Minutes of the Annual General Meeting held on
Saturday 15 May 2004 at 10 am in
The Robin Brooke Centre, St Bartholomew’s Hospital, London

PRESENT: Clare Tritton, QC (Chairman); Ray Dias (Treasurer) Rae McNairney; Kathryn Hennesy; Jose Drabwell; Guy Matthews; Andrew Moore; Nick Hanbury-Williams; Dr Andrew Cant and some 80 Association members.

In attendance: David Watters (Chief Executive); Vicky Lugris (Communications Officer); David Waterston (Acting Administrator); Jenny Jackson (Benefits Advisor); Kate Ward (Admin Assistant); Kieran Bright (Outreach, Volunteers and Events Officer).

The Chairman opened the meeting by introducing Trustees and thanking the pharmaceutical industry for their support that made the Annual Conference possible.

1. Apologies for absence had been received from 21 members of the Association.

2. Minutes: The Minutes of the AGM held on Saturday 17 May 2003 had been circulated to the membership and no amendments had been received. Their approval was proposed by Mrs Drabwell, seconded by Mr Satchell, and agreed with one abstention.

3. Report from the Trustees
The Chairman said that those attending had received copies of the Report and Accounts in advance of the meeting. She went on to express her gratitude and thanks to those who had served as Trustees during the year and those present were introduced to the membership. The Chairman expressed the special thanks of the PiA to Dr Cant for his help and guidance throughout the year as MAP Chair. Thanks were also expressed to the PiA volunteers who help in so many ways – the After Hours Helpline; the Keswick Holiday; the canal boat holidays; in the office or as contact people for particular conditions. Special thanks were extended to Mr Gray and Mrs Drew who had served the Association during the year but who had resigned during the course of the year. Mrs Hennesy was not offering herself for re-election and appreciation of her services was shown by sustained applause from the audience.
The Chairman spoke of the need for good governance in charities and the need to attract new skills and experience to the Board of Trustees. This was especially so in view of the new standards being imposed by the Charity Commission in terms of legal responsibilities, human resource requirements and financial reporting – all necessary for the delivery of a first class product.
Adoption of the report was proposed by Mr Moore, seconded by Mr Belfield, and agreed unanimously.

4. The Financial Report and Statement of Accounts
Mr Dias presented the accounts of the Association for the year to 31 December 2003. He highlighted the financial performance during the year and drew attention to the deficit at the year end.
Mr Jackson asked about the 60:40 split in the income from Jeans for Genes and it was explained that this was part of the legal agreement binding all partner charities in the Campaign.
Approval of the Financial Report and Statement of Accounts was proposed by Mr Jackson, seconded by Mrs Hennesy and agreed unanimously.

5. Appointment of Auditors for the forthcoming year
Mr Dias reported that the present auditors were Messrs Pinkney Keith Gibbs and that he was happy to support their re-appointment for the current year. This was formally proposed by Mr Hanbury-Williams, seconded by Mrs Drabwell, and agreed unanimously.
The Chairman thanked Mr Dias for his work throughout the year, highlighting the fact that he had deputised at two Trustee Meetings and taken the lead on Incorporation planning in addition to his onerous duties as Treasurer.

6. A Proposal from the Trustees
The Chairman explained that everyone had received the suggestion from the Trustees that the PiA should become a Company Limited by Guarantee. While this would be formally proposed at an EGM later in the year, the Trustees wanted to seek the approval in principle of those present at this AGM. There were no questions and so approval was deemed to have been given.

7. The Election of Trustees
There were no Trustees due to stand down by rotation at this AGM but two candidates were presented to fill vacancies. Andrew Moore is a patient with XLA and Deputy Director of Finance for a large NHS Trust and Nick Hanbury Williams brings considerable financial skills from the City. Both had served as co-opted Trustees for a number of months and their election was proposed by the Chairman and seconded by Mr Dias. Put to the vote both candidates were elected unanimously. The Chairman accordingly declared both candidates elected to serve for a period of three years.

8. Appointment of Chairman, Treasurer and Secretary
The Chairman explained that under our Constitution the officers of the PiA stand down each year. The Chairman announced that as there was only one candidate for each post of Chairman and Treasurer they were both elected and were declared to be so elected.

8. Any other business
No other business had been notified in advance and no one raised any points when given the opportunity to do so.
Mr Jackson moved a vote of thanks to the Trustees, the staff and the volunteers for all the work done in support of people with primary immunodeficiencies throughout the year. This was endorsed by spontaneous applause from those present.
The AGM concluded at 10.45 am.

Key Note Address
After conclusion of the formal AGM the Chairman announced that the Chief Executive, David Watters, would be retiring at the end of January, in advance of the next AGM. She outlined the work he has done for the PiA and how its profile had been raised during his time at the Association. The Trustees felt it right that he should give this years Keynote address outlining what the PiA could do for its members. In his address Mr Watters outlined the wider aspects of the work of the PiA based around the PiA Mission Statement. He acknowledged his indebtedness to the staff team who he introduced to the meeting. The need for members to raise funds was also emphasised. At the end of the address those present showed their appreciation with prolonged applause.

At 11.30 the meeting broke for workshop sessions, an opportunity to visit the pharmaceutical company stands and simply to meet old friends and make new ones. Those continued after lunch and at 2.30 there was a plenary session with a panel of experts to answer any questions that had arisen.

The meeting then proceeded to the Awards ceremony.

The Chairman reported that there were two recipients of the Gordon Virgo Award this year. The fund was established in memory of Gordon Virgo by his relatives following his untimely death due to a late diagnosis. The recipients were Sally-Beth Lawless and James Baker. Both have a primary immunodeficiency and Sally-Beth is an accomplished athlete, dancer and performer while James excels in landscape painting. They each received a cheque for £50 to enthusiastic applause from the audience.

Mrs Tritton then moved on to the presentation of the PiA Awards for 2003. Again this year there were two such Awards. The first went to Andy Johnston, a member of the PiA who ran the 2004 London Marathon and donated his sponsorship monies – over £1,000 – to the PiA. His award was presented by the Chairman to the sustained applause of the meeting. The second Award went to Sister Jane Gaspar, recently retired from Great Ormond Street Hospital. The Chairman emphasised the great contribution she had made to the lives of so many children and young people through her involvement in home therapy and then Bone Marrow Transplantation and latterly gene therapy. Again, those present showed their appreciation with sustained applause.

Tickets for a draw had been sold during the day and Andy Johnston won the champagne and Mr Jackson a box of chocolates.

Mrs Tritton thanked everyone for attending and wished them all a safe homeward journey.