New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
NZORD is headed by Executive Director John Forman, and steered by a Board of Trustees.
John Forman, NZORD Executive Director
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 is enthusiastic about the use of modern technology to reduce isolation and improve the health of those affected by rare diseases. John is on the Board of several local and international rare disease and advocacy organisations.
NZORD Board of Trustees
Lucy Elwood, Acting 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 and she is involved in numerous groups. In her free time, Lucy likes to explore the hills around Wellington with her springer spaniel.
Bronwyn is a Justice of the Peace for New Zealand. Previously she was a Trustee for the Auckland Women's Loan Fund. She was a Secondary School English teacher for 25 years in Auckland and Wellington. Her daughter Lisa was diagnosed in 1997 with a rare lung disease Lymphangioleiomyomatosis (LAM). Bronwyn works in New Zealand and with global LAM research groups. As the Director and Founder of the New Zealand LAM Charitable Trust since 1998, she raises funds for scientific investigation into the causes of LAM and works closely with Australian and US LAM research teams. She supports NZ patients with LAM and works as an educator to raise awareness of LAM in the GP community throughout New Zealand.
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.
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.
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.
Stephen has been the Curekids Professor of Paediatric Genetics at Otago University, since 2003. He studied Medicine and specialised in Paediatrics 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.
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.
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.
We are also very grateful to our previous trustees.