The Scene is The Spastic Centre's free fortnightly e-newsletter.
It features news, events, issues, links and contacts for people living with cerebral palsy, their families and service providers.
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Cerebral Palsy Awareness Week 5-11 August 2007
National Cerebral Palsy Awareness Week promotes awareness and understanding about CP within the community. The Spastic Centre is celebrating the week with a range of great activities across NSW, including:
- The launch of the Australian CP register
- Introduction of the ‘Just Like You!’ School Program to the Hunter region. This program aims to increase primary school children’s understanding of what it’s like to live with a disability.
- Technology and Equipment Expo at Coffs Harbour and Spence in the ACT
- Perspectives in Print photography exhibition
- Family BBQ and open day at Prairiewood.
The Spastic Centre would like to thank our major sponsor, Trust for supporting CP Awareness Week 2007. We also thank all the many volunteers and supporters who have helped make the week possible. Please see our calendar of events or phone The Spastic Centre’s Marketing Department on 02 9972 8159 for more information.
Australian Cerebral Palsy Register
On Tuesday 31 July 2007, Professor Fiona Stanley AC, former Australian of the Year and international authority on cerebral palsy, launched the Australian CP Register in Sydney. The Register is a confidential database of information about people with CP in Australia and will be led by The Spastic Centre’s research team.
The concept of a national register was pioneered by Professor Stanley who started Australia’s first CP register in Western Australia in 1976. When all states and territories upload their data, Australia will have the largest CP register in the world. Professor Stanley believes the Australian CP Register will now be a key tool for researchers to identify specific causal pathways.
Rob White, CEO of The Spastic Centre, is encouraging children and adults with CP and their families to join the Australian CP Register. 'Our goal is to reduce the incidence of CP, but there is still a lot we don’t know. We have a big job ahead of us and we’re committed to it, but we need everyone’s help. Potentially the answer to preventing CP lies in the hands of Australians joining the Register.’
Information obtained from the Australian CP Register’s database will also assist organisations like The Spastic Centre to evaluate the effectiveness of interventions currently used in CP management for children and adults. The Australian CP Register is a consent-based register requiring written, informed consent from participants – www.cpregister-aus.com.au or phone the CP Helpline on 1300 30 29 20.
More details about the launch of the Australian Cerebral Palsy Register.
The Spastic Centre’s Strategic Plan
The Spastic Centre has launched a new three-year strategic plan. Its three main goals are for:
- Services that are creative and contemporary
- An influential and strong organisation
- Research that is relevant and makes a difference.
Thank you to all who contributed to the development of the plan, including those who utilised the electronic suggestion box on our website.
Download The Spastic Centre's Strategic Plan.
Health
How to Use the Internet to Support your Health and Well Being
Internet for Health and Well Being is a virtual teaching site run by Intute, a provider of free Internet tutorials. It takes you on a tour of the best health websites that can be found, shows you how to search the Internet for other sites and how to judge if the sites you found are worth using. The website also offers practical examples of people using the Internet successfully.
View Internet for Health and Well Being
Recreation
'd-Ability.Org'
The Disability Leisure, Arts, Sports and Lifestyle Web Guide
'd-Ability.org' has been designed as a place to explore life's possibilities following a disabling injury or illness. Developed by the specialist recreation service at Sydney's Royal Rehab, the site has direct links to the websites of people with a disability and organisations from across the world and with a multitude of backgrounds and abilities.
Links range from mouth painting to mountain biking, fashion to wheelchair football, travel in Thailand to ten-pin bowling. Use these links to find out more about your own abilities and potential from others who have created lifestyle opportunities for themselves following injury or illness. New websites are most welcome too - particularly to build up our Australasian links - and can easily be added via the website itself.
Find the website at www.d-ability.org and/or contact Kel Smith at kel.smith@royalrehab.com.au for more information. The site is to be officially launched on 23 August 2007 at Royal Rehab.
Families
Siblings Australia featured on the 7.30 Report
Siblings Australia was a dream of Kate Strohm, a health professional and journalist who grew up with an older sister with cerebral palsy. In the mid 1990s, Kate began to explore her reactions to her sister and, through contact with other adult siblings, realised her feelings and experiences were not uncommon. During a trip to the US in 1998, she was inspired by the range of support programs available and decided to set up something similar in Australia. The story of Siblings Australia was recently featured on the ABC’s 7.30 Report.
View the full story and the video footage about Kate Strohm on the 7.30 Report.
