Annual General Meeting 2009

The Hilton Hotel, Northampton, Saturday 18th April 2009

Minutes of previous AGM

The Minutes of the AGM on Saturday 26th April 2008, previously circulated, were agreed and signed.

Election of officers

The current officers, Phil Humphreys (Chairman), Terry Crotty (Vice Chairman), Julie Sales (Secretary), Kevin Sales (Treasurer), Chris Humphreys (Conference and National Co-ordinator), Anne Crotty (Fundraising Co-ordinator) and Tonia Hymers (Newsletter Editor) were all eligible for re-election and were elected unopposed.

Election of Committee

The current committee members, Tina Hickey and Julian Thomas, have a further year to serve on the committee. Craig Barrass and Jackie Farrington retire this year, having served over and above their two years, and we thank them for their contribution over this time. Nominations were received for Jackie Farrington, Steve Burge and Allan Clarke. The votes were counted by Robbie Hymers and verified by Terry Begley and Steve and Allan were elected for a period of two years.

Chairman’s Report

Phil Humphreys, Chairman, gave his report: “What a difference a year can make. As I stood here last year, I wondered if we’d be able to afford a weekend conference in 2009, such was the state of our bank balance. As you will see from the accounts, January to December 2008, there has been a dramatic improvement in our finances. I’ll leave that to our treasurer. Craig Barrass and Jackie Farrington retired from the committee. The committee extend their thanks to Craig and Jackie for their invaluable contribution and wish them well in their future endeavours. I would at this time like to pass on condolences to Craig, Beverley and family, on their recent bereavement.

With regards to fundraising, a huge thank you to everyone who has raised funds, donated, and helped in any way to accumulate over £25,000 in 2008. What an amazing year you’ve had. Anne Crotty has been more successful in her application for grants in 2008 and the amounts received were as follows: Bellinger Donnay Charitable Trust £1,000, Goldsmiths’ Company Charity £2,000. These grants, together with that received from the Coventry Building Society Charitable Foundation, enabled us to have an excellent annual residential weekend and day conference that many of us enjoyed last year. Our heartfelt thanks go to these trusts. The Jeans for Genes Campaign 2008 granted us £4,900 for this year’s weekend, and we are pleased to welcome Lisa Pettifer, Communications Manager, and her colleague, Danny Parry, Communications and Events Executive, here today. Unfortunately, two of our projects in 2008/2009 – an awareness day at the House of Lords, to be hosted by Baroness Helena Kennedy, and a charity ball in Cardiff, hosted by Ryan Jones, and attended by the Welsh squad – had to be cancelled through lack of support, but watch this space for another event to be organised in Cardiff in the Autumn of 2009.

On a more successful note, thank you to all those who took part in our other two new ventures, namely the sports raffle and the national coffee morning. This will give us something to build on in the coming years. I would like to thank Ryan Jones not only for his support during the year but for donating much sought after signed memorabilia. Ryan is unable to be with us today, due to match commitments. This exceptional year of fundraising has boosted our funds and taken us out of a somewhat desperate situation, but we cannot rest on our laurels. The Society still needs to raise at least thirty thousand pounds a year, so we constantly need your help. I thank all those who have taken part in the fundraising; without every single one of you, the society could not continue the valuable work that it does.

Thanks to Julie Sales and Lance French who manage our website at no cost to the Society. Lance and Julie are currently working on a redesigned web page, which, once finished, should be more interesting than our current one. At the end of 2008, we had 11,848 unique visits, 19,407 return visits, and a total of 160,255 hits. The USA is still the most popular visitor, followed by the UK. As well as managing the web and the merchandise, (we have t-shirts, polo shirts, rugby shirts, fleeces, hoodies, christmas cards, teddy bears, sports bags, keyrings and so on), Julie also manages the childcare at the conference, and, for this, we thank her. Our database has a steady number of families and professionals. It now stands at 300 families and 181 professionals. We are finalising the update of the LMBBS database, checking the information we hold is accurate and in line with the data protection act. Thank you, too, to Chris Humphries for her work as national coordinator; Chris is the first point of contact for many of our newly diagnosed families, professionals, and many other organisations, by telephone and email.

