PLENARY / KEYNOTE SPEAKERS
Adam Sloan, Glasgow, Scotland
My name is Adam Sloan. I am 26 years old and I have Down’s syndrome.
I work as a Contemporary Dance Artist with Indepen-dance, Scotland’s largest inclusive dance company. I perform as part of a four person ensemble called IND4 and have danced with them all over Britain and Europe. I love my job because I get to be creative, work with interesting people and travel to fantastic places.
In 2016 I was awarded a lifetime Fellowship of the Royal Society of Arts and Science, one of only five given in Britain to people with learning disabilities. The award was granted to help me develop as a choreographer. Since then I have been working with a mentor to produce a piece of contemporary dance featuring three artists from Indepen-dance. It has been a really exciting process and it has allowed me to fulfil one of my biggest dreams.
It is a real honour to be invited to tell my story at the World Down’s Syndrome Congress. I’m looking forward to meeting people from all over the world and hearing their stories too.
Andy & Sarah Merriman, London, England
I live in north London and I am married with three children; Daniel aged 28, Sarah aged 26, and Joel, aged 21. Following a career in social work, I started contributing comedy sketches for TV shows and I am now a full-time author and scriptwriter for television and radio.
I have served as a school governor and as a trustee of the Down’s Syndrome Association and one of my books, Tales of Normansfield charts the life of John Langdon Down and the history of the unique hospital that he established. I am a keen follower of Curb Your Enthusiasm, Billie Holiday and Tottenham Hotspur – although not necessarily in that order.
A first book, A Minor Adjustment, about my daughter, Sarah, who has Down’s syndrome, was published in 1999 and serialised in the national press. The sequel, A Major Adjustment was published in March of this year.
And so, I come as a double act with my daughter…
I am 26 and live in supported accommodation in north London. I attended mainstream school and achieved the equivalent of four GCSEs. I graduated from Foxes Academy in Somerset and I am now employed as a food and beverage operative at a hotel in central London. I appeared in a BBC radio 4 series Minor Adjustment and in the Channel 4 reality television show, Kitchen Impossible. My hobbies are dancing, listening to music, going to films and theatre and socialising with my friends. I can best be described in my favourite phrase, ‘I Love My Life!’
I am honoured, excited and nervous in addressing the Congress.
Anthony J. Holland, Cambridge, England
I trained in Medicine at University College Hospital, London, qualifying in 1973. After some years in General Medicine I then trained in Psychiatry at the Maudsley Hospital, London, specialising in the field of intellectual disabilities. In 1992 I moved to the University of Cambridge and in 2002 I was awarded the Health Foundation Chair in Learning Disability establishing the Cambridge Intellectual and Developmental Disabilities Research Group (www.CIDDRG.org.uk). This multidisciplinary group has undertaken a broad range of research relevant to the needs of people with intellectual disabilities including, in collaboration with the UK DSA, a series of research studies to better understand the relationship between Down’s syndrome and the risk of developing Alzheimer’s disease in later life. This research and the involvement of people with DS has featured in the film ‘Together’ which was premiered at the Cambridge Arts Picture House to celebrate dementia week. In 2010 I was elected a Fellow of the Academy of Medical Sciences.
Brian Skotko, Boston, USA
I am a Board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital and have dedicated my professional energies toward children with cognitive and development disabilities.
In 2001 I co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. I recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. I have been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” I serve on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress, the Board of Directors for the Band of Angels Foundation, and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources.
I am a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School.
Deborah J. Fidler, Fort Collins, USA
I am a Professor in the Department of Human Development and Family Studies at Colorado State University in the US. My research expertise is in the area of development in individuals with neurogenetic syndromes, with a specific focus on childhood development, early intervention, and educational planning in Down syndrome. I also currently serve as the editor of the American Journal of Intellectual and Developmental Disabilities and Co-Editor of the International Review of Research in Developmental Disabilities.
