On April 19 2013 PWSAI hosted a hugely successful conference entitled “Behaviour and Mental Health in Prader-Willi Syndrome”. 140 people attended this event. They included representatives from 28 families in which there is a person with PWS and a wide range of professionals, including psychologists, behaviour support specialists, care assistants, nurses, paediatricians, teachers, special needs assistants, special needs coordinators and researchers. PWSAI was particularly grateful to our speakers who hailed from the US, the UK and Ireland and generously shared their vast expertise with us. As a resource, the advance information relating to the conference appears below. UPDATE! >> See below for links to some of the speakers’ presentations
WELCOME. Our 2013 Conference is a one-day event aimed at both professionals and families, seeking to provide critical information about behavioural and mental health issues associated with Prader-Willi Syndrome. We are delighted to announce the following exciting programme:
|09:30-10:00||Registration and Refreshments|
|10:00-10:15||Welcome and brief rundown of the day’s events|
OCCURRENCE OF BEHAVIOURAL COMORBIDITIES IN PEOPLE WITH PWS: INFLUENCE OF DEVELOPMENT AND COMPARISONS WITH OTHER NEURODEVELOPMENTAL DISORDERS
Professor Louise Gallagher, Trinity College Dublin Prof. Louise Gallagher is a Professor of Child and Adolescent Psychiatry in Trinity College Dublin and a Consultant Child and Adolescent Psychiatrist with the HSE/National Children’s Hospital, Tallaght.
UNDERSTANDING THE EATING DISORDER AND MENTAL HEALTH NEEDS OF PEOPLE WITH PWS
Professor Tony Holland, University of Cambridge Prof. Tony Holland is psychiatric adviser to the UK PWS Association and also their President. He is the scientific representative for the UK PWS Association and is on the Board of the International PWS Organisation (IPWSO). CLICK TO DOWNLOAD TONY HOLLAND’S PRESENTATION
UNDERSTANDING BEHAVIOUR IN CHILDREN AND ADULTS WITH PRADER-WILLI SYNDROME
Professor Chris Oliver, University of Birmingham Prof. Chris Oliver is a Professor of Neurodevelopmental Disorders at the University of Birmingham, UK, and director of the Cerebra Centre for Neurodevelopmental Disorders. (Accompanied by Leah Bull and Kate Woodcock.) CLICK TO DOWNLOAD CHRIS OLIVER’S PRESENTATION
CAPACITY LAW AND SUPPORTED DECISION MAKING IN THE CONTEXT OF PWS
Anna Arstein-Kerslake, National University of Ireland, Galway Anna Arstein-Kerslake holds a Bachelor of Arts (B.A.) degree in Sociology from San Diego State University (SDSU) and a Juris Doctorate (J.D.) degree in Law from the City University of New York (CUNY) School of Law. Anna has held a variety of positions in the field of disability rights and is a Marie Curie Research Fellow at the Centre for Disability Law and Policy, NUI Galway, where she is working on the project “Restoring Voice to People” focused on securing the rights to legal capacity and supported decision-making for people with disabilities. CLICK TO DOWNLOAD ANNA ARSTEIN-KERSLAKE’S PRESENTATION
MEDICAL MANAGEMENT OF PWS
Dr Judith Meehan, Trinity College Dublin Dr Judith Meehan, Assistant Professor, Department of Paediatrics, is a Trinity College Dublin lecturer who is based at the department of Paediatrics in Tallaght Hospital, where she works on the pediatric endocrinology team.
ENABLING, EMPOWERING AND SUPPORTING: PROVIDING POSITIVE BEHAVIOUR SUPPORT FOR PEOPLE WITH PWS IN A RESIDENTIAL SETTING
Janet Daly, RehabCare Janet Daly is a Residential Services Manager for RehabCare and holds a Masters in Management of Not-For-Profit Organisations (Ma.M.).
|16:00-17:00||General Q&A around Behavioural/Mental issues directed at a top table (speakers) with full participation of all attending.|
The Conference Venue is Bewleys Hotel Dublin AirportThis Bewleys Hotel offers a free 24-hour shuttle to and from Dublin Airport, which is 7 minutes away. Located just off the M1/M50, it has a regular bus service to Dublin’s centre, which is just 8 miles away. If you require accommodation, book directly with Hotel and mention PWSAI conference >> Contact: Caroline Miller, Conference and Banqueting, Bewleys Hotel Dublin Airport, Baskin Lane, Swords, Co. Dublin // Telephone: 01-8711219 (Direct Dial) // Fax: 01-8711299 // Email: email@example.com
How to Register
Registration (€20 for all attendees) is now OPEN. To register, click here (links to iregister.ie)
For queries, contact Ann Grassick on (087) 9354914 or firstname.lastname@example.org
For the Media
Prader-Willi Syndrome is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete development of the genitalia, cognitive disabilities, and problem behaviours, and is probably most recognised by a chronic feeling of hunger that can lead to excessive eating and subsequent life-threatening obesity. The condition, which is caused by the absence of certain genes on chromosome 15, was first described in 1956 by Swiss doctors Prader, Willi, and Labhart. For further information, see our PWS FAQ here.