Present: Jean Campbell, Mark Campbell, Gillian Deane, Roderick Deane, Diane Goddard, Doug Lang, Mrs Lang, Jan Low, Stephen Low, Mike McRoberts, Paula McRoberts, Christine Morrison, Val Morrison, Megan Pakes, Rob Pakes.

Overview:

Whereas the Rett Syndrome Association had existed under the umbrella of IHC for many years, the parents wished to develop an independent self governed group with its own charitable status for fundraising, advancing educational and research ideas, and supporting girls with Retts syndrome and their families. At present we are using the New Zealand Organization for Rare Diseases to help support our activities whilst we are organizing our own Trust Deed and charitable status to become an independent charitable trust.

The following items were resolved by the group to allow the next stage of the development of the Trust Deed and the philosophy and principles of the organization.

The Name:

The parents decided Rett New Zealand sounded crisp and determined. This was agreed to be the name of the organization going forward. This organization would supercede the current informal New Zealand Rett Syndrome Association, of which Gillian Deane has for many years been National Co-ordinator.

The Trust Deed:

The group agreed to ask Roderick Deane to develop and formalize the draft of the Trust deed and send copies to members of the group for comment before finalizing the deed. It was suggested that the number of trustees should be small for administrative convenience and should comprise initially the President, Vice President, Treasurer and say one other officer of Rett NZ. Roderick would suggest also an initial set of governance arrangements for consideration by the committee.

Bank Account

It was agreed that once the Trust Deed has been established a bank account would be opened for the new Trust and that the funds currently held on behalf of Rett NZ in a separate account by NZORD would be transferred to this new account. A set of procedures for administering this account would be drafted by Roderick Deane for consideration and possible adoption by the Committee when the Trust Deed is approved.

Committee and Office Holders:

A committee was formed to enable the development of the first stage of the new charity and to meet the needs and responsibilities of the fundraising drive.

In line with the talents of the people available within the group and consistent with the purpose of the organization, the initial Rett New Zealand officers and other committee Chairs and members were agreed as follows:

President: Rob Pakes of Tauranga

Vice President: Mark Campbell of Auckland

Secretary: To be decided, John Cartwright, of Te Puke, who has a great track record in caring charities will be approached by Rob.

Treasurer: Doug Lang of Wellington, who has had a long career in Banking and Insurance

Fundraising Committee Chair: Megan Pakes

Research Promotion: Stephen and Vicky Low of Ngatea.

Pre-school and Primary Education: Chair: Jean Campbell of Auckland. This responsibility will include Music Education.

Vocational Education Chair: Christine Morrison of Gisborne.

Conference Committee: Rob and Stephen to work on a date for the conference, then the programme and accommodation arrangements for discussion by the Committee.

Conference in 2007:

It was agreed it would be desirable to hold a National Rett NZ Conference in 2007.

Questions to be discussed by the Committee include the possibility of a separate Rett NZ Conference with leading potential speakers to include Kathy Hunter, President of the International Retts Syndrome Association ( who has already agreed to come out next year for such a purpose ) and Dr Mike Sullivan, of the Children’s Cancer Research Group at the Christchurch School of Medicine ( University of Otago) based in Christchurch, to explain genetic testing and research.

The Conference would be designed to provide a mixture of comfort, good advice and hope by updating participants on the latest medical and support research, educational facilities and techniques, and family support arrangements. It would also provide the opportunity for families and other participants to meet each other and to learn from each other’s experiences.

Haemish Crawford, Mike Mc Robert’s orthopaedic specialist has also offered to speak.

Regional Co-ordinators:

One parent or grandparent in each region would be asked to be a Regional Co-ordinator to collect names of all the interested Rett families in their regions, to maintain a record of these families, and to help facilitate the collection and distribution of information for the area. This would include information both for families and also for their medical advisers, GP’s, therapists, teachers and supporters. The committee would work on lists of parents who may wish to help with these roles in order to make the necessary appointments and to define clearly their roles.

Website and Forum:

It was agreed that Gillian Deane, who has been National Co-ordinator of the former NZ Retts Syndrome Association, would continue to manage the web site development programme and help oversee and co-ordinate the day to day management of the site. This would include the Forum which exists on the site to promote discussion among those interested in Retts Syndrome and support of the girls and their families. Gillian indicated that she would also be happy to be available to assist with other projects particularly where national co-ordination was required.

Meetings:

It was agreed that future meetings could be held by internet, telephone or as normal meetings. It was suggested that an AGM could be associated with a conference or regional meeting.

Appreciation:

The Group thanked Mike McRoberts and Paula Penfold for their sensitive and intelligent documentary and Mike’s wonderful fundraising page which has reached nearly $4000. Mike was also thanked for his wonderful speech at the dinner.

Patron:

Mike McRoberts was asked if he would be willing to be Patron of the new organization and he graciously accepted the role.

Advice:

The Group would seek advice from John Forman, Executive Director of NZORD, and Jenny Noble, who had offered to help as they had set up a NZ Lysosomal Group.

Sponsors:

Everyone wished to thank all of the sponsors and people who had made such kind donations to the cause. The sponsors have been fantastic and it is important that we write to them to express our warmest appreciation.

Conclusion:

The meeting concluded with the Group thanking Megan and Rob very warmly indeed for their stunning success in fundraising for the conference and for future support of research programmes. Everyone agreed they had done a wonderful job for us all.

Rotorua

29 October 2006