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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!

Claire Wakefield is a Professor at UNSW Sydney. She leads the Behavioural Sciences Unit, which is based at the Kids Cancer Centre at Sydney Children’s Hospital. Claire started her career working in hereditary cancer before moving to children’s cancer. Of all areas of cancer research, she feels that hereditary and paediatric cancers have the greatest family impacts. Developing an understanding of ‘family’ has therefore become an underlying theme throughout her career. Claire has a particular interest in the impact of genetics, genomics and precision medicine on children. She has always had a passion for looking at ways to better support families affected by hereditary cancer, including Li-Fraumeni Syndrome. Prof Wakefield holds several key leadership roles, including being Chair of the Paediatrics Special Interest Group for the International Psycho-Oncology Society.  Claire gracefully co-chairs the Australia / New Zealand chapter of the LFSA with Samantha Arthur.  You can reach her at c.wakefield@unsw.edu.au.

 

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