Rob Pakes – president

Rob currently resides in Pahoia, Tauranga and is a Regional Business Development Manager for Toll NZ. Rob has spent the last 18 years working in the Transport Industry for both Owens Group and Toll in varying roles.

Rob's first child, Alysha was diagnosed with Rett after some three years of testing and it was through this heart breaking process that Rob and his wife Megan sought to find a way to help families in the future deal with such news. After talking with Rod and Gillian Deane, Rob and Megan we were fortunate enough to receive support from the Deane Trust to travel to San Francisco for a Rett conference. They returned home with hope, strength and a desire to replicate in NZ what was happening in America. They worked with Rod, Gillian and other parents to create the Rett NZ Trust. Rob's long term goal is to one day have a Rett specific clinic in NZ that families can attend every year.

Megan recently gave birth to Luca, their second child, after three years of IVF.

Rob's interests are motorsport, karting, following his nephew around the country with his motorcross, water skiing and surfing. His idols are Ayrton Senna, Michael Jordan and his wife!

Mark Campbell – vice president

Mark lives in Auckland with his wife Jean, and their 3 children, Emma, Harriet and Nicholas. Mark has worked for a number of multinational organisations in the automotive, oil and beverage industries, both in New Zealand, Australia and the United Kingdom.

He attended Massey University attaining a business degree before travelling and working extensively overseas. He returned to Wellington for 5 years and then Auckland for the last 10 years where he now works in a senior role with DB Breweries limited. Mark belongs to a number of industry associations and has experience both as a trustee of superannuation schemes as well as a  private trustee for individual family trusts.

Harriet, who is 10 years old, is Mark and Jeans middle child. She was born in Wellington and was diagnosed with Rett Syndrome at the age of 3. Mark and Jean were not able to get an early diagnosis of Harriet's condition but once they did, took a significant interest in learning about Rett and with the experience and guidance of long serving Rett Syndrome experts, Gillian and Roderick Deane, became active in the Rett New Zealand Charitable Trust.

Mark is proud to be a Rett Trustee and working to improve the welfare for Rett girls and their families.

Gillian Deane

Gillian Deane is Patron of IHC NZ, National Coordinator of Rett New Zealand, a Trustee of the NZ Organization for Rare Diseases, and Chair of the Deane Endowment Trust.

Previous positions included Trustee of the Arts Foundation of NZ, the International Arts Festival, the Diana Princess of Wales Trust, and Patron of the Mary Potter Hospice.

She has a particular interest in the arts, music and opera, science, early New Zealand and Maori history, and is a devoted conservationist, having regenerated a large area of wetlands which has now been declared a NZ National Heritage site.

She created the Deane Endowment Trust which assists a wide range of arts and cultural organizations; a range of talented young people in the arts, music, opera, and science; some medical science research projects; and people with disabilities. The Deane Trust was awarded the Arts Foundation Patronage Award in 2008.

Doug Laing

Doug Laing our Treasurer is the devoted grandfather of Jacinta who has Rett syndrome. Doug and Bev have been fortunate to live within 5 minutes of Jacinta and her family from the day she was born. She also lived with them for 12 months and they have learnt so much about Rett by being involved in her education, swimming and horse riding as well as day to day caring. Doug works at ING and at the weekend he tends to their very large beautiful garden.

Dugald MacBrayne

Dugald, originally from Scotland, arrived in New Zealand in 1982. He has a background in heavy engineering manufacturing and is presently General Manager of an Auckland based company which imports and makes high pressure water pumps, pumping systems and industrial vacuum cleaners. 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. Outside of work and family Dugald plays (very poor) golf and enjoys boating.