Elaine Scougal, Dundee, Scotland
In March 2013, I gave birth to twins and on that day received the surprise news that both of my boys, Ollie and Cameron, had Down syndrome. Due to my background in working and volunteering with both children and adults with Down syndrome, our family has always said that receiving the diagnosis wasn’t bad news, it was simply unexpected news. Since that point, I’ve developed an extremely successful Facebook blog page (over 196,000 followers), sharing Ollie and Cameron’s journey as they grow up in a fun and accessible way to highlight that a diagnosis does not define them. Over the past four years I have also delivered several presentations to students at universities throughout Scotland, on topics such as delivering a Down syndrome diagnosis and the importance of early intervention, in addition to presenting in primary schools to raise awareness of Down syndrome at an introductory level. I am thrilled to have the opportunity to share our journey and experiences at the World Down Syndrome Congress.
Fiona Dawson, Ayr, Scotland
My name is Fiona Dawson. I am 36 years old. I live independently in my own home in Ayr. I attended mainstream school gaining Higher Art and a few Standard grades.
After swimming lessons I joined a disability swim club, Kilmarnock Jets and attended many galas. Now living in Ayr, I swim with South Ayrshire Swim Team Para Squad. I am also a member of the GB Down Syndrome team. I have competed at GB Special Olympics since 2001 as a member of Scotland West team. I am hoping to qualify as a swim coach.
The Scottish Commission for Learning Disability gave me the inaugural Sporting Achievement Award in 2017.
I am a member of an Art group; also attend a Drama group and am a member of a health club.
I feel very flattered to be asked to speak at the World Down Syndrome Congress and it will be interesting to meet different people from all around the world.
Isla Ross, Edinburgh, Scotland
I trained as a primary teacher, but my interest in working with pupils who had a variety of needs lead me to a five year post in an Edinburgh special school. Having learnt many skills, strategies and creative learning techniques, I was then appointed to open two Language and Communication Classes, which are resources attached to mainstream schools in Edinburgh. In 2005, I was asked to look at the City of Edinburgh’s provision in mainstream school for pupils with Down syndrome. After observing many pupils and their experiences of school, I outlined a plan which aimed to provide continuity of support for both staff and pupils. Twelve years on, the City of Edinburgh Council is still successfully delivering the model, which is very well received.
Michael J. Guralnick, Washington, USA
Throughout my career my primary research interests have focused on the field of early childhood development and early intervention, with a special interest in children with established developmental delays. My areas of interest include examining the effectiveness of early intervention in a developmental framework, early childhood inclusion, and peer relations. I have conducted a randomized clinical trial designed to improve the peer-related social behavior of heterogeneous groups of children with delays, many with Down syndrome. Other work has been designed to examine the influence of the developmental characteristics of children with Down syndrome to provide a framework to promote inclusion and peer relations. I am a professor of psychology and pediatrics at the University of Washington where I also direct one of the largest research and professional training centers directly related to developmental disabilities in the United States. Additionally, I have strong international interests and am the founder and Chair of the International Society on Early Intervention.
Roy McConkey, Belfast, Northern Ireland
I am Emeritus Professor of Developmental Disabilities at Ulster University and visiting Professor at the University of Cape Town, South Africa and at Trinity College, Dublin.
I have undertaken many different research projects over the past 40 years and written books and articles; many about creating a better of quality of life for people with Down syndrome and their families. I have advised various United Nations agencies and International NGOs. This work has taken me to some 25 countries in Eastern Europe, Africa, Asia and South America. Currently I am assisting Special Olympics International in the global evaluation of their Unified Sports and Healthy Communities programmes. I have previously spoken at Down Syndrome World Congresses in Sydney, Dublin and Cape Town.
Sue Buckley OBE, Kirby Lonsdale, England
I began my career as a clinical psychologist working with individuals with intellectual disabilities in institutional care before children with Down syndrome even had a right to go to school.
I adopted a baby with Down syndrome from one of these institutions and then focussed my work on understanding the development and educational needs of children with Down syndrome. I pioneered early intervention services and inclusive education and have extensive experience of providing training and consultancy worldwide. My work led to the founding of the charity, Down Syndrome Education International (DSE).
I received an OBE from the Queen in 2004 for services to education and in 2016 a National Down Syndrome Congress Education Award “for improving the lives of children with Down syndrome by developing innovative research-based education techniques”. I am Director of Science and Research at DSE and Emeritus Professor of Developmental Disability, University of Portsmouth, UK.
I am looking forward to contributing to the Congress.