Fabry Australia Management Committee
The Fabry Australia Management Committee is a dedicated set of volunteers, many with a personal connection to Fabry disease. The Committee meet 6 times a year by teleconference (toll free) including once a year face to face 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 to submit
an application to be considered as a Committee member, please contact Fabry
Australia at email@example.com to obtain an Expression of Interest Form.
Sheridan Campbell serves as Chair of the Management and Executive Committees 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.
Linda is Treasurer and serves on the Management and Executive Committees. 'My Name is Linda Schmetzer. I live in Walgett North West New South Wales, which is 7 hours north of Sydney with my husband Gavin. I am a Fabry disease patient. I have been receiving the lifesaving treatment which I have fortnightly at my local hospital. I am looking forward to being able to assist in activities that the Fabry committee run to help others gain greater knowledge of Fabry disease. I feel privileged to be part of a very special group of people'.
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 works full-time for an author in Buderim. A recent tree-change took her further out of town, swapping the seaside for a laidback country lifestyle and she shares this with her husband and one very
spoilt dog. We are pleased to have Dianne's voluntary support as Committee Secretary.
Megan Fookes OAM
Megan Fookes, OAM, formerly Managing Director at Fabry Australia now serves on the Management Committee. She is passionate about serving Fabry community and has been involved since its inception in 1994 alongside her parents who were co-founders of the group. Megan, formally a school teacher lives with her family in Sydney and received a Medal of the Order of Australia (OAM) on Australia Day 2016 for her services to the rare disease community which she's dedicated to her late father and the Fabry community.
Anne is glad to be involved alongside a passionate and caring committee who are working to help raise awareness and support Fabry. Anne has a strong Fabry presence in her family on her mother’s side. Anne has Fabry along with her adult daughter, Monica. Anne lives in Melbourne with her husband and two daughters.
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."
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!
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.