We are seeking additional Trustees and Directors to help lead our work improving education for children with Down syndrome. If you may be interested, please get in touch and consider coming along to a briefing in London on 26 February 2013.

There are an estimated 13,000 children (under the age of 18) with Down syndrome in the United Kingdom, 83,000 in the United States, 8,000 in Canada, 7,000 in Australia, 145,000 across Europe and (perhaps) 1.6 million worldwide. Almost all should (and could) be receiving more effective early intervention, speech therapy and education than they do – helping them to lead more independent, productive and fulfilling adult lives. Improving outcomes for all of these children is what DSE exists to do.

Down Syndrome Education International is a unique charity with a successful 25-year track record. We focus on improving education for children with Down syndrome through research, services and resources supporting families and educators worldwide.

The charity is widely regarded as a world leader in its field. Over three decades, we have advanced understanding of the children’s learning needs, investigating early language development, reading and literacy, memory, number skills, behaviour, inclusion and more. We work closely with colleagues at Universities around the UK and around the world.

Our current research interests include early language development, early cognition and problem-solving, attention and executive function, working and short term memory, speech clarity, reading instruction, reading comprehension, numeracy and social development and behaviour. In several of these research areas, we have practical candidate interventions ready for evaluation that we believe stand a good chance of being shown to be effective at improving critical educational outcomes for children with Down syndrome. With the necessary funding in place, each of these trials could deliver results within 18 to 36 months and (if successful) then immediately start to transform speech therapy, early intervention and teaching practice for children with Down syndrome.

Our books, teaching materials, films and web sites help over 150,000 people in over 170 countries worldwide annually. We are actively developing our See and Learn early teaching materials to help families, teachers and therapists to support language and reading, memory, speech and number skills development during the important early years. We have recently published a new, evidence-based primary school reading and language intervention – the direct result of a major research project and the first rigorously evaluated intervention designed for children with Down syndrome.

We also present web seminars, workshops and conferences to audiences around the UK and around the world. We are regularly invited to speak at major conferences, and in recent years have hosted education conferences in the UK, the US and Ireland.

Changing times

Down Syndrome Education International has been changing over the past 5 years to do more to meet the needs of families and children throughout the world.

In 2007, we began to focus more of our attention towards research. For several years prior to this, our research activities had slowed while we expanded our publishing, training and consulting activities. In 2008, we secured a major grant from the Big Lottery Fund to evaluate a reading and language intervention (that we are now publishing). Also in 2008, we established Down Syndrome Education USA to develop services and activities to support families and children with Down syndrome in North America, and to further develop research activities in the US.

Since late 2008, we have had to adapt to the new economic realities, which in the UK have included greater competition for charitable funding from trusts and foundations, and reduced funding from corporations and government. Local government cutbacks in the UK following the 2010 Spending Review (in part) led to the closure of local support services for families and schools in southern England in 2011.

Over the past few years, we have grown our income (figure, right) – in part by growing revenues from social enterprise activities. Many of the resources and services that we supply can only be provided by charging for them. With some sources of charitable income on the decline, we are increasingly having to rely on these revenues to not only cover the costs of the services, but also to contribute to future research.

During the past year, we have restructured our UK operations, moving to smaller offices in the north of England and outsourced much of what we used to do in-house. We are increasingly funding researchers in Universities rather than employing permanent researchers ourselves. We are also shifting our focus to training professionals working for other charitable and public sector organisations, rather than being a ‘frontline’ training provider. These changes are not only improving efficiency, but also increasing the impact that we have on the education of thousands of young people with Down syndrome.

Seeking new Trustees and Directors

With these strategic shifts in mind, we are now seeking to expand both the Board of Trustees of Down Syndrome Education International (DSEI) and the Board of Directors of its subsidiary social enterprise company, Down Syndrome Education Enterprises CIC (DSEE). DSEI is a UK-registered charitable company through which we operate our UK and international research activities and charitable services. DSEE is a UK-registered community interest company that is wholly owned by DSEI and through which we operate publishing, training and consulting services. Both DSEI and DSEE work in a close strategic partnership with Down Syndrome Education USA – our associated US nonprofit through which we operate publishing, training and consulting services in North America.

We are seeking volunteers who wish to serve on either one of these Boards and help us do more to improve education for children with Down syndrome everywhere. We are interested in recruiting parents, education professionals and researchers with relevant experience and expertise. In addition to educational and research expertise, we are seeking volunteers with experience in accounting and finance, sales and marketing, publishing and distribution, and general business management. We also expect all our Trustees to assist with fundraising in any ways they can.

Both Boards meet three times each year in London, in between which we communicate regularly by email and occasional teleconference.

Trustees of DSEI are responsible for setting research priorities, fundraising and charitable services. Directors of DSEE are responsible for developing and operating effective support services and publications that help improve outcomes for children with Down syndrome. Clearly, the two Boards work closely together and there is some dual representation.

Members of both Boards serve as company directors (DSEI is a limited company as well as being a charity). Members of the DSEI Board also serve as charity Trustees. Further information about the role of charity Trustees is available in the Charity Commission’s publication The Essential Trustee: what you need to know (PDF).

We do not remunerate DSEI Trustees or DSEE Directors. However, we can cover out-of-pocket expenses.

London briefing event, 26 February 2013

If you are interested in helping us continue to improve education for children with Down syndrome, we invite you to get in touch.

We are holding a meeting on 26 February 2013 in London to provide information to anyone interested in becoming a Trustee or Director and to give you an opportunity to meet staff and existing members of the boards.

The briefing will be held at 11:00 in central London and followed by a sandwich lunch at 12:30.

Further information

If you would like to attend the briefing or if you would like further information, please contact me at frank@dseinternational.org