Fabry Australia Management Committee
The Fabry Australia Management Committee is a dedicated set of volunteers, all 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 Secretary Anne Hunter at email@example.com
Megan Fookes OAM (NSW)
Megan Fookes, OAM, is 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 teeenage children in Sydney. Megan received a Medal of the Order (OAM) on Australia Day 2016 which she's dedicated to her late father and the Fabry community. Megan was a co-founder of a Rare Voices Australia serving as their founding Executive Director for 5 years and served on the Council for Rare Diseases International for two years.
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.
Sue Kapperer (Vic)
Though none of my family members is affected by Fabry Disease, my best friend and two of her children are, which is why I wanted to be part of Fabry Australia. As a BAS Agent & Small Business Consultant I am hoping my skillset will help with the smooth running of the organisation. As Fabry Australia supports those who suffer from the disease, and their family members, I am honoured to have a role which will contribute to all of those who are affected.
Anne Hunter (VIC)
Anne Hunter is Secretary of Fabry Australia and works part time in the office as the Administrative Support. She is glad to be involved with such 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 ERT. Anne lives in Melbourne with her husband and two daughters.
Dianne Wallyn (Qld)
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.
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."
Megan Chant (NSW)
"My name is Megan Chant, I am 19 years old and a University student and I became apart of the Fabry board in 2016. While I do not have Fabry myself, both my mother (who is the Treasurer on Fabry Australia's Committee) and my brother are affected by it. From a young age I have been aware of rare diseases and after watching the impact on my family, I wanted to help. I am pleased to join Fabry Australia."
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
Executive Member 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 Support Group’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 proteinia levels had not stabilised and it was via a kidney biopsy that Lea’s specialist diagnosed her with having Fabry disease.