I am pleased to welcome you to another edition of Reaching Out. It has been a long time coming and I apologise for that – but there is a good reason why that publication delay took place. As you know, we hosted the 2009 CdLS World Federation Conference in Brighton. It was a great honour to be selected to host the event way back in 2005 and the committee worked hard to find a venue that could accommodate the estimated 500-700 delegates that could attend from all over the world.

There were limited choices for hotels that could cater for those kind of numbers and eventually we selected the Hilton Metropole Hotel at Brighton. We knew it would be costly but also, from our experience at running a previous international conference for the US Foundation back in 1997 at Stratford and a European conference at Carden Park, Cheshire in 2000, we knew that we could attract corporate sponsorship and additional fundraising. We had also allocated some reserves to subsidise costs for families attending and to enable our scientific and clinical advisory team organise a conference that would educate UK care and medical professionals about CdLS and other similar syndromes with challenging behaviour.

We had budgeted to receive around £100,000 in corporate sponsorship and a further £45,000 from fund raising and reserves for conference support. We signed the contracts in 2007 full of promise and enthusiasm for the event and enjoyed the Canadian conference where many of the delegates there pledged to make the trip to the UK in 2009.

Later that year the first signs of the global recession began to show. Throughout 2008, the committee worked tirelessly to ensure we would have a great event but going into 2009 there was a barely a single family registered. And worse, companies that had suggested donations would be coming, were calling us to say that unfortunately the funds had dried up.

We spoke to the hotel to ask if we could reduce our estimated minimum figure from 500 delegates or even postpone the conference for a further year. They refused and advised us that we would have to pay the full contracted amount including all meals. We had no option but to continue. There was great support from some countries – particularly the French, Italian, Dutch and Danish families and especially from our old friends from
Australia.

In the office Jacquie Griffin worked an immense number of hours each week along with support from Adam Rich, brother of Eleanor, who came on a number of occasions to help with bookings spread sheets and chasing foreign currency payments. There were flights for doctors to organise and equipment for translations; buses needed for taking out siblings and menus to be selected. Again the committee was fantastic in making things happen.

Meanwhile we tried to squeeze every penny we could from contacts and sponsors. We received a surprise one-off grant of £20,000 from The Dyna
and Fala Weinstock Charitable Trust to help us with the medical conference, and Rotary clubs from Grays Thurrock, Mardyke Valley and Brentwood in Essex all paid to sponsor doctors to attend and present to the professionals event and the family conference. The event itself was a phenomenal success. There cannot be one single person who attended that did not go away impressed with the sheer hard work of the organising team; the quality of service from the hotel staff and the commitment of professionals to help the world’s people affected by CdLS. People came from all corners of the world. Doctors offered new ideas and opinions. Raffles and auctions were held, donations made. Behind the scenes a small group of people were working nervously – would we raise enough money to keep the Foundation solvent. I am pleased to report that in the end we did. But as the final bills were coming in and final donations and conference fees were being paid, the Board felt it prudent to put a freeze on spending, other than for essential support from Jacquie in the office, until we were sure of the financial position.

The conferences and medical meetings cost the Foundation around £100,000. Doctors and national leaders from around the world left Brighton energised and ready to try new ideas. There was a huge cost to pay but it was essential and we did CdLS UK proud. Personally, I would like to thank all of the families from the UK who came to the event or volunteered to help. The Foundation is now ready to recharge its batteries and begin restoring the financial reserves. The figures are with our auditors at the moment and will be shared with families at the AGM in May, and in Reaching Out after that. I will be stepping down as Chairman at that AGM, having had almost 22 years at the helm of this great organisation.

There have been a lot of challenges over that time, but I am looking forward to working with the Trustees in the future as new exciting ideas and systems will come into place. Thank you for your support and friendship over those two decades.

Alan Peaford
Chairman