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Board of Trustees Meeting September 2012

Trustees Meeting 29th September 2012

Members summary:

Trustee meetings

The Board decided in future to publish a summary of the outcomes of Board Meetings on the website, to make information more available to members. It was decided to hold one of our Board meetings as an AGM, probably in conjunction with the May Family Weekend. This would allow members, volunteers and professionals to participate and share ideas directly with the Board. SOFT UK


The Board agreed to undertake a review of the newsletter and seek feedback from members about it. Many ideas were shared about developing the Newsletter at the June Development Day, including increasing the ‘news’ articles about the work SOFT is involved with, letting members know of the work done by our volunteers as well as ensuring we are getting value for money in the production costs of the newsletter itself. It was agreed for a review to take place after the current Autumn edition.

There are a few important articles to be added in to this Autumn edition, which has caused a bit of a delay in publication. These will be finalised and sent to the printer as soon as possible.


The NHS has asked SOFT UK to be involved in preparing the information and photographs it will publish on its own page on Trisomy 18. Trisomy 13 will follow soon. It is important that we participate in this, to make sure the information is as accurate as possible. The NHS page will link directly to our website once published.


There was a large fundraiser in September, which raised over £20,000 for SOFT UK. The Board are extremely grateful for these efforts and contact will be made with the fundraising team involved to express our thanks.

It was agreed to set budgets for the next meeting for all our main activities; Family Days, newsletter, telephone support, etc.

Development Day Review

The Board approved the notes from the highly successful June Development Day, where our Trustees and volunteers came together to discuss the future plan for SOFT UK. It was agreed that the priorities were identified as follows: to improve our liaison with professionals, to increase awareness and generate referrals to conduct a review with members, volunteers and other stakeholders about the services we currently provide to address the issue of SOFT UK’s position on Google search results.  

These priorities, together with the other plans developed during the event will form the basis of a work plan for SOFT going forward.

 Policies and Procedures

The list of employment policies was provided and approved.

Gift Aid

SOFT UK is being registered to claim Gift Aid on all donations. It may be possible to backdate some claims.

Research and Development

Professor Joan Morris is undertaking some trisomy-related research. Dani Robbins is going to be involved with the project. More information will follow on this at a later date.


Laura Petrie is going to liaise with ARC to improve relations, with a view to wider coverage of SOFT UK within their network and to encourage their support volunteers to direct people to us where appropriate.

Future Meetings

A timetable will be drawn up for the whole of 2013, to feature Family events, newsletter publication dates and Board Meetings. This will be available on the website soon.  

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