Our committee meets on a bi-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 skills-based and regularly reviewed. Expressions of interest can be submitted through our contact us page, or you can fill out an application here: Committee Recruitment Document and submit to info@gsnv.org.au.
Committee Members:
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. 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. I come from a family that all work 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.
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, 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 significant impact on the PBAC and highlighting the severe unmet need within the SMA community for treatment. She continues to work with policy-makers to ensure patient evidence is valued and addressed as part of the submissions.
Some of Julie’s achievements are:
✓ 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 newborn 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 are 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: Giorgina Maxwell
Secretary: Marta Cifuentes Ochoa
I am committed to contributing to the GSNV committee, where I began as a volunteer and now serve as Secretary, a role I enjoy for the opportunity it gives me to stay organised (or at least try!), support GSNV, and connect with colleagues and friends within the community.
I work as an Associate Genetic Counsellor in the Reproductive Genetics team at Victorian Clinical Genetics Services (VCGS), supporting individuals and couples through reproductive screening and prenatal diagnosis. Alongside my clinical role, I enjoy doing research and supervising students. Outside of work, I enjoy exploring the great outdoors, visiting my large family in Spain, and doing crafty things.
General Committee Members:
Kerry Finley
Having been a previous employee of the GNSV, I
have first-hand experience of the important and
varied work that the organisation carries out.
Through the role of board member, I find that I learn so
much about the broader genomics space and I
am proud to be a part of informing the strategic
direction of the GSNV. It is clear that over the years
the GSNV has become a strong, well respected
leader in this space and this is predominantly due to
the hard work of the GSNV team.
Caitlin Howley
Caitlin is passionate about the translation of biomedical research to improve patient outcomes. Her interest in genetics stems from her lived experience as an individual with a genetic condition.
Caitlin graduated from the Bachelor of Biomedical Science (Scholars) at Monash University in 2019. She gained industry experience in the medical technology sector by working as a Clinical Research Associate with the digital health company Atmo Biosciences.
Caitlin is a member of the recently established Industry Genomics Network Alliance (InGeNA) Consumer Advisory Group. She is also a member of the GSNV Youth Lived Experience Panel for a pilot study that will be evaluating the feasibility of the ‘Science Within Us’ genomic education program.
Caitlin has volunteered as a community representative with the GSNV Genomics in Schools Steering Committee since 2022, and she was part of the panel for the GSNV Rare Disease Day 2024 event. She also volunteers with the Chronic Illness Peer Support (ChIPS) program at the Royal Children’s Hospital as a Peer Leader and co-lead of the Advocacy and Justice, Equity, Diversity and Inclusion (JEDI) Committee.