This year will mark the 30th anniversary of the day I received a letter from a father of a young girl with Down syndrome describing her (then) surprising aptitude for reading. This letter, from the late Leslie Duffen about his daughter Sarah, was the start of a fascinating journey.
During this time I have been privileged to be involved (along with many colleagues here and around the world) with groundbreaking research that has delivered marked improvements in the support and education offered to young people with Down syndrome today. There is still much to do to properly educate and inform all educators and therapists working with our children, but there has been notable progress in many parts of the world.
Leslie's letter also marked the beginning of what was to become Down Syndrome Education International. Starting in the early 1980s as a support group for a few dozen families engaged in our earliest research projects, the charity now delivers support to over 75,000 families and professionals in over 180 countries each year.
Ongoing practical research
With a growing team at our centres in the UK and the USA and working with partners at Universities around the world, we have a busy, ongoing programme of research, including:
* Classroom reading and language teaching trial - the largest randomised controlled intervention trial to date will be underway at two centres in the UK in a few months' time and (if the results are as expected) will result in practical, assistant-delivered, daily reading, speech and language support for children in schools everywhere (supported by the UK Big Lottery Fund).
* Early reading pilot study - a pilot trial of two early literacy intervention approaches is underway with colleagues at the University of Denver, Colorado, USA (supported by The Rocky Mountain Down Syndrome Educational Fund, the McDonnell Foundation and the University of Denver).
* Early years studies - ongoing studies are investigating the factors influencing differing rates of development, effects of signing on language development and early indicators of social communication and behaviour difficulties - including early predictors of autism spectrum disorders (supported by The Sue Buckley Research Fund and general funds).
* Attention profiles - a study at the University of Oxford, UK, is examining early attention profiles and their impact on literacy and numeracy development (supported by The Sue Buckley Research Fund and the UK Economic and Social Research Council).
* Reading and language - a study is underway at the University of York, Centre for Reading and Language, UK, investigating the interrelationships between oral language and reading skills (supported by The Sue Buckley Research Fund and the UK Economic and Social Research Council).
* Oral motor abilities - a study investigating oral motor control, speech, language, and non-verbal abilities will start at Lancaster University, UK, in April 2009 (supported by The Sue Buckley Research Fund and the UK Economic and Social Research Council).
In addition, we have several studies 'ready to go' when we can secure funding. These include:
* Speech and language intervention at home - an evaluation of an intervention to improve speech clarity supported by speech and language therapists but delivered at home by parents is planned with colleagues at Macquarie University, Sydney.
* Working memory computer training - an evaluation of the effects of computer-based training to improve working memory is planned in partnership with colleagues in the Psychology Department, University of York, UK, who have already demonstrated the training helps working memory in other children with delays.
Expanding global information and advice services
Throughout its history, Down Syndrome Education International has remained focused on practical research that delivers tangible benefits to children and young people with Down syndrome, and on communicating up-to-date and effective advice and information based on this research to families and professionals. Coupled with our extensive experience delivering educational services, support and specialist advice, this model ensures that the research quickly informs effective practice.
This is a model we remain committed to today as we continue to expand our advice, support and information services to improve life for young people with Down syndrome around the world.
We have an exciting programme of ongoing and new information and advice services, including:
* Down Syndrome Issues and Information books online - from birth to adulthood, our Down Syndrome Issues and Information books offer comprehensive information and practical guidance for families and professionals.
* Step-by-step early language teaching - our new See and Learn early language programme (available free online) offers step-by-step guidance to support early language development. We are working on further steps in the language and reading programme and developing practical resources for speech, memory and number development.
* New Down Syndrome Education Conferences - reaching more people in more places with focused tracks for families and professionals, our new conferences offer high quality, evidence based training.
* Global outreach with local impact - from California to Kiev, we are working with partners around the world to support improved support and services on the ground for young people with Down syndrome and their families.
* New online seminars and interactive events - we are launching a series of online seminars and interactive events for families and professionals to be delivered via the Internet via the latest web meeting and web conferencing technologies.
* New teaching reading film - continuing our series of Down Syndrome in Practice films, we will publish a new film on teaching early reading to young children with Down syndrome later this year.
Supporting a better future
Most of our work depends on charitable giving.
Some of these activities are covered by specific grants we have secured - such as the funding from the UK Big Lottery fund for the reading intervention trial.
However, most of our day-to-day activities and much of our ongoing research programme depend on the generosity of thousands of families and friends around the world.
With an effective model of working that is firmly focused on delivering tangible outcomes, we operate our activities highly efficiently. To deliver all of the ongoing activities described in this letter our global operating expenses will total £820,000 (or $1,230,000 or €950,000) during 2009.
That is just under £11 (or under $17 or €13) per person we will help this year.
To ensure this work continues, we need your support today. There are many ways that you can give your support -
* You can donate securely and quickly online today to Down Syndrome Education International (a UK registered charity) or to our associated US nonprofit, Down Syndrome Education USA.
* You can give regularly, be kept informed and receive exclusive members' rewards by joining our new Supporters Club.
* You can organise a fundraising event - perhaps a sponsored sporting event or encourage your school to organise one of our fun, educational and easy Up for Reading events.
Your donation - however large or small - will go a long way towards improving the lives of young people with Down syndrome everywhere.
Sue Buckley OBE
Down Syndrome Education International
Down Syndrome Education USA