The current members of the LDNZ board are as follows:
Profile: John is a parent of adult twins who both have a rare Lysosomal disorder, Alpha-Mannosidosis. He was one of the founders of LDNZ in 1999 and has kept up continuous involvement on the board since that time. He also set up and ran the NZ Organisation for Rare Disorders from 2000 to 2015, and has contributed to the development of several local and international rare disease and related advocacy organisations.
Profile: Paul is the parent of James who has MPS II (Hunter Syndrome). James received a transplant for his condition when he was 5 years old with his sister Maggie providing the perfect match in donor cells. James was also the first transplant patient to receive enzyme replacement therapy for several months prior to the transplant, following a high profile battle with Pharmac through current affairs TV. Paul has supported LDNZ and NZORD in a number of Rare Disease Day and medicines funding workshops we have held to work towards improved access to medicines for our families in need of treatment.
Paul’s background is in venue catering. The family moved from Christchurch to Auckland earlier 2014 so that Paul could take on the Venue Catering Managers role at Eden Park Stadium.
Technical Officer and PhD candidate
Profile: Since 2000 Nadia has been working as a research technician in the Batten disease research group at Lincoln University, looking at the molecular genetics and neuropathology of ovine forms of Batten disease.
In March 2013, Nadia began a full-time PhD study, concentrating on gene therapies in the sheep and their potential translatability to humans. Alongside this, she is developing potential bio markers to detect any amelioration in disease progression from such therapies.
Attendance at a number of national and international Lysosomal storage diseases conferences has given Nadia the opportunity to meet an liaise with fellow researchers, clinicians, parents and patients. As a mother to youngsters herself, she has a real affinity with and respect for families with lysosomal diseases.
From July 2019 the board will maintain LDNZ as a volunteer-run organisation. This follows 20 years in which former trustee Dave Palmer, and especially former Field Officer/Administrator Jenny Noble, provided an enormous amount of time and energy in pursuit of LDNZ’s goals. We thank them both for their contributions
Former trustees and staff
Profile: Jenny worked hard to improve knowledge about Mucolipidosis Type III which affects 2 of her 3 children (now adults), since the late 1980s, and made important connections with researchers and medical experts overseas. When LDNZ was being formed in 1999 she readily joined and worked tirelessly for the next 20 years as LDNZ’s Field Officer and Administrator. She has stepped down from June 2019 to pursue family and business interests, but maintains her international connections with related diseases.
Prof. David Palmer
Principal Research Officer
Animal and Food Sciences Division, Lincoln University, Canterbury
Profile: David has researched Lysosomal diseases in animals since the 1980s and became a trustee when LDNZ was formed in 1999. His 20 year commitment to our organisation is greatly appreciated, especially for his insights into disease knowledge and advances in therapies.
Profile: Dianne is the Director of the Newborn Metabolic screening programme and worked closely with LDNZ as a trustee for our first 15 years. Her experience of the health system and scientific knowledge proved a great asset to us.