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 4-6 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 Committee work or to submit an application to be considered as a Committee member, please contact Fabry Australia.
Megan Fookes OAM (NSW)
Megan Fookes, OAM, is employed 2 days a week at Fabry Australia serving as the Managing Director of Fabry Australia and is passionate about serving the Fabry disease community of Australia serving on the Committee since 1999. Megan's parents were co-founders of Fabry Australia and she is now an Honorary Life Member of Fabry Australia. Megan is a qualified school teacher and lives with her husband and two teenage children in Sydney. Megan received a Medal of the Order (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. Megan was a co-founder of Rare Voices Australia serving as their founding Executive Director for 5 years and was a Director on Rare Diseases International.
Sheridan Campbell (VIC)
Sheridan Campbell serves as Chair of Fabry Australia and 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.
Lea Chant (NSW)
Lea has been on the Australian Fabry Committee since 2000. It was during her time as President in 2006 and 2007 that she was instrumental in organising Fabry Australia's first Inaugural Conference in 2007 which was held in Brisbane. Lea and her family had not heard of Fabry disease until after her son was born. Lea became very ill with pre-eclampsia whilst pregnant with her first child. Her proteinuria levels had not stabilised and it was via a kidney biopsy that Lea’s specialist diagnosed her with having Fabry disease.
Linda Schmetzer (NSW)
"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".
Anne Hunter (VIC)
Anne Hunter is Secretary of Fabry Australia and works one day a week in the office as Administrative Support. 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 as well as her daughter who receives Enzyme Replacement Therapy. Anne lives in Melbourne with her husband and two daughters. Anne also works part time as administrative support at Rare Voices Australia.
Dianne Wallyn (QLD)
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
Megan Chant (NSW)
Megan Chant (daughter of Lea Chant) is 19 years old and a University student. Megan joined the Management Committee in 2016. Megan doesn't have Fabry herself, but both her mother and her brother are diagnosed with Fabry disease. From a young age she has been aware of rare diseases, particularly Fabry disease. After watching first hand the impact on her family, she wanted to help. Fabry Australia is very fortunate to have a new young dedicated member of its Committee and pleased she has joined the team at Fabry Australia."
Mark de Wolf (NSW)
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 Schmetzer (NSW)
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)