Conference numbers are slightly down on last year, due to the mix up of dates with the Hilton – their fault, not ours - nevertheless, we have 173 attending this weekend, including carers and children. You’ll have recently received your bumper spring newsletter, produced by our newsletter editor Tonia Hymers. I’m sure you will agree that, along with the conference report, they made excellent reading. There is no office. Tonia produces the report from home, juggling family commitments, as we all do on the committee, along with an Open University Honours degree. Copies of the reports are available in audio, CD, print and are available to download on the website. Please contact Tonia on toniahymers@btinternet.com for any other requests. If you have received this year’s newsletter, put pen to paper and send Tonia any photographs, snippets of news, fundraising, personal perspectives, or anything you could think would interest others within the Society and you too could have your name in print.

My thanks to Allan Clark for raising awareness in Scotland; Allan has attended the Scottish Parliament Rare Disease Day in March, as well as attending the first ‘Sight Village’ in Glasgow to promote awareness of the syndrome. Allan has been involved, and still is, in fundraising for the Society.

Thank you, too, to Robbie and Tonia Hymers, Tina Hickey, Jackie Farrington and Craig Barrass, who, on a rota basis, manned the LMBBS stand at Sight Village in Birmingham in 2008. It is an important date in the Society’s calendar, enabling us to reach out to many professional organisations and those with a visual impairment. Sight Village, organised by Queen Alexandra College, Birmingham, is a premier European event, showcasing technology, support and services for people who are blind or visually impaired. Exhibitors from throughout the world take part and many thousands of visitors are welcomed over the three-day period. Admission is free. For further information, log onto www.qac.ac.uk.

Our aims and objectives for the coming year are as follows:

• To continue to actively seek sponsors to fund future conferences
• To support Professor Beales in setting up designated LMBBS clinics in Birmingham and London in 2011
• To finalise the update of the LMBBS database, checking the information we hold is accurate and in line with the Data Protection Act
• To build on the success of the LMBBS National Coffee Morning, making it a significant annual event aimed at raising awareness and funds
• To continue with fundraising and support our members in their fundraising activities
• To continue to produce a newsletter and conference report annually

We will strive to achieve our aims outlined above, and we will always work together to ensure the Society continues to go from strength to strength. I will leave our treasurer, Kevin Sales, to give his report on this year’s accounts. My thanks to him for his continued tight rein on the spending of the Society. Finally, I would like to thank Professor Beales and all members of the committee for the continued unstinting work and dedication to the Society, and all our speakers for giving up their valuable time to attend our conference. Thank you very much.”

Treasurer’s Report

Kevin Sales, Treasurer, gave his report: “The accounts have been balanced and audited for 2008 by Michael Bannister of Thompson and Company, who has again agreed to stand next year. Michael does the accounts free of charge, so we show our appreciation with a few bottles of wine. The two Barclays accounts that we’ve got are running smoothly with the ‘Friends’ account increasing every month. During the year, we were successful in obtaining three grants totalling £7,900. Obviously, the grant for Jeans for Genes for £4,900 is showing in the accounts as a restricted fund, as requested by them, and this is to be used for certain events throughout the year, including the conference. As you can visibly see, donations and fundraising throughout 2008 raised over £25,000 – a record year for the society compared with 2007, more than double. This was quite a remarkable achievement, taking into account the current economic climate, so a big thank you goes out to all those people who managed to raise money for the Society in 2008.

I would also like to say a big thank you to Jonny and Sharon Fegan for their support over the year and the people of Newry for the magnificent amount of twelve thousand pounds. I’m pleased to say we finished the financial year with just over £10,000 in 2008, which is a good start for the year to come. However, without your continued support and tireless fundraising efforts we would struggle to continue as a Society, so please keep up the good work. Thank you.”

Appointment of Auditor

The Chairman confirmed that Michael Thompson has kindly agreed to continue as Auditor for another year and he was re-appointed.

Any Other Business

The Chairman had received no written notification of any other business but invited those present to raise any questions; in the absence of any such questions, the meeting was closed.

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