Dialog Box

HeartKids

Australian and NZ Fontan Advocacy Committee OLD

ANZ Fontan Advocacy Committee

The Australian and New Zealand Fontan Community (ANZFAC) was established in September 2014, following the inaugural Fontan Education Day, with support from the ANZ Fontan Registry. ANZFAC now operates as a subcommittee of HeartKids Australia (HeartKids Ltd) and is an affiliate/partner of HeartKids NZ.

We are a volunteer committee comprised of adults with a Fontan circulation, family of people with a Fontan circulation, health professionals and other individuals involved in the Fontan community. Members are from various locations in Australia and New Zealand.

The agenda for ANZFAC’s next meeting can be viewed online.

Joining the ANZFAC Committee

ANZFAC is currently seeking Expressions of Interest for new Committee members from all people in Australia and New Zealand affected by the Fontan circulation – which could be you!

If you would like more information about the ANZFAC Committee, see our current members or email anzfac@heartkids.org.au.

If you are interested in joining ANZFAC, please complete an Expression of Interest form.

Mission Statement

To optimise health and support for children, young people, and adults with a Fontan circulation.

Vision

We seek to achieve consistency of care, represent a whole journey view and advocate for children, young people, and adults with a Fontan circulation.

Objectives

ANZFAC strives to:

  • Be a representative voice for the Fontan community;
  • Communicate openly with the Fontan community;
  • Raise awareness about the Fontan circulation among medical professionals, government bodies, funding bodies, support organisations and the general public;
  • Increase ongoing education and support for people with a Fontan circulation and their families;
  • Identify areas where care for people with a Fontan circulation could be improved; and
  • Advocate for change to improve care for people with a Fontan circulation.

ANZFAC Committee & Auxiliary Members

Pat McConville (TAS)

Chairperson

Pat was diagnosed with a single ventricle condition after he was born and had a Fontan procedure at two years old at the Royal Children's Hospital, Melbourne. He grew up and lives in Hobart, Tasmania, with his partner and young daughter.

Pat is currently the Division Secretary of the National Tertiary Education Union (NTEU) Tasmania and is completing his PhD in philosophical bioethics at the Monash Bioethics Centre. Among other things, he has published on the phenomenology of congenital illness. Attending a Fontan Education Day gave him his first opportunity to meet other people with a Fontan circulation, and he comes to ANZFAC with a strong belief in the importance of building and giving voice to the Fontan community.

Jonathan Mackley (VIC)

Deputy Chairperson

Jonathan is an adult living with a Fontan circulation having had the Fontan operation in 1981 at the Royal Children’s Hospital in Melbourne where he lives. He was born with complex heart disease: hypo-plastic right heart, double inlet left ventricle (DILV) and had a dual chamber pacemaker fitted in 2014. He is a parent of two school aged children and works full time in the field of Communications and Change Management.

After volunteering with HeartKids as a Board Member (2013), Jonathan joined ANZFAC out of a desire to help improve the quality of life for people like himself through providing connection, support and advocacy. He was delighted and honoured to be involved as the initial Chairperson and has been an active member of ANZFAC since 2014.

Committee Members
Adults living with a Fontan circulation
  • Brian Rose (QLD)

Brian is an adult living with a Fontan circulation having had the operation in 1999 at the Royal Children’s Hospital. He has been working with ANFAC since its inception in 2014 and has a passion for improving outcomes and quality of life for those with congenital heart disease. Brian is a Registered Nurse who works with Paediatric Patients in Intensive Care. He holds a Master of Critical Care Nursing degree and is currently completing his medical degree.

  • Jessamy Neilsen (Auckland, NZ)

Jessamy has been a member of ANZFAC since 2015 after feeling inspired by the energy of the Fontan community at education days in 2014 and 2015. Her desire to join was driven also by the need for ANZFAC to have New Zealand representation. She considers it a privilege to help represent our community through this Committee.

Parent of a child with a Fontan circulation
  • Cecilia Donovan (WA)

Cecilia has been involved with HeartKids in various roles since 1996. During her 25 years at the organisation, Cecilia has developed and implemented many services and programs for HeartKids in WA, including the in-hospital program and regional outreach program.

