SCWG Member
Amber is the Founder and Chairperson of the XYY Syndrome Association of Australia Inc. A member of Alike since 2019, she has built a strong connection with the community and is also a member of the Alike Minds Advisory Panel.
A mother of two, Amber began advocating for boys and men with XYY Syndrome after her eldest son’s diagnosis at age four. Her lived experience has shaped her passion for raising awareness, sharing information, and providing support for this rare condition.
Amber holds a Certificate IV in Training & Assessment, a Diploma in Community Services and Children’s Services, and brings over 15 years of experience in early childhood education and care. She’s excited to contribute her insight and lived experience to this group.
SCWG Member
Rachael Schwarz was diagnosed with Encephalitis in early 2019. After six months she managed to return to work and live her life reasonably normally despite neurological issues and side effects of the disease.
She is now involved with neurological organisations in Western Australia and after meeting another Encephalitis survivor for the first time in 2020 she established the support group Encephalitis Western Australia.
Her group supports those affected by Encephalitis on their new pathways as well as raising awareness for early diagnosis, effective treatment and rehabilitation.
SCWG Member
Piper Marsh is a committed advocate for the rare disease community, championing improved equity, awareness, and access to care across Western Australia. With a background in supporting families and clinicians, Piper now focuses on strengthening health systems and policy frameworks that enable better outcomes for people living with rare and undiagnosed conditions. She works collaboratively with government and health services to elevate consumer perspectives, improve diagnostic and care pathways, and drive system reform that enhances access and service delivery across regional Western Australia.
Outside of work, Piper is grounded by time with her family and enjoys an active, balanced lifestyle. She plays tennis on weekends, loves getting lost in a good book, and unwinds by spending time with her much‑loved dog and two cats.
SCWG Member
Helen brings passion and a strong personal interest in rare disease to the RGU Sector Working Group (SCWG). In 2017, following the birth of her youngest son and his diagnosis with a rare disease, Helen developed a deep commitment to rare disease research. She has since dedicated much of her spare time to supporting research initiatives in this field and has joined the RGU SCWG. Helen actively shares her knowledge and experience with other families and at rare disease events, offering guidance and support within the community.
In day-to-day life Helen is a Director of WS Collective, a boutique development company based in Mt Pleasant, WA. She also co-owns and operates the Albatross Lounge, an indoor golf and social venue that blends sport, hospitality, and community with her husband Dave Wilson.