NZORD is headed by a Chief Executive and assisted by a team of dedicated staff. NZORD is steered by a Board of Trustees.
Olivia Baddeley, Acting Chief Executive firstname.lastname@example.org
Ben Chapman, Webmaster email@example.com
Lyndal Bremer, Fundraising and Communications Manager firstname.lastname@example.org
Anne Merritt, Administration Manager email@example.com
Daniel Webby, Support Group Liaison firstname.lastname@example.org
NZORD board of trustees
Lucy Elwood, Chair
Lucy is a public and commercial lawyer at Elwood Law, a Wellington based law firm. She is wife to one, mother to three, and step-mother to one. Lucy became a trustee of NZORD in 2013. Prior to that Lucy assisted NZORD with submissions to various Ministries, Pharmac, the Ombudsman and other bodies. Lucy has a science degree (majoring in biology) as well as a law degree. She has a deep interest in scientific research. Lucy is currently Chair of the Board of Trustees of Ngaio School.
Bronwyn Gray QSM, JP
Dr Mike Eccles is Associate Professor in Pathology at the University of Otago, with a background in Biochemistry and Genetics. His laboratory employs seven researchers and is focused on the genetics of cancer and kidney diseases in childhood. Outside work, his time is mostly occupied with family; his wife works as a General Practitioner, and they have three school-age children. Mike is a founding trustee of NZORD.
Martin has an adult son with a rare genetic skin condition, Epidermolysis Bullosa, EB, that causes the skin to blister and tear with the slightest friction. As well as hours every day of bandaging and caring for his son when he was younger, Martin has spent years negotiating the health and education systems on behalf of his son and the EB support group DEBRA NZ. Martin is a partner in Red Design Architects with his wife Anna Kemble Welch, and a part time tutor in design at the School of Architecture. He is also involved in organising the Newtown Festival each year, and assisting the Newtown Resident's Association on urban design and resource management issues and with community liaison while the new Wellington Regional Hospital was being designed and built. Martin is a founding trustee of NZORD.
Stephen has been the Curekids Professor of Paediatric Genetics at Otago University, since 2003. He studied Medicine and specialised in Pediatrics and then subspecialised in Clinical Genetics. From 1999 – 2002 he was Nuffield Medical Fellow at the Institute of Molecular Medicine at Oxford University, studying the genetic basis of a set of genetic disorders characterised by severe life-limiting malformations in children. His work in this area has led to the implication of several genes, in the generation of malformations in children, with a particular focus on conditions that affect the skeleton and brain. He was awarded the Health Research Council’s Liley Medal for outstanding contributions to medical research in 2010. Stephen continues to be an active clinician, staffing clinics throughout the South Island, in addition to teaching genetics to science and medical students in Dunedin. He joined the board of NZORD in 2013.
Bice was the Chief Executive of Skylight a not for profit charitable trust until February 2015. Bice was Skylight’s first staff member when it began in 1998. Skylight was the first organisation in New Zealand to focus specifically on the multifaceted impact that change, loss and grief has on children, young people and their families. Bice focuses her activities in areas where there is a need for a voice to be heard around the challenges that exist within the area. Bice is on the board of The Perinatal Mental Health Trust NZ, she is the Deputy Chair of Wellington SPCA. She is a Lay representative on the Osteopath Review Committee and is a Member of the Vocational Committee of the Wellington Rotary Club. Bice joined the NZORD board in November 2014.
Chris is an experienced leader and manager of health, disability and social services organisations. Chris is the Chief Executive of the Muscular Dystrophy Association of NZ, a role he has been in for over six years. Chris is also the Chief Executive of the Neuromuscular Research Foundation Trust, he has held this role since March 2011. From 2010 to 2012 Chris chaired the disability chief executives forum – a network of over twenty leaders of membership based, advocacy focused, and disability support organisations in New Zealand – to which he remains an active contributor. Chris joined the NZORD board in November 2014.
Joanna is employed full time as Senior Finance Manager at Waitemata DHB, based at North Shore Hospital in Auckland, and has been in the role for just over three years. Joanna is a trustee of Panacea Arts Charitable Trust (Trading as Spark Centre for Creative Development) since February 2013, and is also a trustee on the Board of NZORD since late 2014. Joanna is a member of the Institute of Chartered Accountants (CAANZ), and a member of the Institute of Directors (IOD). Prior to joining the DHB Joanna held senior finance roles in commercial organisations spanning the Health and Primary Manufacturing sectors.
We are also very grateful to our previous trustees.