Our committee meets on a monthly basis and in accordance with our rules and principles of incorporation makes important decisions on how our organisation is run and how we provide our services.
Our committee is attended by Executive and general committee members who have been formally elected at the Annual General Meeting.
In Accordance with the CONSUMER AFFAIRS VICTORIA, Associations Incorporation Reform Act 2012 the GSNV has opted to adopt the model rules for and Incorporated Association per the Associations Incorporation Reform Regulations 2012. The new model rules provide the basic structure and guiding rules for the GSNV Inc and when and where necessary the GSNV Committee will suggest and develop rule changes and amendments to the general rules. The Genetic Support Network Victoria rules can be viewed here: GSNV Rules.
Our board membership is skilled based and regularly reviewed. Expressions of interest can be placed through our contact us page, or you can fill out an application here: Committee Recruitment Document and submit to firstname.lastname@example.org.
President: Rachel Pope-Couston
I graduated from the Melbourne Master of Genetic Counselling in 2014 and I am currently working as an Associate Genetic Counsellor with the Tasmanian Clinical Genetics Service. Genetic counsellors undertake an extensive certification process that I will complete this year, which will make me a Certified Genetic Counsellor. I have been a committee member and the Treasurer of the GSNV since 2013 and it has been a joy to be part of the growth and evolution of the GSNV over the past 6 years. I come from a family that all works in healthcare in one form or another and where we are all passionate about advocacy and making sure that every person is represented and respected. I came to genetic counselling a bit later in life after a number of experiences convinced me it was what I really wanted to be doing. I believe that genetics (and now genomics) has the ability to empower individuals and families, but that people often need support to access and utilise the benefits, which is why I am so pleased to be a committee member, and Treasurer, for the GSNV.
Vice President: Rebecca Purvis
Rebecca Purvis is an Associate Genetic Counsellor who works at The Parkville Familial Cancer Centre, providing genetic counselling to families with, or at risk of, inherited cancer predisposition syndromes. Rebecca undertook a Bachelor of Science majoring in Genetics and a Postgraduate Diploma in Health Sciences majoring in Bioethics at the University of Otago in New Zealand. She went on to complete her Masters of Genetic Counselling at Arcadia University in Philadelphia, sponsored by a Fulbright New Zealand Science and Innovation Graduate Scholarship. Whilst there, Rebecca conducted a thesis project exploring how parents of children with rare, multi-system developmental disorders perceive genetic testing, and what factors influence their experience with, and uptake of, genetic health services. Upon graduating, Rebecca was awarded the Tracy M. Gardner Award for Excellence in Genetic Counselling and the A. Richard Polis Graduate Scholarship Award for the graduating class.
Rebecca has previously worked as an assistant for the Honours program at Arcadia University, developing academic mentoring and scholarship assistant programs. Prior to moving to America, Rebecca worked for the New Zealand Ministry of Education, specialising in sector communication and training and counselling support for school administrators. She has been involved in multiple non-profit initiatives including Give Kids Sight, The Kelly Ann Dolan Memorial Foundation, Youthline and the New Zealand Cancer Society Relay for Life. Rebecca is passionate about community engagement with genetics and has long-term interests in improving education and access efforts so that genetic health services are integrated effectively within the public health sector. Over the next few years she is looking to complete further research investigating how genetic counselling impacts a family’s feeling of empowerment with the overarching aim being the continued improvement of service delivery. Rebecca hopes that her background and interest areas will contribute to the GSNV’s core mission.
Treasurer: Chris Richards
Chris is a program manager within the Infection and Immunity theme at the Murdoch Childrens Research Institute. He provides strategic advice and support to clinical paediatric researchers at MCRI and guides a programmatic research stream into antibiotic use and misuse in children. Chris completed his PhD at Monash University in molecular and animal model genetics in 2015. His thesis focussed on understanding the mechanisms of dietary and systemic zinc homeostasis using the model organismDrosophila melanogaster.Following this, he worked as a Regulatory and Research Development officer for a start-up biotech company developing novel treatments and diagnostics for use in animal & human health.
Chris is a volunteer with the GSNV and regularly contributes content to the newsletter and is a supporting member of the Lived Experiences Advisory Group. He is passionate about science communication and the issues associated with the rapid advances in genomic and genetic testing. He is particularly interested in the ethical dilemmas surrounding direct to consumer testing and ensuring consumers and patients understand the results of genetic testing and can make informed decisions. With a strong scientific background, Chris hopes to provide an alternative perspective on the GSNV committee as it moves forward to tackle the challenges of the genomics era.