Research Participants Needed
Seeking Adults with Hemiplegic CP
Members of a research team at The University of Sydney, led by Associate Professor Louise Ada, are working with adults with hemiplegic CP in order to find out which motor impairments (muscle weakness, stiffness, tightness, incoordination, and involuntary movements) cause the most difficulty in reaching and manipulation, which in turn affects quality of life.
They are looking for adults with hemiplegic CP (over 18 years old) who would like to receive a FREE testing of the affected arm. This process will involve the measurement of motor impairments and hand activity in the affected arm. The study is being conducted at Cumberland Campus, University of Sydney, Lidcombe, Sydney. Data collection will take approximately one and a half hours and you will be reimbursed for your travel costs, whether you come by taxi or your own vehicle.
If you are interested in participating or would like to know more please contact Angel Chiu on 0402 721 820 or
email hchi9899@mail.usyd.edu.au
Conferences... Workshops... Seminars
Family Advocacy Conference – The Odyssey
The Odyssey: A Journey of Enrichment and Possibility is the theme for the first Family Advocacy Conference. This two-day Conference, to be held in Sydney, 25-26 October 2007, will provide an opportunity to hear about real life experiences and examples from inspirational local, national and international speakers. Additionally, participants will have lots of opportunity to interact with speakers and other people attending the Conference to further share ideas and experiences.
Prices start from $140 per person and to see the full information and register go to the Family Advocacy website and click on the conference link on the right.
Winter Literacy Intensive
This week long literacy course is part of the AGOSCI national tour in 2008. Run by Karen Erikson and David Koppenhaver, the course will cover theoretical and practical aspects of literacy instruction for children and adults with complex communication needs. It is an event that will be useful for both parents and professionals.
It will be held in Rawson Village, 90 minutes out of Melbourne, from 30 June – 4 July, 2008. It costs $1500 but that includes all food and accommodation. Only 30 people will be chosen so get in quick! More details at www.agosci.org.au Click on the link at the top left of the page.
Accessing the Future: Assistive Technology in Education and Employment
This forum will provide participants with information and training relating to the use of assistive technology in education and employment. It includes hands-on sessions to use and learn assistive technology programs, information sessions on the issues surrounding the use of technology, assessment strategies, a range of technology options covering a variety of support needs and costs (including freeware) and a mini expo with Australian based technology suppliers.
The forum will be run in three different locations during September 2007: Sydney Monday 10, Newcastle Wednesday 12 and Bomaderry Friday 14. It costs $50 per person, which includes all food and sessions. More information about Acessing the Future.
AusACPDM 2008 
The next Australasian Academy of Cerebral Palsy and Developmental Medicine Conference for will be held 11–13 April 2008 at the Sofitel in Brisbane. Keynote speakers are:
Dr Diane Damiano, PhD PT - a Research Associate Professor of Neurology at Washington University in St Louis and Director of a 3-D motion centre for assessment of children with cerebral palsy. She practiced as a paediatric therapist for over 10 years before receiving her PhD in 1993. Her research focus is on strengthening and activity-based exercise to enhance motor function and neural recovery in cerebral palsy.
Dr Richard D. Stevenson - a Professor of Pediatrics at the University of Virginia School of Medicine in the Department of Developmental Pediatrics. He is actively involved in clinical care, teaching, and patient-oriented research at the Kluge Children's Rehabilitation Center and Research Institute of the University of Virginia Children’s Hospital. His main interest and expertise relate to care of children with cerebral palsy, and particularly the way secondary conditions such as malnutrition, osteoporosis, aspiration and chronic pain affect the health and well being of children and their families.
The deadline for submission for free paper and poster abstracts as well as workshops is Monday 6 August 2007. More details on the AusACPDM 2008 Conference website.
Technology
Step-By-Step Communicator
The BIG Step-By-Step Communicator can record a series of messages, instructions or parts of a story. To activate the first message, simply hit the large switch cap. The second message can then be activated by hitting the switch cap again, and so on. The user ‘steps’ through the entire set of messages and the sequence then starts from the beginning. Available in a variety of switch cap covers, the BIG Step-by-Step Communicator is a great introduction to AAC devices or an inclusive learning tool for home or at school.
Priced from $278, the communicator is available from Technability
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Disclaimer
Opinions expressed in items of The Scene are the individual opinions of the respective authors and do not necessarily represent the opinions of The Spastic Centre or the editors. Products and companies featured in The Scene are not necessarily endorsed by The Spastic Centre. The Scene is intended to be informative only and should not be relied on as medical or other technical advice on any matter. The Spastic Centre and editor take no responsibility for the information published in this newsletter or any person's actions in reliance on that information.
