Our Stories
Lysosomal Disease Conference and Expert Summit 2024 Wrap-Up
The recent Expert Summit and Patient Conference brought together patients, carers, and medical professionals in a spirit of unity and support. Speakers gathered in Melbourne to share insights on lysosomal diseases with a focus on genomics, rare disease diagnosis, and...
Sheridan Campbell
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Sheridan Campbell is the chair of Fabry Australia. She has two young sons with Fabry disease. “The biggest thing you battle with daily is fatigue. You just push...
Anne Hunter
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Anne Hunter lives in Melbourne and was diagnosed with Fabry in 1995. Her daughter, Monica was diagnosed with Fabry at nine and has lived much of her young life in...
Teena Rabjohns
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Teena Rabjohns lives on the Queensland south coast and was diagnosed with Fabry at 22 years old. “I had a head start on my Fabry being picked up and treated, much...
Sarah Marsh
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Sarah Marsh, 48, lives in Sydney’s Sutherland Shire and manages the local council’s sporting and cultural venues. She was diagnosed with Fabry disease in 2017. “I...
Trevor Sopovski
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Trevor lives in Breamlea on the Victorian surf coast and was diagnosed with Fabry in 2022. “This condition has made me relook at my life. My heart stopped beating at...
Gavin & Linda Schmetzer
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Gavin and Linda Schmetzer run a grain growing farm in Walgett, NSW. Linda was diagnosed with Fabry disease in 1987. She volunteers as the Treasurer of Fabry...
Simon Burrows
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Simon Burrows lives north of Perth, WA. He was diagnosed with Fabry disease in 2012 and has two teenage daughters, both with Fabry. “You learn to live with it. I’m...
Dr Charles Denaro
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Dr Charles Denaro is an internal medicine physician and clinical pharmacologist at Royal Brisbane and Women’s Hospital. He’s been treating Fabry patients since 2002....
Ashleigh Clark
Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Ashleigh Clark lives on Sydney’s northern beaches and teaches children’s dance. She’s had Fabry disease since birth. “It’s always in the back of your mind, but I’ve...