Even by our usual standards, 2009 has been an exhausting year. It has been a year in which we have provided more advice and support to more people in more places than ever before. It has also been a year in which we have invested more in research than we have at any time in the past 30 years. These are great achievements, for which sincere thanks goes to our donors, customers, volunteers and staff.
Our research strategy offers practical, predictable progress for people with Down syndrome living today.
Over 100,000 people in nearly 190 countries rely our online information services each year.
From our offices in California, we have launched a new online store and are starting to build a team to improve the services we can offer across North America and beyond, and to further expand our research activities.
Over 15,000 people in over 100 countries are already using See and Learn Language and Reading.
Over the next 10 years, 2 million children with Down syndrome will be born in countries where they will be lucky to survive childhood. Our Global Education Fund is working to improve care and education for people with Down syndrome living in low and middle income countries.
Helping more people than ever before
Throughout the year, we have continued to develop an ambitious new research agenda focused on delivering practical results that will improve lives in the near-term. Our research strategy builds on what we already know can improve many aspects of development and cognition, offering practical, predictable progress for people with Down syndrome living today.
Meanwhile, research has little purpose if we do not ensure that it improves practice. We continue to disseminate information and guidance widely. Visits to Down Syndrome Online are up 75% on last year and now exceed 8,000 every week. Over 100,000 people in nearly 190 countries are now regularly accessing our books and articles online. Over 15,000 people in over 100 countries are already using the first steps in the See and Learn Language and Reading programme – now available online and in print in US as well as UK English editions. Over 1,000 people from 20 countries attended our new education conferences this year and their feedback has been fabulous. A few thousand more people have attended workshops and seminars presented by our staff around the world during the past year.
Demonstrating effective interventions we can deliver today
With £440,000 ($750,000 or €500,000) pledged by the UK Big Lottery Fund over four years, we began 2009 starting one of the largest studies of a practical and targeted educational intervention for children with Down syndrome. This study will evaluate a language and reading programme designed for use in classrooms through a multicentre, randomised trial. Our UK research team is working with partners at the Centre for Language and Reading at the University of York. Recruitment and baseline assessments have been completed and the first intervention groups are now receiving the additional regular language and reading instruction.
We are particularly excited about this study because it aims to show that a carefully targeted intervention, that can easily be provided with existing resources in ordinary settings, can make marked differences to rates of progress. This is where research meets practice and can make the most impact for young people with Down syndrome. We need more studies like it.
Understanding early development in detail
We have also continued to invest in longitudinal studies of preschool children with Down syndrome. This work is building into one of the largest and most in-depth investigations of language, cognition, motor and social development ever undertaken for young children with Down syndrome. It is enabling us to explore the factors influencing differing achievement levels, how signing influences spoken language development and to examine early indicators of emerging social and behavioural difficulties.
These studies are starting to show interesting, and sometimes surprising, preliminary results and we anticipate that they will establish many important and interesting findings over the next few years. They have been made possible by many donors’ generous support for The Sue Buckley Research Fund.
Investigating early reading
We have also recently started a new project to provide more information about early reading – particularly how different factors influence reading achievement and how early reading achievement influences spoken language development. This work has been made possible by a grant from the Wates Foundation.
New online stores
Seeking to better serve our customers around the world, we have launched not one, but two, new online stores this year.
Serving clients throughout Europe, the Middle East, Africa, Asia and Oceania, our international shop opened in January. Through this shop, we offer a choice of three currencies and worldwide shipping from our centre in the UK. During the summer, we launched our US-based store, serving customers in North and South America and beyond with shipments from Down Syndrome Education USA’s offices in California.
Both stores offer specialist resources recommended by our professional team, including Numicon number teaching materials, books from Woodbine House, reading materials from POPs and Greenhouse Publications and, of course, our own Down Syndrome Issues and Information books, Down Syndrome in Practice DVDs, Down Syndrome Research and Practice journals, and See and Learn kits.
