Support Organisations

Brain & CNS Cancer Nurse Specialist at The Canberra Hospital Ph: 6244 4416.

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.  

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 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.

Email Braintsg@gmail.com for more information.

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

Website http://palassist.org.au/ 

The  Bloomhill Cancer Support Group meets on the last Friday of every month 10.30 am -12.30 pm at 58 Ballinger Road, Buderim.

Contact:

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.

Important changes to Sydney peer-to-peer Support Group arrangements.

Due to study commitments, our facilitator Gerry Tye, is unable to continue leading the meetings on Fridays.

Consequently, meetings have been moved forward to the first TUESDAY of each month.

The meetings will be scheduled at the same time; 10 am to 12 pm, but will be ZOOM ONLY for a period.

Go to our BTAA Sydney Facebook Page, https://www.facebook.com/groups/BTAASYD/  for more details, chats, and information.

Cost of a local call 1300 755 632 Monday - Friday 9am - 5pm or email tsg@nswcc.org.au 
 
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.

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.

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

Download the program 

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

Quest for Life Foundation has been running workshops and residential programs for people and their families living with cancer for over 30 years.

Quest for Life also provide access to a number of wellness education podcasts by Petrea King and Brigit Busicchia that focus on topics that include grief, life's challenges, relationships, pain, trauma, and wellbeing.

These can be accessed here.

North Shore Private Hospital Contacts: 02-84253369

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.

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

The NeuroSurgical Research Foundation was established in 1963 to improve the treatment and care of adults and children affected by neurosurgical conditions including brain tumour/cancer, stroke, neurodegeneration, and brain and spinal cord injury.

As a not-for-profit charity the NRF funds vital research and equipment to improve patient outcomes and quality of life, raises awareness of these conditions, and supports patients and families by providing resources and information on accessing services and support, especially for brain tumour patients.

For key Support Services listing for people with a Brain Tumour in SA visit  https://www.nrf.com.au/brain-tumour-info

The NRF also supports the Adelaide Brain Tumour Support Group. Please see our Facebook page: Adelaide Brain Tumour Support.

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.

Brainwave was established in 1994 to support families and children with brain injuries and illnesses in order to adapt and thrive. Brainwave supports 1000+ families nationally, including guidance through initial diagnosis, equipment and therapy funding, and events and camps for the whole family. We focus on the whole family with a holistic approach, to ensure they are well-supported in the community, well-linked, and well-resourced. We support children with varying neurological conditions, including acquired brain injuries, epilepsy, cerebral palsy, and many more.
Our vision is to ensure that all families have the best access to resources and support so they can bounce back when adversity strikes.

Phone 1300 766 819 or contact

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 on the last Wednesday of each month from 10 am - 12 pm in the Wellness Centre at Cabrini Malvern.
You do not need to be a Cabrini patient to attend this group.
 

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.

info@greymatters.org.au

Kathy Vickers is the Cancer Care Coordinator for the CNS tumour stream at Hume RICS: 107Hume Street, Wodonga, Vic 3690. Tel 02 6057 5206.

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 printed resources, financial aid grants, funded counselling, support groups, retreats, and community events for patients and families across Australia. They also run the National Advocacy Service assisting hundreds of families annually in accessing government-funded programs such as the NDIS, Centrelink payments, My Aged Care, etc.  

National Advocacy Service: https://www.btaa.org.au/support-organisations/national-advocacy-service

Contact details:

There is also a shared brain tumour care coordinator at Royal Melbourne Hospital.

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 btso@austin.org.au

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 wellness@austin.org.au

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)

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.

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:  anne.king@health.wa.gov.au

Australian Meningioma Support Group link

www.cancercouncil.com.au/OC

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.

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?

1. Go to the Peace of Mind Foundation website: https://www.peaceofmindfoundation.org.au/national-advocacy-service
2. Click the Apply for NAS Support button on the left of the webpage
3. Enter your details and under Support Service Request tick National Advocacy Service

Palliative Care Australia's website provides a searchable directory for palliative care services across Australia.

https://palliativecare.org.au/

Inspired by a big heart and brain, the Robert Connor Dawes Foundation was created in June 2013 in the memory of Robert ‘Connor’ Dawes. 

We are battling paediatric brain tumours and supporting brain matters in the areas of research, care and development – to fund the science to end brain cancer and support patients in the meantime.

Music Therapy Program

The Robert Connor Dawes Foundation offers blocks of 10 in-home or online music therapy sessions free to children and young people 25 years and under, Australia wide, who have been diagnosed with a brain tumour.  In some cases where music therapy isn't possible or appropriate, we also have a Music Therapy Resource Grant available.  

Music is more than just fun and relaxing, it can have a profound impact on our brains. Music therapy is an allied health profession that has been found to improve speech and motor deficits, boost mood, reduce anxiety, enhance quality of life and support young people to express thoughts and feelings. It is non-invasive, uplifting and fun, all of which help the heart sing and the mind heal.

 Here is the link to our application page:

Music Matters Grants / Music Therapy / RCD Foundation

(IBTA)maintains an extensive worldwide listing of patient groups here.

Other groups of interest are available here. 

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.

Website: http://www.anaa.org.au/what-is-an-acoustic-neuroma/

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: support@pituitary.asn.au Website: www.pituitary.asn.au