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Fabry Australia Committee

The Fabry Australia Committee is a dedicated set of volunteers, all with a personal connection to Fabry disease including being diagnosed with Fabry themselves and having family members with Fabry disease. The Committee meets 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 Meeting and Annual General Meeting (AGM) with the members. For information on Fabry Australia Commmittee Roles and Responsibilities please contact the Fabry Australia office.

Managing Director

Megan Fookes | Fabry Australia

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 sits on the Council of Rare Diseases International.

Chair

Sheridan Campbell | Fabry Australia

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. 

 

Treasurer

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.

Secretary

Anne Hunter | Fabry Australia

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.

 

Executive Member

Ross Clark | Fabry Australia

Ross Clark (NSW)

Ross Clark is currently an Executive Member of Fabry Australia. Ross’s Fabry journey started in the mid 1990’s when he was the first person in his family to be diagnosed with this rare condition. Ross has been battling kidney failure since 2010.  He was lucky enough to receive a kidney transplant in August 2015 and is currently recovering from the transplant and some associated issues.  Ross’s daughter also has Fabry Disease. Ross lives with his wife and 2 children in Sydney.

 

 

Executive Member

Mark de Wolf | 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." 

Executive Member

Megan Chant | Fabry Australia

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."

 

 

 

Executive Member

Linda Schmetzer  

"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".

 

If you are interested in serving on the Fabry Australia Committee or a working group, please contact Fabry Australia at secretary@fabry.com.au OR director@fabry.com.au   Fabry Australia is looking for people who have the passion and desire to Fabry Australia and to help improve the lives of those living with Fabry disease.