imposed by a client’s telephone service provider for 1800 number calls).
Ph. 1800 772 273
Sunshine Coast Brain Tumour Support Group
The Bloomhill Cancer Support Group meets on the last Friday of every month 10.30 am -12.30 pm at 58 Ballinger Road, Buderim.
Name: Elizabeth Mitchell or Alan Clark
The Newro Foundation
From information supplied by the practice: The Newro Foundation (formerly BrizBrain and Spine) has employed Vivien Biggs RN, for several years as a Brain Tumour Nurse, and who is now Australia's first Neuro-Oncology Nurse Practitioner. Vivien sees patients independently in hospital and in clinic, before surgery, throughout hospitalization, and thereafter. She provides education and support and is a first point of contact for patients and their families. She organizes and coordinates care for Brain Tumour patients and works closely with the Neurosurgeons as well as other treating specialists (medical and radiation oncologist and others) and GPs. Vivien can be contacted on (07) 3833 2500.
Name: Vivien Biggs RN
New South Wales
BTAA’s Sydney peer-to-peer Support Group
Face-to-face and ZOOM meetings will recommence from 10.00 am till 12.00pm on the first Friday of the month starting in February.
The health and safety of our members are paramount, particularly those of us, who are more vulnerable.
A POLL of members will be conducted one week prior to each meeting to determine attendance for the face-to-face meeting. Low numbers will mean a ZOOM Meeting only, so please let your voice be heard.
Go to our BTAA Sydney Facebook Page, https://www.facebook.com/groups/BTAASYD/ for more details, chats, and information.
Meetings are held on the first Friday of the month at Chris O'Brien Lifehouse in Newtown.
Come to the main reception and you will be directed to our room, currently in the Education Centre on Level 5.
Please come if you can. We would love to meet you or see you ONLINE.
Chris O’Brien Lifehouse is located across the road from the Royal Prince Alfred Hospital on Missenden Road, Camperdown, just three kilometres from the Sydney CBD. Lifehouse is easy to get to on foot, by car or using public transport.
See how to get there here: http://www.mylifehouse.org.au/about-lifeho…/getting-here/
Your amazing facilitators are: Alice Parsons, Gerry Tye, and Di Pooley.
Name: Di Pooley
Name: Alice Parsons
Cancer Council Telephone Support Groups - for people living with a brain tumour
Cost of a local call 1300 755 632 Monday - Friday 9am - 5pm or email firstname.lastname@example.org
The Cancer Council NSW provides a free national telephone support group held on the FIRST and THIRD Monday of each month. This is the opportunity for you to talk with other people living with a brain tumour in a group.
There is also a Telephone Support Group for Carers held on the 2nd and 4th Wednesday of each month 1.30-2.30pm (AEST)
All you need is a telephone, an hour and a quiet space from anywhere in Australia and Cancer Council will connect you to the group.
You need to call 1300 755 632 to find out more and register.
Name: Nicky Cove - Primary Brain Tumour Care - Nurse Coordinator
Address: Gosford/Wyong Hospitals, PO Box 361, Gosford, NSW 2250
Hunter Support Network
This group meets on the first Wednesday of each month at a central Newcastle venue.
It is an opportunity for patients, carers and family members to share information and to meet in a friendly, relaxed environment. It is supported by a social worker and the Mark Hughes Foundation care co-ordinators.
There is plenty of parking and good coffee and cakes available.
Name: Kaye Duffy
The Dept of Neurosurgery and Cancer Therapy at Liverpool Hospital hosts a 2nd monthly education and support programme for people diagnosed with a brain tumour.
The meetings focus on various topics and provide opportunities for attendees to share experiences and discuss issues of concern in a supportive environment while enjoying light refreshments. Feel free to bring a support person along.
Dates: 2nd Monthly on Tuesdays
Time: 10 am til 12 midday
Venue: Seminar Room 2 - Education Centre Liverpool Hospital
Name: Theresa Simpson (Oncology Social Worker)
Name: Kylie Wright (Quality and Accreditation Manager)
Mark Hughes Foundation
The Mark Hughes Foundation (MHF) is a Non-Profit, Health Promotion Charity formed in Newcastle by Mark and Kirralee Hughes following Mark's diagnosis with Brain Cancer in 2013. The Mark Hughes Foundation's mission is to raise much-needed funds for research, to create awareness, and support brain cancer patients and their families. MHF host an annual Brian Cancer Patient forum in Newcastle as well as fund three Brain Care Coordinators in the Hunter New England and Mid North Coast Health districts.
MHF Funded support recourses include:
CarerWell – for those that are caring for a friend or family member who may not be a close loved one. - https://markhughesfoundation.com.au/patient-and-carer-support/caring-for-the-carer/
MHF Patient Packs - The MHF patient pack is a symbol of hope and support for patients and their families. - https://markhughesfoundation.com.au/patient-and-carer-support/brain-cancer-patient-packs/
Survivorship Diary - The Survivorship Diary, a free resource for brain cancer patients and their families designed for patients, by a patient. - https://markhughesfoundation.com.au/patient-and-carer-support/the-survivorship-diary/
Phone: (02) 4037 7400
Address: P.O. Box 417, Hamilton NSW 2303
Quest for Life Foundation
Quest for Life Foundation has been running workshops and residential programs for people and their families living with cancer for over 30 years.
