CONSUMER ADVISORY GROUP

Monica Ferrie

Monica Ferrie

Chair

BIO

Monica Ferrir

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.

Agnes Nsofwa

Agnes Nsofwa

Member

BIO

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.

Sarah Powell

Sarah Powell

Member

BIO

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.

Caitlin Howley

Caitlin Howley

Member

BIO

Caitlin Howley

Caitlin Howley is a Project Officer in Genomic Research Policy with Australian Genomics. Her interest in genomics stems from her experience living with a genetic condition. She is also a community representative with the Genomics in Schools Steering Committee at the Genetic Support Network of Victoria (GSNV) and has experience working in the medical technology sector.

Julie Cini

Julie Cini

Member

BIO

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.

Felicity Johnson

Felicity Johnson

Member

BIO

Felicity Johnson

Felicity is pursuing postgraduate studies in genomic diagnostics, a passion she discovered while studying animal science and realising its potential to revolutionise medicine. Her journey took a personal turn when she was diagnosed with leukodystrophy during a routine MRI. Despite the MRI results suggesting a bleak prognosis, her symptoms did not align, prompting further genomic testing. This revealed an entirely different prognosis, likely influenced by epigenetics. With a profound enthusiasm for diagnostic genetics, Felicity aims to propel the advancement and adoption of biotechnology, particularly in the realm of epigenetics, within medical and industrial domains.