Monica Ferrie

Monica is the Chief Executive of the Genetic Support Network of Victoria, Council member of Rare Disease International, Board Director – Asia Pacific Alliance of Rare Disease Organisations, Director of Advocacy Beyond Borders, and Melbourne University Fellow. Monica is inspired by potential and possibility, for individuals, teams and community. Her work is targeted to discover, facilitate and achieve them in a number of capacities.

Sarah Powell

From a background in banking and events management, Sarah’s breast cancer diagnosis at age 29 had a profound impact on her life and family. It led her on a journey to educate, advocate and positively impact Australia’s cancer community, particularly those who experience hereditary cancer.  As a high-risk individual with a BRCA1 mutation, Sarah understands what’s important to the community and constantly strives to make an impact. She is the CEO of Pink Hope.

Joel Taggart

First and foremost, Joel is the father of 5-year-old Shiloh. She was diagnosed with an ultra-rare condition (TCF20 gene mutation) in 2022. With only a handful of diagnosed cases in Australia, there are no support groups, nor local research being undertaken on this condition, so it can be a lonely existence. Given his lived experience, Joel is passionately trying to improve the mental health services offered to families living with a rare disease or undiagnosed condition, and is studying Psychology (Honours) at Adelaide University. His aim is to complete his Masters of Psychology in the next few years to enable him to become a Registered Psychologist. This will allow him to practice Psychology and most importantly, be able to directly support the mental health and resilience of families living with a rare disease. Joel is an enthusiastic Consumer & Community Advocate, with a number of organisations, however closest to his heart are the roles of Co-Chair of the SWAN Aus Community Advisory Group and his role as a Community Champion with PANDA (Perinatal Anxiety and Depression Australia).

Agnes Nsofwa

Agnes Nsofwa is an entrepreneur, registered Nurse, published Author, public speaker, and mentor, founder of Australian Sickle Cell Advocacy Inc. She founded ASCA in 2018 after her daughter was diagnosed with Sickle Cell Disease (SCD) with the main aim of supporting other people. Agnes is an author of a children’s book on SCD and later turned the book character into a comfort doll for children experiencing pain. She also brought over 50 people from different parts of the world to write about their experiences living with sickle cell disease in two books.

Julie Cini

After losing two daughters to the disease, Julie has spent 20 years campaigning and advocating for better access to treatment for those living with Spinal Muscular Atrophy (SMA).  Her efforts have resulted in access to 3 high cost treatments  for the community here in Australia.  She also campaigned for a national newborn screening program for SMA and genetic testing for SMA, Cystic Fibrosis and Fragile X to be fully reimbursed through Medicare. Julie was the founder and former CEO of SMA Australia, is now a Director of  Advocacy Beyond Borders, and runs her own wedding business.

Rosiel Elwyn

Rosiel Elwyn is a non-binary, neurodivergent post-doctoral researcher (neuroscience and mental health), as well as a lived experience researcher and consumer advisor. Rosiel’s work spans autism, adolescent brain development, psychosis, eating disorders, trauma/PTSD, suicidality, self-harm, neurodivergence and LGBTIQ+ intersections, physical health in people with mental illness, and health equity. Rosiel has particular experience in co-design and co-creation in research, and is interested in the need for genetic counselling in mental health services such as in eating disorders, neurodivergence, and schizophrenia – conditions of which research has indicated phenotypes may differentiate individual characteristics and trajectories, treatment response/non-response, and may indicate need for different treatment pathways.

Rosiel brings the experience of being an identical twin, discordant for multiple mental and physical health conditions, with a nuanced understanding of how complex it can be for families and clinicians to understand genetic inheritance and epigenetic contributions to illness development.

Rosiel is also passionate about the need for screening and engagement with cancer care for people with mental illness, and the need to address barriers to accessing screening and treatment (e.g., diagnostic overshadowing, stigma in medical settings, medical trauma). As a non-binary, pansexual person, Rosiel is often involved in research on LGBTIQA+ identity-affirmative healthcare, and working with health services to discuss equity and inclusivity in the provision of service for LGBTIQA+ people. Rosiel loves collaborating and learning from others and are happiest when working in partnerships on exciting projects.