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Fabry Australia Committee

Fabry Australia (FA) is a not-for-profit Patient Organisation that operates on a membership model. It is constituted as an Incorporated Association and received its certificate of Incorporation on 22nd July 1994. In accordance with the Associations Incorporations Act (1981), Fabry Australia complies to a number of important statutory obligations. The current members of Fabry Australia Inc. Committee are as follows:

Managing Director

Megan Fookes | Fabry Australia

Megan Fookes OAM (NSW)

Megan Fookes, OAM, is Director of Fabry Australia.  Her late father waited 48 years to receive his diagnosis of Fabry disease. Megan's parents are co-founders of Fabry Australia and she has been actively involed in the group since1999. Megan is a qualified teacher working in bother the public and private sectors of Victoria and New South Wales for over 10 years. Megan and her son have Fabry Disease.

Megan Fookes, was recently awarded the Medal of the Order (OAM) on Australia Day.   Megan has dedicated the award to her late father and to all adults, children and families who are doing their very best living with rare diseases including Fabry Disease. Megan was a co-founder of Rare Voices Australia and served on their Board and was employed as founding Executive Director for 5 years. She continues to support rare diseases as Vice President on an international alliance - Rare Diseases International.

Chair

Sheridan Campbell | Fabry Australia

Sheridan Campbell (VIC)

Sheridan Campbell is currently the 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 Christopher was born. Lea became very ill with pre-eclampsia whilst pregnant with her first child. However 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." - Mark de Wolf.

 

Executive Member

Megan Chant | Fabry Australia

Megan Chant (NSW)

"My name is Megan Chant, I am 19 years old University student and I became apart of the Fabry board last year. While I do not have Fabry myself, both my mother (who is also a Faby board member) 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."

 

 

 

Executive Member

Linda Schmetzer  

"My Name is Linda Schmetzer. I live in Walgett North West New South Wales 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 would like to become a member of the Fabry Australia Committee or serve on a working group, please contact us at secretary@fabry.com.au OR director@fabry.com.au  Fabry Australia is looking for people who have the passion and drive to support this important patient orgnaisation to help improve the lives of those living with this rare condition.