Previous board members who we thank greatly for their contribution.
Chris Higgins, Chair 2017–2018
Chris is an experienced leader and manager of health, disability and social services organisations. From 2010 to 2012 Chris chaired the disability chief executives forum – a network of over twenty leaders of membership based, advocacy focused, disability support organisations in New Zealand – to which he remains an active contributor. Chris joined the NZORD board in November 2014.
Lucy Elwood, Chair 2014–2017
Lucy is a public and commercial lawyer at Elwood Law, a Wellington based law firm. 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 and is passionate about improving health outcomes. In addition to being a trustee of NZORD, Lucy is chair of a school Board of Trustees, a trustee of Digital Media Trust, a director of Domain Name Commission Limited and a director of Unison Networks Limited. She lives in Wellington with her husband and four children, and enjoys walking Wellington’s hills with her spaniel.
John Forman, NZORD Executive Director 2001–2015
John is a parent of adult twins who both have a rare genetic disorder, Alpha-Mannosidosis. He has a long history as a volunteer and as a paid worker in disability services and related advocacy agencies. He built NZORD from scratch, beginning in 1999 with a small band of helpers working from the kitchen table at his home, organising the inaugural conference for NZORD in September 2000, then taking on the role of executive director when formal incorporation occurred in June 2001. In June 2015 John left NZORD to pursue a wider range of rare disease and health interests, with particular focus on several international rare disease networks that he helped to establish during his time with NZORD.
A consultant with Chapman Tripp, Linda specialises in public law and litigation. She also works as a facilitator and broadcaster. Prior to becoming a lawyer Linda worked as a journalist for twenty years, including as TVNZ's Political Editor and host of Face the Nation and Radio New Zealand's Nine to Noon. She lives in Wellington and is the mother of twin boys. She was a founding trustee and prior to her departure from the board, held the role of interim chair from 2013 to 2014.
Chris Hodson QC, NZORD Board Chairman 2001–2013
Chris practised as a barrister and solicitor in Masterton and Wellington before joining the independent bar in 1990. He has for 20 years specialised in medico-legal cases. He appeared as counsel for the Life Sciences Network before the Royal Commission on Genetic Modification and was elected as chair of NZORD in 2001. He lives in Wellington and is married to the Hon Justice Lowell Goddard; they have a grown-up family of four and four grand-children.
Dr Michael Sullivan MB ChB, DCH, FRACP, PhD
Michael is a Consultant Paediatric Oncologist. He has a particular research interests in the molecular genetics of childhood cancers and developmental disorders in children. Michael was NZORD's medical advisor, from the early days of NZORD until his departure for Melbourne in 2013.
Anita is the mother of two young children with Fragile X Syndrome. She has a BSc in Geography and a Diploma in early childhood education. Anita is involved in several community organisations, including a New Mothers' Support Group, the Autistic Association and the NZ Fragile X Trust, and was part of the NZORD board until 2013.
Chris was a founding Trustee of NZORD and supported us through till she resigned from the Board in April 2008. She was a former national co-ordinator of the Dystonia Patients’ Network.
Richard is the founder and former editor-in-chief of leading technology blog ReadWrite.com. Richard founded ReadWrite (then called ReadWriteWeb) in 2003 and it went on to become one of the world’s most popular blogs. In December 2011, ReadWrite was acquired by San Francisco-based SAY Media. Richard left the site in October 2012 to begin work on his first book, on the topic of consumer health technology. He lives in Wellington. Richard held the role of trustee in 2013 and 2014.
Gillian has a history of involvement as an arts patron and supporting voluntary organisations. Previously she was on the board of Mary Potter Hospice and was also on the Middlemore Hospital Research Trust board until 2005. She is joint Patron of IHC New Zealand. Gillian is the co-ordinator of the New Zealand Rett Syndrome support group. Her daughter Kristen was diagnosed with Rett syndrome and died at age 26. In her spare time, Gillian has revegetated a wetland that is now a natural heritage area. She was one of the founding trustees of NZORD, and served for many years until her departure from the board in July 2014.
Gill is CEO of VSA. Before this she has been Director General of IPPF, an NGO that provides advocacy, education and health services globally and was Executive Director of the Family Planning Association of New Zealand, and Family Planning International. Prior to this she was Assistant Vice Chancellor Equity and Human Resources, at Victoria University and earlier taught at secondary and tertiary levels. Gill was made a Commander of the British Empire (CBE) for services to international health and women’s rights and a Member of the New Zealand Order of Merit for services to family planning and literature in 2005. Gill has written several books on New Zealand writers, and been a freelance broadcaster, and consultant. She continues to serve on several boards in New Zealand and overseas, and to speak at conferences on a range of issues related to human rights and social justice. Gill was on the board of NZORD from 2013 until 2014.