ANZ Fontan Advocacy Committee
The Australian and New Zealand Fontan Advisory Committee (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, parents/guardians of adults/children with a Fontan circulation, health professionals and other individuals who are involved in the Fontan community. Members are from various locations in Australia and New Zealand.
To optimise health and support for children, young people, and adults with a Fontan circulation.
We seek to achieve consistency of care, represent a whole journey view and advocate for children, young people, and adults with a Fontan circulation.
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)
Pat was diagnosed with a single ventricle condition when 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 has a professional background in politics and higher education and is currently studying for a PhD in philosophical bioethics at the Monash Bioethics Centre. 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)
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.
Adults living with a Fontan circulation
- Brian Rose (QLD)
- Jessamy Neilsen (Auckland, NZ)
Parent of a child with a Fontan circulation
- Markelle Archer (Wellington, NZ)
- Cecilia Donovan (WA)
- Belinda Frank (WA)
- Rachel Maree (QLD)
Allies and associates
- Rachel Cordina (Cardiologist and Chair, ANZ Fontan Registry, NSW)
- Tracy Stanley (HeartKids Family Support Manager, Victoria)
- Yves d'Udekem (Paediatric cardiac surgeon, Washington DC, USA)
- 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 Ranson (Adult living with a Fontan circulation, NSW)