For much of her time at HeartKids, Cecilia’s main roles have been as State Manager of WA and in family support. Cecilia is a bereaved parent and has a young adult heart kid. Due to her lived experience, she understands the challenges and triumphs many families encounter when living with a person with congenital heart disease.

In 2004 Cecilia was nominated for the Lotterywest Community and Services Industry awards, and nominated in 2010 for an Australian of the Year award. Her passion and advocacy for HeartKids also saw her as a finalist in the 2011, Pride of Australia awards. For her long-term commitment to HeartKids Cecilia was made an honorary life member of HeartKids in 2011.

Cecilia’s life, like many others in this fast-paced world, is full of fun and challenges. In her down-time she loves watching movies, meditating, and being with friends and family.

  • Belinda Frank (WA)

Belinda is mum to two adult children. Her second child was born with Congenitally Corrected Transposition of the Great Arteries, Hypoplastic Right Heart, Pulmonary Atresia, VSD and had his Fontan at the Royal Children’s Hospital in 2004, the family moved to Western Australia from Victoria in 2009.

She was formerly a board member of HeartKids Victoria, HeartKids Western Australia and HeartKids Australia. Passionate about supporting consumers, community members and researchers to work effectively in partnership, Belinda now works as the Community Engagement Manager at Telethon Kids Institute in Western Australia. She joined ANZFAC in 2018 and is the ANZFAC representative on the ANZ Fontan Registry Steering Committee.  

Allies and associates
  • Rachel Cordina (Cardiologist and Chair, ANZ Fontan Registry, NSW)

Dr Rachael Cordina is a clinical academic cardiologist with special interests in Adult Congenital Heart Disease, Pulmonary Hypertension, Indigenous Health, Exercise Physiology and Maternal Cardiology.

Currently, Rachael works in the Adult Congenital Heart Disease Service and Pulmonary Hypertension Service at Royal Prince Alfred Hospital in addition to her role on the General Cardiology team and the Aboriginal Medical Service. She is Chair of the ANZ Fontan Registry and a Senior Lecturer at University of Sydney where she coordinates post-graduate research. Rachael has established Congenital Heart Outreach Clinics (Nowra, Port Macquarie, Canberra, Orange) to improve access to specialised heart care for people who live outside Sydney.

  • Tracy Stanley (HeartKids Family Support Manager, Victoria)

Tracy has worked in family support at HeartKids for 16 years. Her 18-year-old daughter was born with multiple heart defects and has been a patient of The Royal Children's Hospital since birth.

Tracy is passionate about patient and family-centred care and has participated in numerous projects and committees. She is chair of The Royal Children’s Hospital Family Advisory Council, a member of the Heart Failure Patient Advocacy Committee and has been a member of ANZFAC since 2014. 

  • Yves d'Udekem (Paediatric cardiac surgeon, Washington DC, USA)

Dr Yves d’Udekem is a paediatric cardiac surgeon who worked for 17 years in the Royal Children’s Hospital in Melbourne. His main clinical areas of specialties are surgeries of babies and children born with a single ventricle, valve repair and heart failure surgery including heart transplantation and artificial hearts. His whole life has been focused on improving survival and well-being of those with a single ventricle.

He founded the Australia and New Zealand Fontan Registry which has become rapidly the main source of information for those born with a single ventricle. It is during the first education day of the registry that the idea of the Advocacy group emerged. He has now moved to Washington DC, US where he is building the International Fontan Registry.

Auxiliary Members
  • Markelle Archer (Parent of a person with a Fontan circulation, Wellington, NZ)
  • Annie Fisher (Parent of a child with a Fontan circulation, NSW)
  • Ingrid King (Database Manager, Heart Research, Murdoch Children’s Research Institute, VIC)
  • Karen Kool (Parent of a child with a Fontan circulation, NSW)
  • Louise Pickford (Adult living with a Fontan circulation, SA)
  • Gemma Moon (Adult living with a Fontan circulation, NSW)
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