About Fabry Australia
Fabry Australia is a patient-run non-profit organisation founded in 1994 around the kitchen table by Fabry patients. It is a registered charity supported by voluntary donations, educational grants, fundraising and is managed by a voluntary management Committee.
Fabry Australia’s mission is ‘Uniting and Supporting the Australian Fabry Community’. We do this by focussing on the goals, as referred to below, set out in the Fabry Australia Strategic Plan, which was developed by the management committee. All actions are documented at our committee meetings in accordance with the Australian Charities and Not-for-profits Commission (ACNC).
We share regular updates via our Fabry eNews which is produced quarterly and sent to members. Membership is free.
Fabry Australia Today
Fabry Australia is run by a committee dedicated group of volunteers from around Australia, all with a personal connection to Fabry disease. The committee meets 6 times a year via video conference. Once a year the committee connects in person at the Annual Patient Meeting to plan strategy, attend the National Patient Conference / Fabry Retreat and Annual General Meeting (AGM) with the members.
If you are interested in learning about the management committee work or would like to submit an application to be considered as a committee member, please contact us to obtain an Expression of Interest Form.
Fabry Australia Management Committee
Sheridan Campbell serves as Chair of Fabry Australia. She is pleased to be involved with such a proactive group, to improve the lives of those affected by Fabry disease. Her father Rick Butler, was the first in her family to be diagnosed with the Fabry gene and she, along with other family members, are affected. Sheridan lives with her husband and three young boys in Northern Victoria, where she works as an osteopath in her own practice.
Tanya has joined the committee of Fabry Australia with a desire to see the link between patients and the various pathways of medical management more connected to enable families to get cohesive support to assist those impacted by this disease. Tanya lives with her husband Brad who was diagnosed in 2016 after many years of health issues which were diagnosed independently and not considered to be related to each other. They have 3 children and a busy life in Perth WA. Professionally Tanya is a Chartered Accountant and the General Manager of national retail brand.
Linda is Treasurer of Fabry Australia and lives on a farm in Walgett North West New South Wales, 7 hours north of Sydney, with her husband Gavin. Linda is a Fabry disease patient and is currently receiving fortnightly ERT treatments. Linda and Gavin both actively assist with activities by Fabry Australia and advocated within her community to help others gain greater knowledge of Fabry disease. She feels privileged to be part of this very special group of people (committee and members of Fabry Australia).
Dianne Wallyn received the unexpected Fabry diagnosis in 2009 after her sister pursued a diagnosis to heart problems. A Brisbane cardiologist first suggested Fabry disease but was obliged to eliminate all other possibilities before requesting the genetic test. After her sister’s positive diagnosis, Dianne was told she had a 50 percent chance of having the disease. Ever the optimist she assumed the best, however several weeks later the call came in to say that she had also tested positive. Dianne is incredibly grateful for the support she received from Fabry Australia in those early days and is pleased to serve on the board to assist others with this disease. She calls the Sunshine Coast home and enjoys a laidback country lifestyle and she shares this with her husband and two very spoilt dogs
Gavin lives with his Fab-tastic wife Linda at Walgett in north west NSW. The pair are farmers producing a mix of wheat, barley, chickpeas and lamb. Previously Gavin & Linda operated Walgett Newsagency. Gavin first encountered Fabry after meeting Linda in 1998. Today “I am inspired to contribute towards improving the lives of sufferers and carers of Fabry”.
(Fab-Tastic = suffers Fabry and still awesome) Thank you Gavin for coming onto the Management Committee of Fabry Australia!
As both a patient and carer, I am passionate about supporting Fabry patients and their families. In particular, I am an advocate for holistic care which acknowledges the mental and emotional toll of living with this disease.
I am 27 years old, living and working on the West Coast of Tasmania after giving up my legal profession in Wollongong, NSW for a gig teaching mathematics to high school students. I absolutely love living in a small community and working with lively and curious kids.
My partner and I spend our weekends climbing mountains and chasing surf. If there is any positive impact from this disease, it’s the drive I have to live a fulfilling life and maintain a healthy lifestyle.
I hope I can be a voice for women living with this disease who have previously not been recognised.
Mark de Wolf
When in 1984 Mark’s mother found out that she had Fabry disease his brother and two sisters were also checked to see if they had it too. Mark and his sisters were positively diagnosed with it too at this time.”Much less than now, was known about the disease then and there wasn’t any treatment available. Feeling very healthy, it wasn’t till much later, that I started looking more into the effects and available treatments that were adopted. As my nephews in particular, were very much affected by the pains and other problems in more recent years, I started becoming involved and contacted doctors to check whether it would be wise to monitor my own situation too. I live a very active and busy social and work life in landcare, gardening and, although I am on Enzyme replacement therapy, I don’t feel as if I’m very much impacted by this. I hope that through raising awareness of this rare disease, more people can be informed and further research will help in improving people’s health.”
Sophie grew up in Sydney and studied a Bachelor of Genetics at the Australian National University in Canberra, graduating in 2021. She has since begun a Masters of Social Work and currently works at a youth mental health not-for-profit, Batyr.
She enjoys spending her spare time in nature, hiking, camping and swimming, but also loves pursuing creative hobbies and spending time with friends, cooking and playing board games.
Sophie was diagnosed with Fabry Disease at the age of 12 after having experienced significant abdominal pain and acroparesthesias while playing netball. She has a new mutation, so is the only one with Fabry in her family.
She hopes to use her experiences of living with a rare disease to educate and empower others, advocating for all those who have had, or may in the future have, similar experiences.
Fabry Australia’s Activities
Fabry Australia undertakes many activities, projects and programs to further support its membership.
Some of which include;
Fabry Australia National Fabry Patient Conference – biannual 2 day conference
Phone conversations with individuals that are newly diagnosed with Fabry disease
Fabry Australia’s Goals
Promote patient advocacy
Share information, knowledge, and resources
Promote and support research and development
Encourage active involvement with patients, medical community, partners, and industry groups
Raise awareness and understanding of Fabry within the community
Maintain financial and resource viability