Abby Conlon and Bonnie Langford served up a record donation for the CdLS Foundation.
	More than 60 people from the UK and Ireland travelled to Grosseto in Tuscany for the CdLS International conference.

This is an increase of 15 families – or nearly 5 per cent – from the previous year.

We continue to believe that our membership represents less than a half of CdLS families in the UK and Ireland and it remains the Trustees’ goal to increase awareness so that families who are not in touch with the Foundation remain so through their own choice and not just because they didn’t know of our existence, or that the CdLS person is incorrectly diagnosed.

There are additionally 192 medical and other professionals (outside of the CdLS Foundation SAC) who receive information.

The Foundation also sends information and newsletters on a regular basis to 166 others in the UK and Ireland who include additional relatives, carers or supporters. This number has increased by more than 15 per cent on the year.

Milestones
The research into the genetic cause of CdLS continued through 2005 thanks to the generosity of The Big Lottery Fund whose support had helped Professor Strachan and his team discover the gene that causes CdLS during the previous year.

Other tests were carried out and enabled the research team to be in a position to hand over the protocols to an NHS funded service in Newcastle that will lead to a test being available through the NHS.

The Foundation would like to take this opportunity to thank the Big Lottery Fund for their kindness and support. The grant – worth more than £145,000 – came at a time when it looked as if our research efforts would stumble and halt. Their contribution directly led to the discovery of the gene which will play a major part in the knowledge of the effect of the CdLS gene as well as aiding faster and more accurate diagnosis – a key aim of the CdLS Foundation.

Another major milestone of 2005 was the launch of the film about CdLS – The Rollercoaster ride. Directed by Jonathan Trace the film has already won one award and has been universally praised.

Events
The Foundation organised two ‘CdLS Connections’ events during the year. The first, in May was in Arundel, West Sussex and the second at Hyde near Manchester

The meetings are held free-of-charge for families and were well attended in both locations. Professionals, including our medical director Dr David Fitzpatrick, Professor Chris Oliver and his team from Birmingham University and Dr Peter Gillett attended one or both of the meetings and met with families.

The Trustees will continue to review the feedback from events such as these to ensure the format meets the needs of the member families.

Research and medical support
Professor Chris Oliver and his team have continued to follow up on the challenging behaviour study and are currently working on an exciting piece of research into people with Cdls and their peripheral nervous system. That project will end in 2006.

The Foundation part-sponsored PhD student Jo Moss (now Dr Jo Moss) who conducted a study into autism and CdLS. Her findings have created a cornerstone for several other research projects.

The Foundation teamed up with two other support groups (Cri du Chat and Angelman’s Syndrome) for a Lottery grant for a further psychological research programme. This application failed but has been re-submitted under the auspices of the CdLS Foundation. Because of many changes at the Big Lottery, a decision on funding has been deferred until Spring 2006.

Fund-Raising and Awareness
The terrible events surrounding the Tsunami that devastated much of the coastal areas of the Indian Ocean as well as the awful earthquake in Pakistan leaving many dead and thousands homeless has had an impact of CdLS fund-raising.

Many of our regular contributors switched their giving to these major catastrophes. This led to a drop of more than one thousand pounds a month from our income when compared to the previous two years.

What could have been a financial disaster for the Foundation was saved thanks to the efforts of one family from Surrey. Abby Conlon’s parents Andrew and Donna had a whole summer of fund-raising events around their village of Farncombe, near Guildford. They ended up raising a magnificent £15,000 – the greatest amount ever raised for CdLS.

The Foundation gratefully acknowledges the tremendous effort that this family made to take on this task.

There were a number of our other regular fund-raisers that successfully added to the Foundation funds. These included the Annual Charity Golf Day for the CiB (The British Association of Communicators in Business); We again filled our five places for the London Marathon and reached our fundraising target for that; Also an increased number of ladies jogged out for the Hydro Active five-kilometre event in London, Birmingham and Liverpool; The short-mat bowls tournament in Gillingham, Kent organised by the Dickens family completed its seventh event and consistently is a valuable contributor to the Foundation.

A number of companies continue to support the Foundation through family connections and many individuals tirelessly fund raise on our behalf. The Foundation would like to acknowledge with thanks the contributions from those families who include: The Barlow family, the Gieraks, The Browns, the Peafords, the May family, the Rileys, the Wrights, the Mephams, the Axtells, the Penneys, the Piries, the Moss, and the Saunders families.

We are also once again greatly indebted to the lovely Bonnie Langford who acts as a great ambassador to the Foundation. She has again nominated CdLS at every opportunity and has led to several thousands of pounds of donation and significant awareness through her website and her public performances

Communications
The Reaching Out newsletter was produced just twice during the year – the third issue slipped into 2006. However, the issues have greater pagination than before and the newsletter continues to be popular with members.