Name: Candice Piper
Address: 13 - 33 Ellsmore Road Bundanoon NSW 2578
The Brain Cancer Group (formerly SNOG)
North Shore Private Hospital Contacts: 02-84253369
Name: Marina Kastelan (Neuro Oncology Care Coordinator)
Westmead The Neuro-Oncology Information Network “NOgIN”
The Neuro-Oncology Information Network “NOgIN” is a support and information group for patients/carers from Westmead Hospital and Westmead Private Hospital who have had treatment for brain tumours. We also welcome any patients/carers from outside our area.
The Australian Health Protection Principal Committee (AHPPC) has recommended limits on organised gatherings and meetings to help reduce the spread of COVID-19. The situation with COVID-19 is rapidly evolving and the health and safety of our patients are paramount, particularly those more vulnerable.
Unfortunately, we have been requested to suspend all NOgIN meetings until further notice. We appreciate your understanding as this situation evolves and will notify you once the meetings are able to recommence.
The coordinators of NOgIN remain dedicated to reducing the physical and emotional impact on patients and their families diagnosed with a brain tumour. Please continue to look after yourselves and each other and do not hesitate to contact me if you have any concerns.
Name: Diane Lear, Clinical Nurse Consultant Neuroscience
Address: Westmead Hospital, Hawkesbury Road, Westmead NSW 2145
Adelaide Brain Tumour Support
We are a small informal support group in Adelaide and meet for coffees and other activities.
Please see our Facebook page: Adelaide Brain Tumour Support .
For more information Phone 08 8371 0771
NeuroSurgical Research Foundation
The objective of the Foundation is directed towards funding research into the cause, diagnosis, prevention, and treatment of disease or malfunction of the brain, spine, and nerves.
The NRF was established in 1963 and since its inception, it has made grants in excess of $4.3 million to support neurosurgical research and to establish academic research positions at the University of Adelaide.
Name: Ginta Orchard
Address: PO Box 698 North Adelaide SA 5006
Ballarat Regional Integrated Cancer Centre Wellness Centre Brain Cancer Support Group
If you are a brain cancer patient, carer, friend or family member, then this is the support group for you.
The support group meets the last Tuesday of the month at the BRICC Wellness Centre, Ballarat Base Hospital, 1 Drummond St N, Ballarat Central VIC 3350. Time:1.30pm to 3pm. Cost is free. To book, contact Simone Noelker, Wellness Centre Coordinator at BRICC Phone 53208614 Email: email@example.com
BrainLink Services Ltd (Melbourne)
BrainLink Services is a Victorian based service that is dedicated to improving the quality of life of people affected by Acquired Brain Injury (ABI). We provide resources and information about services to people with Acquired Brain Injury, including people with brain tumours. BrainLink’s first priority is to respond to the immediate needs of the families and friends of those who are living with an acquired brain disorder. We have a Community Liaison Officer in the Neurosurgery Departments of both Royal Melbourne and Monash Hospitals.
Name: BrainLink Services Ltd
Address: Waterman Business Centre - Caribbean Park Suite 201, 44 Lakeview Drive, Scoresby VIC 3179
Brainwave was established in 1994 to support the treatment and care of children suffering from brain illness and injury. Our Brainwave children are diagnosed with neurological conditions including brain tumours, cerebral palsy, epilepsy, stroke, Acquired Brain Injury and more. Our initiatives assist children in being discharged from hospital sooner, help fund equipment and rehabilitative therapies, as well as hosting events, camps and holiday programs vital for families to aid social inclusion. Brainwave steps in to provide practical and meaningful support at a time when it is needed most. Our mission at Brainwave is to help empower families to meet their needs, and we believe that a little bit of the right support at the right time goes a very long way.
Phone 1300 766 819 or contact
Name: LeighAnn Nolan
Address: 228 St Kilda Road, St Kilda VIC 3182
Cabrini Health Brain Tumour Support Group
Cabrini Health runs a support group for anyone living with brain cancer, their friends and families.
Our group is facilitated by experienced Cabrini health professionals. This will include our neuro-oncology nurse coordinators and other specialist staff appropriate to the topic on the day.
Our topics covered vary each month and our group participants are involved with topic suggestions.
This group meets monthly (4th Thursday) at Cabrini Malvern, Ward 4 West.
You do not need to be a Cabrini patient to attend this group.
Name: Emma Daly - Neuro-Oncology Clinical Nurse Consultant
Address: Malvern Melbourne Victoria
Grey Matters is support group for those living with a brain tumour, their family and friends. Grey Matters is affiliated with Cancer Council Victoria and associated with Melbourne Hospitals (including Royal Melbourne and The Austin). Meets 3rd Monday of the month at the Carlton North Library at 7pm for 7:30pm. Contact Janet - 0422 639 993.
Kathy Vickers is the Cancer Care Coordinator for the CNS tumour stream at Hume RICS: 107Hume Street, Wodonga, Vic 3690. Tel 02 6057 5206.
