Upcoming Events
| Chris is Professor of Neurodevelopmental Disorders at the University of Birmingham |
Chris Oliver is Professor of Neurodevelopmental Disorders at the University of Birmingham, having previously been previously Director of the ClinPsyD training course. He trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. He is currently researching gene-behaviour associations, cognitive, behavioural and emotional problems experienced by children and adults with severe intellectual disability and behaviour disorders in people with neurodevelopmental disorders. He is Associate Editor for the Journal of Intellectual Disability Research and on the Editorial Board of Autism, the Journal of Applied Research in Intellectual Disabilities and the Journal on Mental Health Research in Intellectual Disabilities. He is also on the International Scientific Advisory Committee for the Cornelia de Lange Syndrome Foundation, the UK Clinical Advisory Committee for the Smith-Magenis Foundation and is Chair of the UK Cornelia de Lange Scientific and Professional Advisory Committee.
Please check this page for further details
Past Events
West Coast Angels
9th Biennial Angelman Syndrome Association Conference Report
A trip to Brisbane by 6 West Australian families in October 2007 saw Perth nominated to host the 9th Biennial National Angelman Syndrome Association conference…. a very daunting task. We returned full of inspiration & ideas and set about to formalise our WA association and raise the funds necessary to host the conference, knowing well that the 2 years would fly by. Many Cadbury chocolates, movie nights, raffles and a very successful quiz/auction night later we had our funds secured. Thanks also to some generous donations the total raised in excess of $40000.
The Esplanade River Suites in Como, Perth was the venue chosen for the conference held from Friday 2nd to Sunday 4th October 2009. The conference kicked off on Friday afternoon with a pamper session and afternoon tea for the mums whilst the dads headed to Burswood Park for 9 holes of golf and a well deserved visit to the 19th at the end of the round. Friday evening’s Welcome reception provided an opportunity to meet new families and old friends with the children being entertained by our wonderful volunteer students from ECU. The highlight of the evening was Ben Harkin’s solo performance of “One Voice” thoroughly enjoyed by all.
Thanks to the sponsorship of Variety WA the Perth Zoo was host to 18 angels, their siblings and carers on Saturday. The conference room was hired for the day and all food, snacks and drinks catered for. From all reports the children had a wonderful time, enjoyed seeing all the animals and being entertained by Bananas the Clown.
Anne Funke, President of the Angelman Syndrome Association of Australia officially opened the 9th Biennial national conference. Liz Stanley, President of the Angelman Syndrome Association of WA introduced the first ever international guest speaker at an Australian Angelman conference, all the way from Belgium, Professor Bernard Dan. Professor Dan, Head of Department of Neurology at Queen Fabiola Childrens’ University Hospital, Brussels has a long association with Angelman Syndrome having authored and published many books and papers over the years and was delighted to have been invited down under.
In total 100 delegates including 48 families and 15 professionals attended the conference day from all around Australia. The ASA of WA was honoured to have Dr Ron Chalmers, Director General for Disability Services in WA in attendance for the morning session.
Professor Dan’s keynote address, based on his latest textbook, provided an overview of Angelman Syndrome, including the latest information on research, treatments and therapeutics. As well as the keynote address Bernard held informal sessions with the professional delegates, parents of younger angels and parents of older angels during the course of the day. These sessions provided an opportunity for individual questions to be answered and common topics to be addressed. Bernard’s sense of humour and ease of approach was appreciated by all throughout the entire conference weekend. And yes he has promised to come back to Australia in 2011.
Meagan Cross, parent and FAST board member, gave an overview of the Foundation for Angelman Syndrome Therapeutics which has been established in the US and her intention to start an Australian chapter. For further information on FAST Meagan can be contacted via email: meags@crossweld.com.au
Laura Jones, Teacher/Conductor presented an Introduction to Conductive Education and Communication. Laura encouraged us all to take one thing away from her session: that all children have the ability to learn. Laura also followed up with an informal group for interested delegates to learn more about CE, literacy and communication.
Merger of Minds, a small business formed by Eli who has Angelman Syndrome, and his friends provided an interesting presentation on an Individualised approach to communication. The session demonstrated how the Tough Book, with board maker software, can be utilised as a successful communication device.
