australia-newzealand-icon

Kia Ora

Kia Ora and Welcome to LFS Association – Australia/New Zealand!

My name is Samantha Arthur and I am really excited to join the LFSA team as the Branch Chair for New Zealand! Based in Aotearoa, I am here to help those living with LFS in this region of the world connect with their top international LFS resources!

I was diagnosed with Li-Fraumeni syndrome in 2011, one of a large number of those living with LFS in my extended family. In a strange way, it was a relief to know there was a reason so many of the members of my family were being lost or hit hard by so many cancers. After my mother passed away from yet more cancer, I chose not to be tested, as I was not ready to know. Fast forward to having two pre-schoolers and being pregnant with my third – it occurred to me that the best way to protect my three children was to be aware of my own risk factors.

Before my diagnosis, it seemed that cancer was a death sentence, for most everyone I knew that had cancer passed away. I have since become a part the worldwide LFS community and have discovered an amazing array of people from all walks of life, living and thriving, despite our increased risk of developing cancer. I have also become aware of all the wonderful LFS research conducted internationally, and the progress made in cancer research, treatment, early detection, and potentially even prevention! My passion is to share awareness and hope, and to help guide others to the resources available as they seek to find their own balance in living life with LFS.

Through Research, Education, Advancement, Collaboration, and Support, the LFSA has so much available here to help you. Reach out if you or someone you know needs us! You can contact me directly at: sarthur@lfsassociation.org. Know that you are not alone!

 

Dr. Laura Forrest – Branch Co-Chair

Dr. Laura Forrest is the lead researcher in the Psychosocial Cancer Genetics Research Group based in the Parkville Familial Cancer Centre at the Peter MacCallum Cancer Centre in Melbourne, Australia. Laura’s team focuses on researching the psychosocial implications of hereditary cancer for individuals and families, especially those with Li-Fraumeni Syndrome and hereditary breast and ovarian cancer. Laura conducts research with families with hereditary cancer and the clinical staff (genetic and oncological health professionals) who care for these families.  Laura’s research aims to ensure the information and support needs of families with hereditary cancer are met to ensure they can make informed decisions about their significantly increased cancer risks and cancer risk management options. Laura is excited about joining Sam as co-chair of the Australia/New Zealand chapter of the LFSA. You can reach her at laura.forrest@petermac.org

Contact Us!

NEW!  Youth study:  STUDY:   Young People with Li-Fraumeni syndrome – are their psychosocial needs being met?  This study aims to understand how young people experience Li-Fraumeni syndrome on a day-to-day basis, and what their age-specific support needs are. We aim to make recommendations for the development of psychosocial model of support specifically for young people with or at risk of LFS.  Sponsored by the Peter MacCallum Cancer Centre.  Learn more here.
Contact:
Mr Rowan Forbes Shepherd
Principal investigator
Qualitative Health Research
Email:  Rowan.ForbesShepherd@petermac.org
Phone:  03 8559 6194

 

September 2018:  Families’ and health care professionals’ attitudes towards Li-Fraumeni syndrome testing in children: A systematic review