Secretary: Lucas Mitchell
Lucas has just recently graduated with a Bachelor of Science from Monash University, majoring in Genetics and minoring in Developmental Biology. From this, he has now gone onto studying the new Master of Genetic Counselling program at the University of Technology Sydney (UTS). Lucas has a strong interest in genetics and embryology, but also loves being able to interact and support different likes of people the genetic counselling profession offers. He hopes to be able to work as a genetic counsellor in prenatal or cancer genetics. Overall, he is fascinated with the advancements of genetics in the last few years and the ethical and communication challenges that have arisen from it. He is passionate to contribute to the community and raise awareness about genetics in the public. Lucas brings an alternative perspective not only as a student, but also, as a volunteer, having volunteered at various organisations associated with the GSNV and Leukodystrophy Australia.
General Committee Members:
Marta Cifuentes Ochoa
I am a Master of Genetic Counselling student from The University of Melbourne, undertaking the second year of the degree.
I did a Bachelor of Science majoring in Cell Biology and Genetics in Spain (Universidad Autónoma de Madrid) and pursued an international scientific career in plant genetics for 10 years, working as a researcher in academia and the private sector, in different organisations in France, the US and Australia. During this time, I became passionate about supporting people, and volunteered in different settings (meals on wheels, visiting patients in hospitals). When I moved to Australia 4 years ago, I became part of the GSNV volunteer crew and decided to start my journey to become a genetic counsellor, which I thought was the perfect balance for me: supporting people through their genetic health journey. I hope to be able to work as a genetic counsellor in prenatal or paediatric genetics, but I will take every opportunity to grow personally and professionally in every aspect of the profession.
In addition to the GSNV, I have been involved with different non for-profit organisations such as International Social Service Australia, Williams Syndrome Family Support Group Victoria, Usherkids Australia and Fanconi Anaemia Support Australasia. I am very excited about joining the GSNV Committee and I hope my volunteer experience, research background and current genetic counselling training will contribute to improving the lives of people living with genetic and rare conditions, and their support network.
Support Group General Members for 2020/2021
Natalie has joined the GSNV Executive as our support group representative for the year. Natalie works for the Children’s Tumour Foundation as a Support Co-ordinator. She joined the organisation after completing her Master of Genetic Counselling. She has spent the past five years working towards establishing better support and services for the Neurofibromatosis (NF) community and empathises deeply with the families she meets. Natalie is passionate about equity of service access to all members of the community and enjoys engaging in the advocacy space having studied law in a previous life. She has enjoyed watching the GSNV grow and develop and is very excited to be part of the team.
Kristiina is passionate about combining her professional expertise in the public health sector and her lived experience as a person with a genetic condition to improve the health and wellbeing of the community.
As the co-founder and President of MRKH Australia, a charity which provides support for people impacted by Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome, she is aware of the unique needs and challenges of people with rare and genetic conditions. She is a member of the Global MRKH leadership team, which aims to improve the lives of those with MRKH across the globe as well as a patient advocate for clinical trials such as the Australian Uterus Transplant team at the Royal Prince Alfred Hospital, Sydney.
Kristiina is passionate about highlighting the lived experiences of people with rare and genetic conditions and the life changing impact of peer support. She has presented work highlighting this need to the medical community at several conferences in the US, China and Australia. She is very excited for the opportunity to join the GSNV Committee of Management and contribute to the fantastic work the GSNV do for the Victorian community
Volunteer representation for 2020/2021
I first joined GSNV as a volunteer 2 years ago however my passion for genetic support started a long time before this. My sister, who herself has a rare genetic deletion, has been my inspiration not only for joining this fantastic network but also an inspiration for the way I live my life. Increasing awareness about these rare genetic conditions and providing educational and working opportunities these people are – in my opinion – a gap that still needs to be closed in Australia.
Through GSNV, I have been fortunate enough to help in the formation of the Li Fraumeni Syndrome Association Australian/New Zealand chapter and also have volunteered for Epithelioid Hemangioendothelioma (EHE) rare cancer foundation. It has been a good experience and has given me an opportunity to experience first hand what is involved in running charity organisations.
Outside of GSNV, I am currently in my first year of a PhD through the University of Melbourne. I am working with the EJ Whitten Prostate Cancer Research Centre and Peter MacCallum Cancer Centre looking at new developments in the exciting field of prostate cancer. I hope to one day be a Urologist whilst maintaining a strong connection with the genetic support community.
Giorgina is in her final semester of a Bachelor of Science majoring in Genetics and minoring in Molecular and Cellular Biology, as well as a Bachelor of Arts majoring in Psychology at Monash University. She is passionate about genetics and scientific communication hoping to eventually pursue a career in Genetic Counselling. Giorgina has volunteered for the GSNV for a number of years, having been involved in events such as Rare Disease Day and the Genetic Link site. She is passionate about advocating for support and programs targeted at those from rural and regional areas as well as low SES communities. She hopes her volunteer experience and interests can will help contribute to the GSNV’s mission to help support those with rare, genetic and undiagnosed conditions.