Sadly, the pro-bono support given by a London publishing company has ended and there will be additional costs associated with the publication in the future.

The Trustees acknowledge with gratitude the support given by Newnorth Print of Bedford, who continue to print the publication at cost price.

The Foundation’s award-winning website continues to be a source of information for the public.

However, due to some issues with the site’s contractors it was not updated as much as it should have been.

As mentioned earlier a film about CdLS and the “rollercoaster” existence that our families have was completed and distributed to families. The film made a huge impact on families and is being used as the key information system for responding to newly diagnosed families.

Tragically, two of the “stars” of the film have died since the film was completed and reinforces the urgency of increasing our knowledge and awareness of the syndrome.

International Links
The UK Foundation continues to play an important part in the CdLS World Federation. During June 2005 the Foundation subsidised the travel and registration of all UK families attending the International CdLS Conference in Grosetto, Italy. The UK had among the highest number of delegates hearing first-hand research results and new treatment strategies by doctors from all over the world.

There was also a tremendous opportunity to meet other families. The Foundation provided a special section of Reaching Out magazine to pass on the information.

The next event will be in Niagara, Canada, in July 2007.

The following event will be closer to home – the UK was successful in its bid to host the 2009 conference. This will require significant fund-raising and support by the membership. It is a great honour to host the event and will give us a great opportunity to show what we are capable of.

The UK continues to be well represented on the Global SAC (Scientific Advisory Council) with David Fitzpatrick, Chris Oliver, Tom Strachan, Peter Gillett and Ken Nischal all active members of the council.

Board of Trustees
The Board of Trustees continues to represent the interests of the members with a third of the board being up for election every year.

There are representatives from each of the regions and a good male/female split. However we would always welcome more nominations.

The Board has professionals and parents but we are keen to recruit grandparents and other supporters to help shape the future for the Foundation.

Financial Position
Thanks to the outstanding efforts of our fundraisers as outlined above, the Foundation’s accounts continue to be in good shape.

However, for the first time, our expenditure exceeded our income.

The sensible use of reserves funding in previous years meant that we were able to manage the small net loss and the Trustees are confident that there are sufficient reserves to meet the requirements for finance over the next year.

There was an “overspend” on restricted funds (Lottery grant for research) as the research project was completed. There was some additional expenditure associated with the research, but this was fully allowed for in the budget.

The amount shown as an accrual was because of a delay in the final invoice from Newcastle University that came after the financial year end.

This project is now complete and the accounts closed.

The accounts were completed by the Treasurer, Richard Simmonds and inspected by auditors.

Full copies of the accounts are available to membership on request and a summary of the accounts has been submitted to The Charity Commissioners for inspection.

The CdLS Foundation continues to remain a registered UK charity and is bound by the Government’s guidelines as implemented by the Charity Commission.

Summary and ongoing plans
The Foundation continues to grow in stature and size. We have continued to raise awareness of the syndrome thanks to stories in national and local newspapers. The very effective website and newsletters have reduced the number of advice calls to the Foundation office as more and more of the information is online. However, as this form of communication continues to grow, so does the requirement to feed the system with information.

The Foundation is making the major step of having a separate staffed -office which will mean immediate response to queries and other calls. The office has been at the home of Jane and Alan Peaford for the past 16 years and is outgrowing the space and the available hours.

There is always a danger of small organisations failing when the “working knowledge” rests with one individual. The development of the Board of Trustees with shared responsibilities was the first step and the office and staff is the second. CdLS IS growing and the demands are as great as ever before. It is important that there can be continuity in the information and the service provision.

There is a clear need to focus again on the communication plan. We hope to be able to put some of the film online and to review the design and usage of the Cdls.org.uk website.

We are also working with the World Federation in improving the www.cdlsworld.org site which features the knowledge for the medical professionals and gives access to families to questions that doctors have answered about the syndrome.

With the appointment of an administrator we intend to update our database and will ask families to assist us by returning the data sheets back as soon as possible.

We will also be updating the information booklet on CdLS that is sent out to professionals and families.

As ever, we are grateful to those families who contact us to let us know the effect the Foundation has had on their lives. None of this good work could have been done without the excellent and ongoing support of volunteers and Trustees.

Everyone gives their personal time freely. Many of the Trustees are parents or relatives of CdLS people and to give the additional time to support others who face as difficult a time as they face themselves should never be underestimated by the membership. On behalf of the membership, I would like to express my thanks to all of the Trustees for their valuable support over the past year.

Alan Peaford,
Chairman, February 2006