What we do…
CRBF is dedicated to significantly improving support for those living with sarcoma and their families, working collaboratively toward improving optimal patient care pathways, funding research to improve treatment options, and survival outcomes for those living with a sarcoma diagnosis, and heightening awareness of sarcoma in the community.
We do this in three important ways by:
• Raising vital funds for critical and innovative clinical research;
• Providing practical and personal guidance to support sarcoma patients, and their families, throughout treatment; and
• Raising awareness among health professionals and the general public to promote early detection and diagnosis.
The JGSP&FSP is in place for those who have been diagnosed with sarcoma, and their families, providing national support in a number of “non-menu” ways. We tailor our patient support programme to suit the individual, rather than a one size fits all approach, and all communication is strictly confidential.
An example of the assistance we have provided over the past five years includes but is not limited to:
- Peer support, a warm and empathetic person with lived-experience
- Patient kits for newly diagnosed patients across Australia
- Out of pocket expenses for IVF
- Assistance in bridging the gap for experimental therapies
- Grocery cards
- Petrol cards
- Assistance with gap payments for expensive medical procedures
- Incidental expenses incurred as a result of sarcoma treatments
- Practical support ie carer support, assistance navigating government agencies
- Provision of meals
- Assistance for those needing specialised equipment ie beds, oxygen, walking frames etc
- The Fergus McCulla Psychological Support Programme (free of charge to sarcoma patients and families)
- Patient advocacy with medical teams and government organisations
- Funeral expenses for those in financial hardship
Our growing patient support programme headed by Keith Cox OAM, a recognised Australian expert in nursing support for young cancer patients, and joined by Mitchell Rice-Brading, Patient Care Navigator, Karen Atkins, Pastoral Care Coordinator, Merran Cunningham registered psychologist, Nathan Salgo, medical student, Dr Lahvinya Kulaendra, registered psychiatrist, and Louise Hird registered clinical psychologist can provide practical and personal and professional guidance to support patients upon diagnosis and throughout treatment.
It is with greatest pride that as of December 2022, our patient support programme proudly bears the name of Jack Gibson. The Jack Gibson Sarcoma Patient & Family Support Programme honours of the memory of a young man who touched the lives of so many.
Jack Gibson tragically passed away on November 1, 2022, just over a week prior to his 26th birthday. He had valiantly fought osteosarcoma for five years, and a significant portion of that time was also devoted to improving patient care pathways and support mechanisms for those living with sarcoma, as the CRBF Patient Advocate.
Jack’s lived experience, and his deep knowledge of the vast array of unmet needs that exist as a result of a sarcoma diagnosis informed the early phase of the CRBF Patient support programme. This national programme continued to grow annually under Jack’s supervision, currently supports over 300 patients, and their families, and is funded by the generosity of the Australian community.
Those who knew Jack, also knew his optimism, positivity and hope for the future were all emblematic of who he was and how he will always be remembered by his family, friends, and those who admired him from afar.
Jack worked closely with Keith Cox OAM, and the CRBF Board of Directors to assist our Foundation in targeting the specific needs of sarcoma patients and their families.care
Meet the team
Mitchell Rice-Brading – Patient Care Navigator
Mitch is Cooper’s much loved older brother, and he formed a critical part of Cooper’s team of palliative carers. His first hand experience with regards to the specific needs of young sarcoma patients is vast, comprehensive and very personal.
At 23, Mitch completed an undergraduate science degree, majoring in psychology at the University of Sydney, followed by his Honours year completed in 2021 with a view to completing a Masters or PhD in Clinical Psychology. He is a provisionally registered Clinical Psychologist, and is employed as a senior consultant in social policy with national social policy Consultancy, ARTD.
Mitchell volunteers as a trained mentor with Feel the Magic, an organisation dedicated to providing early intervention grief education programs for kids aged 7 to 17, who are experiencing pain and isolation due to the death of a parent, guardian, or sibling.
Mitch also volunteers his time with CRBF, to assist young patients and their families with an array of practical matters they may experience throughout treatment, thus providing a solid platform in which to be heard.
Keith Cox – Medical Advisory Board/CRBF Director
Patient Support Medical Consultant
Keith was the Oncology/ Chemotherapy Nurse Practitioner at the Chris O’Brien Lifehouse until the end of 2017, after some 38 years in cancer nursing. He now remains involved in a consultant role.
Keith is a Senior Clinical Lecturer at the University of Sydney, and is an Accreditation Assessor for the Australian Nursing and Midwifery Accreditation Council (ANMAC)
As a Nurse Practitioner, Keith bore a greater responsibility than a regular nurse, prescribing medicine, ordering tests and screenings, and the referral of patients to other medical professionals.
Keith was awarded an Order of Australia Medal in the 2007 Queen’s Birthday honours list for his services to Cancer Nursing, his work with youth and his volunteer work.s
Tania Rice-Brading – Patient & Family Care Coordinator
Tania Rice- Brading will often be the first point of contact within CRBF. She is an experienced sarcoma patient carer with eight years of lived experience, both as carer for her youngest son Cooper, and through becoming the first line contact for hundreds of patients and family members.
Tania is passionate about her role within CRBF, having worked closely with the patient support team to identify the unmet needs that exist for those diagnosed with sarcoma in Australia
Karen Atkins – Pastoral Care Coordinator
When someone you love, or perhaps you, are given a Sarcoma diagnosis you are catapulted into what feels like a vast unknown. A pathway of treatments and uncertain outcomes lay before you and it can be overwhelming, isolating and cuts to the very core of our beings. Karen knows first-hand this landscape of fear and uncertainty after her youngest daughter was diagnosed with Osteosarcoma at aged 15 in 2017.
Karen has walked alongside others, in a variety of professional capacities, for more than 20 years, in what she describes as Compassionate Companioning. The deep awareness and insights gained from personal experience of the impact a Sarcoma diagnosis has on the entire family, influenced a shift in passion and career focus. Karen now devotes her time to walking alongside families and patients, as a spiritual care practitioner, working in paediatric and adult hospice care.
Karen volunteers her time with CRBF, providing companionship to families, through the sarcoma journey, and when needed, through grief and bereavement.