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 7 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: Julie Cini
Julie founded Spinal Muscular Atrophy Australia in 2005, and had grown a successful non-profit patient advocacy group. For 18 years under Julie’s leadership in this organisation has seen her successfully campaign for increased awareness, diagnosis and better access to treatment for SMA patients.
Julie’s consumer led research has had a great impact on the PBAC and highlighting the severe unmet need within the SMA community for treatment. She continues to work with the policy makers to ensure patient evidence is valued and addressed as part of the submissions.
Her results speak for themselves – in four years she has successfully achieved the following.
✓ 2018 the first treatment for SMA was approved by the government onto the PBS for those under 19 years living with SMA.
✓ A national pre-genetic screening program called Mackenzie’s Mission where SMA Cystic Fibrosis and Fragile X to be tested for pre pregnancy from November 2023 and funded through Medicare
✓ 2022 the first gene therapy for SMA was approved for those under 9 months. ✓ A national new-born screening program was recommended in 2021 by the Federal government and we are working with each state for funding announcements respectively.
✓ 2022 also saw the recommendation of the first treatment extend its approval for adults
No matter what stage of SMA you at there will be something you can access. This dream and promise to her girls that she would ‘fix it’ 18 years ago is now a reality for the community, creating a lasting legacy in honour of her 2 daughters Montanna and Zarlee.
In addition to her advocacy work, Julie is a published author. Her book Leaving Life Legacies is her inspirational story of overcoming tragedy, discovering hope and driving change through finding your purpose. When Julie is not advocating for her community, she stays busy as the owner of two successful bridal dress shops in Melbourne
Treasurer: Natalie McCloughan
Natalie has joined the GSNV Executive as our newly appointed treasurer 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 6 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.
Secretary: Marta Cifuentes Ochoa
I graduated last year from the Master of Genetic Counselling at The University of Melbourne, and I am currently working in the reproductive screening team at the Victorian Clinical Genetics Services. Part of my role at the reproductive screening team is helping people making sense of information at a sensitive period in their life and assist in using the information in a way that fits with their values.
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.
In addition to being a committee member and volunteer for 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 my role as a Secretary of The GSNV Committee and will keep working to make contributions towards an equitable and fair genetic health care sector.
General Committee Members:
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
Sean is a doctor training in the field of Urology and currently completing a PhD through the University of Melbourne in prostate cancer. He has been a passionate GSNV volunteer for many years inspired by his sister who has a rare genetic condition. Through GSNV, Sean has assisted in the formation of the Li Fraumeni Syndrome Association Australian/New Zealand chapter and has also volunteered for Epithelioid Hemangioendothelioma (EHE) rare cancer foundation. Sean is excited about the opportunity of being involved in the committee of such an important organisation.
Giorgina is in her final year of the Master of Genetic Counselling program at the University of Melbourne, as well as completing a Graduate Diploma in Advanced Psychology. She graduated from a Bachelor of Science (Genetics) and Arts (Psychology) from Monash University in 2016. She works as an Intake Assistant across the Austin and Monash Health services.
This is Giorgina’s third year on the GSNV Committee and has volunteered with the organisation for the past four years. She has been involved with support events, including Rare Disease Day, and projects, including a database of Australian and international support groups for individuals with rare and genetic conditions. She also volunteers with the Epilepsy Foundation as a project assistant for the inaugural Rare and Genetic Epilepsy Consumer Advisory Group.
The opportunity to become a GSNV Committee member carries a great personal and professional interest to me, as I am passionate about supporting individuals and families impacted by genetic conditions and empowering them to achieve a better quality of life. The position allows me to contribute knowledge and skills, which I have gained during my Genetic counselling studies, PhD candidature, as well as during my volunteering and employment in the disability sector.