The RettNZ Charitable Trust was created by Roderick Sheldon Deane as Settlor in October 2006.

Board of Trustees

The initial Trustees were Robert John Pakes, at the time President of RettNZ, of Tauranga; Mark Graeme Campbell, at the time Vice President of RettNZ of Auckland; Douglas Harrow Laing, at the time Treasurer of RettNZ, of Wellington; and Gillian Deane, at the time National Co-ordinator of RettNZ, of Wellington.

Historical Background

The Trust’s predecessor was the Rett Syndrome Association which had been formed by Gillian Deane in 1986 who acted as National Co-ordinator throughout the period until the formation of the Charitable Trust. The activities of the Rett Syndrome Association had encompassed similar objectives to those of the RettNZ Trust. It was funded by Gillian and Roderick Deane initially and later by the Deane Endowment Trust. It operated under the auspices of IHC in a manner which was supportive to the Association.

Philosophy of the Trust

The Trust is devoted to the care and support of girls and women with Rett Syndrome and their families. The Trust believes that people with Rett Syndrome have the right to live and enjoy normal lives as part of the community. They have the right to develop their talents as much as possible and to participate fully in the community and community activities. The Trust acknowledges that in order to realise this aspiration, girls and women with Rett Syndrome and their families and friends need help and support with respect to advocacy, day to day services, education, and medical advice and treatment.

Description of Rett Syndrome

Rett Syndrome is a devastating, degenerative, neurodevelopmental disorder that almost exclusively affects girls and is the second most common cause of severe intellectually disability in females after Down Syndrome. Its many manifestations include epilepsy, scoliosis, nutritional difficulties, and disorders of mood and development. Girls with Rett Syndrome initially develop normally but then lose the ability to talk or walk or care for themselves. They become unable to feed themselves.

However, they frequently have strong eye contact, a seeming awareness of what is going on around them, and often a considerable sense of humour. As young children they are frequently very attractive and it is widespread practice for them to be brought up within the home and family environment. The parents of girls with Rett Syndrome invariably have great determination to bring them up within the home environment and to provide them with as many opportunities as possible, all of which is frequently underpinned by a great sense of love, determination and resilience.

It is these characteristics which the Trust aims to encourage, promote and support.

Objectives of the Trust

The Trust’s principal objectives as set out in the Trust Deed are:

1. Encouraging, promoting, advocating and supporting the interests of people with Rett Syndrome and their immediate families or caregivers;
2. Providing assistance to people with Rett Syndrome and their immediate families in order to help them gain expert medical, therapeutic, educational or other professional guidance;
3. Enhance their education and knowledge with respect to research on the causes of and the treatment and management of Rett Syndrome;
4. Facilitating the interaction and networking between families with members who have Rett Syndrome, including promoting and organising conferences and meetings of such families; and also of such families with medical, research and professional experts on Rett Syndrome to discuss Rett Syndrome and related issues;
5. Promoting education and research and the dissemination of knowledge and information and understanding in New Zealand on Rett Syndrome;
6. To raise funds to advance these objectives;
7. There are further objectives set out in the Trust Deed with respect to potential co-operation with others; publication of newsletters; establishment of criteria for affiliation with the Trust; determining the types of services the Trust will provide; and seeking advice of various kinds; all of which are designed to promote the principal objectives of the Trust.

Governance

The Trust is governed by the Board of Trustees who meet and email regularly to discuss and agree on the use of the Trust funds; to discuss the financial position of the Trust and the management of its funds; to facilitate additional fundraising activities to meet the objectives of the Trust; and to discuss and prioritise the Trust’s day to day activities, including assessing future opportunities to meet the Trust’s objectives.

The Trust’s funds are presently held in a bank account at the National Bank of NZ.

The Trust Deed was drafted by Paterson Hopkins, lawyers based in Auckland.

The finances of the Trust are handled on a day to day basis by the Trust Treasurer, Doug Laing, who also prepares the Annual Accounts.

The Honorary Auditors are KPMG of Wellington.

Full details with respect of the Trust and its activities are on the Trust’s website www.rettsyndrome.org.nz. The Trust’s postal address is PO Box 28049, Wellington.

Email enquires should be directed to admin@rettsyndrome.org.nz or rettsyndrome@xtra.co.nz.These are handled by Gillian Deane as National Coordinator.

Operations

The following matters are amongst those issues which the Trust plans to address.

The basic aim is to facilitate more support, help, guidance and information for families with girls with Rett Syndrome.

The Trust plans to do this by engaging where necessary and affordable, part time contractual staff to work with the present set of volunteers to promote more meetings and interaction between families and teachers, therapists, medical experts, and people skilled in the challenges of Rett Syndrome to provide underlying support to families and the girls with Rett Syndrome.

Specific activities which will give this substance will include:

1. organizing further workshops and annual national conferences; arranging leading specialists and expert speakers and counsellors to participate (this has been done several times in the past and the trustees are becoming more expert at arranging these meetings more funding is needed to help additional families to attend and to pay the travel costs of experts to come to speak and participate (all of whom to date have volunteered their time and do not take any fees);
2. improving the web site to provide more information for parents and in particular to promote dialogue between parents on the web site on a secure basis;
3. keeping the now substantial database updated and to further enhance it;
4. helping respond to the many queries and calls for help and support from families under stress and to help guide them to expert help;
5. providing advice and guidance on educational and therapeutic opportunities;
6. providing guidance on opportunities to obtain additional funding help for families who need respite care;
7. helping parents locate appropriate expert diagnostic assistance and medical care
8. advocating for families with girls with Rett Syndrome who need more support.

Community benefits from the Trust’s activities

Rett Syndrome affects approximately 1 in every 10,000 live births for girls. It is more prevalent than PKU for which all children are now tested at birth. It is the second most important cause of intellectual disability yet there is no known cure and many people are still unaware of it. It is hugely demanding for families as girls with Retts need 24 hour 7 day a week care. They almost always remain at home because they can be so appealing and attractive. But they place huge demands on the families and the community to care for them. The community will benefit from the Trust’s activities by us being able to provide more targeted help and support to these families and the girls with Retts. Remaining in the community provides them with more love and warmth and fun in their lives but this requires huge effort and dedication. Additional help is needed to underpin this which is one of the main drivers for the Trust.

This Charter was adopted by the Board of Trustees of the RettNZ Charitable Trust at its meeting in Wellington on 9 February 2008.