Dr Ellie Smith, the medical consultant to the Angelman Syndrome Association of Australia presented “Research in Angelman Syndrome, Summary of Dr Weeber’s talks in Australia July 2009”. Ellie described the findings of the scientific mouse model research and the potential for future treatments for Angelman Syndrome. A DVD copy of Dr Weeber’s presentations was provided to all families in attendance. Further copies of this are available for online purchase at: www.angelmansyndromeqld.org
Allyson Thomson presented on her research: Family Care Givers – How do they deal with stress? The research group involved families and carers of people with Angelman Syndrome in Western Australia. The research indicated that relationships, financial strain, perceived lack of support and concern for the future were common to most families.
Jacquie Mills, parent and founding board member of Vela Microboards Australia, presented a very moving introduction to Microboards and how they can be used to create a safe and happy life for your angel. Jacquie explained what a microboard is, how she has developed one for her son Eli and the very positive outcomes it has had for their family. For further information on Vela Microboards please visit: www.microboard.org.au
The afternoon provided an opportunity for informal interest groups and a chance to follow up on some of the days’ topics. The Independent Living Centre of WA kindly provided a static display of paediatric disability equipment including wheelchairs, walkers and car seats, giving delegates a chance to view and try the equipment and ask questions. Kelly Moore, Speech Pathologist from the Independent Living Centre of WA provided a display of communication devices and assistive technology, once again a chance for delegates to ask questions and have “hands on” with different equipment. Kelly was kindly assisted by Yvette Theodorsen, Speech & Language Specialist, Carson St School. Other sessions on offer were the AV display of Dr Christopher Oliver’s presentation at US Conference 2009 on Understanding & Changing Difficult behaviour in Angelman Syndrome, Angels & Therapy Issues discussion group facilitated by Jaquie Mills and “Tips for Angel proofing your home”, facilitated by Leticia Grant.
From the conference evaluations we received, most people found the content of the conference day relevant and particularly felt that Bernard Dan’s sessions were most beneficial to them. The Esplanade River Suites was a popular venue and all enjoyed the food, beverages and service provided. Their professionalism and willingness to do all that we asked went a long way to making the conference the success that it was…greatly appreciated by the organizing committee.
A unique conference dinner on Saturday evening, a buffet dinner cruise on the Swan River aboard the MV Captain Cook, plenty of dancing aided by the unlimited beer & house wine, with spectacular night views of Perth city and Fremantle. The evening was thoroughly enjoyed by all with many kicking on well into the night! Meanwhile the exhausted kids gathered back in the hotel for an evening meal and movie night with carers and once again, our wonderful volunteer teaching students providing activities.
The traditional Sunday service was held at Carson St School and kindly lead by Rhett Harris. Following the service the AGM of the National Association was held and well attended. A family fun day saw more than 150 people, including 21 angels gather at Carson St School. The children were entertained by Roy the Balloon Boy, Dave the Funny Man and the Magical clown and once again the volunteer teaching students did a wonderful job of assisting the kids on the bouncy castle and the play equipment. A sumptuous buffet lunch and icy cold drinks were provided for the day. The adults enjoyed the chance to socialise and one last chance to pick Bernard’s brain!!
An information DVD from video recording of Saturday’s conference day is currently being compiled. Photographers attended events throughout the weekend and have compiled a photo CD. Both DVD & CD are available to purchase through the WA website at: http://www.angelmanwa.com.au.
These should be distributed by Christmas.
In summary the conference was a huge success and comments such as the "best conference ever" and "you have raised the bar too high" were sure appreciated. The feedback received has been most rewarding for the conference organising committee to hear, it made all these long hours and commitment well worth it. There are so many people to thank for their contribution for making the 2009 conference the success that it was. Thanks to those involved in all our fundraising activities, particularly the quiz/auction night, to those businesses that sponsored activities over the conference weekend and to all those individual donations. Also to the National Association and the SA and NSW Associations a big thankyou. Without so much support the conference would not have been possible.
I would like to close in saying a big thankyou to the WA committee of Liz Stanley, Leticia Grant, Lysandra Warren, Fiona Dunn, Linda Chapman, Jaquie Mills and Di Bawden who worked tirelessly over the past 2 years. Also a big thankyou to all the husbands, partners and family for supporting us through some very challenging times.
I wish whoever hosts the 2011 conference the best of luck and I feel I speak for all when I say that we in WA will do all that we can to help you.
Kellie Wild
Conference Coordinator
Angelman Syndrome
Association of WA.
|
|
|