Name: Kathy Vickers
Address: 107 Hume Street, Wodonga, Vic 3690
Peace of Mind Foundation
Peace of Mind Foundation (POMF) was created to give support, courage and community to brain cancer patients, carers and their loved ones. Peace of Mind provides financial aid grants, in home services, funded counselling and face to face support groups for Victorian families. They also host annual brain cancer retreats for patients and carers across Australia. POMF holds a brain tumour support group meeting in Geelong. Meetings are held every second Monday of the Month at the Andrew Love Wellness Lounge, Andrew Love Cancer Centre, Geelong.
National Advocacy Service: https://www.btaa.org.au/support-organisations/national-advocacy-service
Name: Bec Picone
Royal Melbourne Hospital
There is also a shared brain tumour care coordinator at Royal Melbourne Hospital.
Name: Marcia Fleet
The Brain Tumour Support Service
The Brain Tumour Support Service is based at the Olivia Newton-John Cancer Centre.
Austin Health provides a range of services to people affected by the diagnosis of a primary brain tumour including a monthly support group, information/education programs, individual support appointments and support for carers.
The Brain Tumour Support Group is held on the 2nd Wednesday of the month 11am-1pm at the Olivia Newton-John Cancer Wellness & Research Centre, Level 3, 145 Studley Road, Heidelberg. Contact person is Dianne Legge (Brain Tumour Support Coordinator) 9496 3315 or firstname.lastname@example.org
The Brain Tumour Support Service is open to anyone affected by the diagnosis of primary malignant brain tumour:
patient, carer, family, friend & does not need to be a patient of the ONJ Centre or Austin Health.
Anyone can attend, as long as they can get there.
Wellness & Supportive Care email contact email@example.com
Brain Tumour Support Group WA
Brain Tumour Support Group Western Australia meets monthly during school terms. We usually have a shared lunch on the third Sunday of the month. Please check our Brain Tumour Support Group W.A. Facebook page for all details or call Celia Byass 0417323623. Look forward to meeting you. (or call 1800 857 221 - BTAA Helpline)
James Crofts Hope Foundation
The Foundation is committed to providing support and assistance to adults and children diagnosed with brain tumours, their carers and family, and also to the advancement of the treatment, and research of these conditions. Home or hospital visits can be arranged with a call to the secretary John on 0428247319. Counsellor in Perth suburbs available on request.
Sir Charles Gairdner Hospital
Medical Oncology and Radiation oncology inquiries 6383 3000, MRI Inquiries 6457 7900. The WA Cancer and Palliative Care Network website can be accessed here. The contact numbers for the neuro oncology cancer nurse coordinator (Anne King) ph: 0400 021649 or office number 08 92220202 Email: firstname.lastname@example.org
Australian Meningioma Support Group
Name: Di Pooley and Robert DiGiovanni
Cancer Council Online Community
The Cancer Council Online Community offers people currently living with cancer, cancer survivors, families, carers and the wider cancer community the opportunity to connect, share experiences and find information and support in a safe forum.
Available 24/7 through blogs, discussion forums and support groups, members can discuss their experiences and share stories, tips and coping strategies to help normalise concerns and reduce social isolation.
National Advocacy Service
Cure Brain Cancer Foundation and Peace of Mind Foundation are proud collaborative partners of the National Advocacy Service, which directly assists families with accessing support services including the National Disability Insurance Scheme (NDIS), Centrelink and other government programs.
The service launched on November 1 2021 and we are here to help you with:
General information & advice (online, phone or face-to-face)
Connecting you to local support services/contacts within your region
Applying to the NDIS, Centrelink, Carer Gateway, etc
Sending you a copy of ‘The Survivorship Diary’ - a new brain cancer resource
If you require the services above or are seeking services for your specific needs, we would love to hear how we can help.
How do I request support from the National Advocacy Service?
- Go to the Peace of Mind Foundation website: https://www.peaceofmindfoundation.org.au/national-advocacy-service
- Click the Apply for NAS Support button on the left of the webpage
- Enter your details and under Support Service Request tick National Advocacy Service
Palliative Care Australia
Palliative Care Australia's website provides a searchable directory for palliative care services across Australia.
The International Brain Tumour Alliance
Acoustic Neuroma Association Australia
An Acoustic Neuroma (or Vestibular Schwannoma) is a benign encapsulated tumour which arises from the 8th cranial nerve. The 8th cranial nerve is actually two separate nerves, one associated with balance and the other with hearing and it is here that this tumour usually arises from either one of these nerves in the bony internal auditory canal between the inner ear and brain. The 7th nerve which services facial movement also passes through this canal as do important blood vessels. These tumours are usually slow growing but as they expand they begin to press on the hearing, balance, and other nerves. They can then extend into the area at the base of the brain and press on the vital structures of the brain, which can be life threatening.
Australian Pituitary Foundation Ltd
A national organisation. The Foundation supports and educates people impacted by pituitary disorders. It conveys awareness and provides relevant information to the general and medical communities and acts as a collective voice for pituitary patients and their families. Ph 1300 331 807. Email: email@example.com Website: www.pituitary.asn.au