Dugald, originally from Scotland, arrived in New Zealand in 1982. He has a background in heavy engineering manufacturing and is pleased to be able to say that he retired about 3 years ago. However, he is as busy now as he has ever been! He and his wife, Christine have two daughters, the elder one, Kim, lives and works in London and Mandy, who has Rett, stays at home to make sure Mum and Dad behave themselves. Beyond family activities, Dugald plays (very poor) golf and enjoys boating.
Mark lives in Auckland with his wife Jean, and their 3 children Emma, Harriet and Nicholas. Harriet is a young adult with Rett Syndrome who was born in Wellington, grew up in Auckland and has lived in Singapore with Mum and Dad. The family returned to Auckland in 2016.
Mark has worked in the private and public sector and has experience in a range of governance roles and trustee organisations mainly in the disability sector. Mark has had a long- term commitment to Rett girls, young adults and their families and works closely with fellow trustees to raise awareness and support the Rett community in NZ.
Lady Gillian Deane's passions have revolved around advocating for those with disabilities and rare disorders because her daughter Kristen had Rett Syndrome. She has worked extensively for the arts, searched for her whakapapa, and created a large garden of New Zealand plants. She has a BA degree, a Teachers Certificate, and passed the Royal Horticultural Society exams. Her Maori Iwi is Ngati Whanaunga from the Coromandel.
Gillian is Patron of NZ's largest voluntary welfare organization, IHC New Zealand; Chair of the Deane Endowment Trust; a former Trustee of the New Zealand Princess Diana Trust, the NZ International Festival of the Arts, and the Arts Foundation of NZ; and a former Patron of Mary Potter Hospice. She was President of the Friends of the Festival. Gillian received the NZ Patronage Award from the Arts Foundation of NZ, a Civic Award from Wellington City, and was presented by the Governor General with the Inaugural Lifetime Advocacy Award from the NZ Organization for Rare Disorders.
Wendy is the parent of three children. Her eldest is a young adult with a variant of Retts.
Wendy has special expertise with arranging care for people with high and complex needs and is currently learning to negotiate the new system under Mana Whaikaha, the disability support services transformation being rolled out in the Mid-Central health region.
Wendy is a Registered Nurse, board member of the Complex Care Group Trust, a member of the Care Matters Advisory group and a Parent to Parent support parent. She has extensive and ongoing experience in the disability sector as a family member accessing services for daughter Sarah.