US research and education centre
Down Syndrome Education USA is not just a base for our US online store. Early in the year, we moved into offices in California and opened our first US research and education centre – a joint venture with the Down Syndrome Foundation of Orange County. From this new base, we are starting to build a team to improve the services we can offer across North America and beyond, and to further expand our research activities.
This is an exciting venture that is already creating new resources, including the US English adaptations of the first steps in the See and Learn Language and Reading programme. DownsEd USA and the Down Syndrome Foundation of Orange County continue to work together to evolve the foundation’s successful Learning Program and the further development of See and Learn.
Down Syndrome Education Conferences
This year, we introduced new education conferences with two events in the UK and one in the USA.
We designed these conferences to offer the best, in-depth training experience for professionals and families, with tracks targeting the preschool, childhood and teenage years, as well as a track for speech and language professionals.
By hosting these at different locations around the world, we are working to bring top quality training opportunities to many more people. We are currently finalising our 2010 schedule and expect to announce it shortly.
Global Education Fund
In March, we launched the Down Syndrome Global Education Fund to secure support for services to improve care and education for people with Down syndrome living in low and middle income countries. This is building on work over the past few years to develop partnerships and projects to support people with Down syndrome and their families in South Asia and Eastern Europe.
The plight of most of the world’s children with Down syndrome is desperate. Over the next 10 years, 200,000 children will be born with Down syndrome in countries where they can expect to receive knowledgeable healthcare, early intervention, education and social support, and be likely to live beyond 60 years. At the same time, 2 million children with Down syndrome will be born in countries where they will be lucky to survive childhood. Many will die during their first two years of life from malnourishment, treatable diseases or medical conditions. Others will be discarded by the societies into which they are born and left to wither away in inhuman institutions.
We are committed to changing this by ensuring that our research and services deliver benefits to people everywhere. We will continue to work to translate and adapt resources and to expand our outreach services.
Looking ahead
We have many activities on our agenda for next year. We hope to start an exciting preliminary trial of a working memory training intervention that – if successful – would be hugely important for improving many areas of cognitive function. We are also planning a trial of interventions designed to improve speech clarity.
We have lots of new research, practical guidance, news and reviews articles due to be published in Down Syndrome Research and Practice. We have a series of ‘key facts’ advice summaries ready to publish that will cover the most commonly sought advice on development and education, and provide easier direction through the wealth of content on our web sites. The last few books in the Down Syndrome Issues and Information education series are finally on the presses and we are progressing the Down Syndrome Issues and Information health series.
We need your help
Despite these many achievements, we are struggling to bring in sufficient charitable income to support all of our activities. Some of what we do is (just about) self-financing, but most depends on charitable funding. Even though we have secured important new grants for some specific projects, our charitable income from donations, events, legacies and appeals has fallen by 37% over the past 10 months, leaving us £150,000 ($250,000 or €170,000) less to fund our core activities this year.
This is now not only delaying important new projects, but also starting to put vital existing services at risk. While big grants and new projects often grab the headlines, our core services that provide reliable support to thousands of families every day keep on going thanks to regular support from people around the world.
When I am out and about or online talking to families, researchers and professionals, I am often told that DownsEd appears bigger and more successful than is perhaps the case. People are often surprised to hear that we only have 6 professional staff conducting research, authoring books and articles, and providing training and consulting. They (and both online stores) are supported by just 3 administrative and finance staff, only 2 people covering all our publishing, web sites, marketing and fundraising work, and 7 young adults with Down syndrome employed part time to make many of our publications in our workshop. Then there is me and a part time director in the US.
If we are to continue to improve education for young people with Down syndrome, we need to grow our capacity, nurturing new expertise and experience among a larger team of researchers and practitioners. This will take time and sustained investment.
We are committed to doing more for more people with Down syndrome. Online services, including free access resources, remain central to achieving this. So too do wider-reaching training, consulting and outreach services. Underpinning all of our work is practical, scientific research.
Research has the potential to help children with Down syndrome everywhere. Our work is supplementary to, and supports the work of, local and national associations around the world and it depends on the support of families and organisations everywhere.
Thank you for your continued support.
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