International Bureau for Epilepsy Promoting and supporting the work of 122 member associations in 92 countries around the world EPILEPSY AUSTRALIA COUNTRY OF OPERATION Australia TYPE OF IBE MEMBER Epilepsy Australia proudly became an Associate Member of IBE in 2008 WHO WE ARE Epilepsy Australia is the national coalition of Australian Epilepsy Associations operating as a federated model that matches the governance of Australia EPILEPSY AUSTRALIA’S MEMBER PROMOTING BEST PRACTICE ASSOCIATIONS: U National Seizure First Aid guidelines. U Epilepsy ACT U Skills in Epilepsy Care & Management. U The Epilepsy Centre of South Australia & the Developed by Epilepsy Australia, in Northern Territory partnership with Victoria University of U Epilepsy Tasmania Technology, this nationally accredited course U Epilepsy Foundation of Victoria is the fi rst of its kind in Australia and is U Epilepsy Queensland delivered by member associations. U Epilepsy Association of Western Australia U Community & Professional Education Programs delivered nationally by qualifi ed RANGE OF OPERATION epilepsy trainers. U Epilepsy Australia thinks nationally and delivers locally. INFORMING OUR COMMUNITIES U Member associations are community-based Epilepsy Australia is committed to publishing organizations providing services to local, information of the highest standard. Our regional and remote communities across publications include: Australia. U Sudden Unexpected Death in Epilepsy: a U As the largest consumer-led epilepsy global conversation. organization, Epilepsy Australia actively U The Epilepsy Report. delivers counselling, support and information U Information Kit for Australian Indigenous to all who access our services and is communities. committed to supporting the Australian U Epifi le: an epilepsy management manual. community in making enlightened and fully U Seizures & Epilepsy: answering frequently informed responses to epilepsy. asked questions. U Various books and fi rst aid videos. EPILEPSY AUSTRALIA’S MISSION IS TO U Acknowledging our cultural diversity, U Produce comprehensive information on information on Seizure First Aid is available epilepsy and seizures, and deliver accredited in 20 languages. education and training programs U Raise awareness and understanding of CHANGING COMMUNITY ATTITUDES epilepsy and seizures within the wider Epilepsy Australia’s Trivia Challenge is community an educational event conducted throughout U Promote and facilitate research into the Australian schools each year. Designed to medical and social aspects of epilepsy, and develop an understanding of epilepsy and U Advocate for people living with epilepsy enhance general knowledge by using a where a national outcome is sought. specially developed trivia questionnaire based on the curriculum, Trivia Challenge informs SUPPORTING OUR COMMUNITIES thousands of young Australians each year Epilepsy Australia has 31 full time dedicated on basic epilepsy information and fi rst aid service staff locally delivering specialist for seizures. Over 40,000 school children epilepsy services across the country. This participate in this event each year. multidisciplinary team comprises registered nurses, counsellors, psychologists, teachers, INFORMING POLICY MAKERS disability support workers, social researchers, Epilepsy Australia sponsors and facilitates and a specialist epilepsy librarian. applied social research into epilepsy that aims Specialist services include: to inform government and policy makers of the U National helpline service – 1300 852 853 impact of living with epilepsy. U Counselling & personal support U Social Epileptology: Understanding social U Client focussed workshops and seminars aspects of epilepsy. Editors Jaya Pinikahana U Professional development & workplace & Christine Walker education U Epilepsy in Australian Policy: Dr Christine U Hospital based clinics Walker U Community awareness programs U Researching the personal impact of epilepsy: U Advocacy & referral services Dr Christine Walker U Support groups U The impact of Epilepsy on the Psychosocial U Recreational programs & weekend retreats Functioning of Young People: Allison Clarke CONTACT DETAILS Denise Chapman Executive Offi cer PO Box 1049, Baulkham Hills NSW 1755, Australia Tel: +61 (0)2 9674 9966 Fax: + 61 (0)2 9620 7087 National Helpline: 1300 852 853 www.epilepsyaustralia.net [email protected] International Bureau for Epilepsy 1961 - 2011 50 years focussed on epilepsy International Headquarters, 11 Priory Hall, Stillorgan, Blackrock, Co. Dublin, Ireland. Contact: Ann Little, Executive Director. t +353 1 210 8850 f +353 1 210 8450 e [email protected] www.ibe-epilepsy.org International Bureau for Epilepsy Promoting and supporting the work of 122 member associations in 92 countries around the world EPILEPSY QUEENSLAND INC., AUSTRALIA COUNTRY OF OPERATION Australia TYPE OF IBE MEMBER Associate Also a member of JECA which is a full member FOUNDING DATE 19 February 1969 (formal establishment) INITIAL AFFILIATION TO IBE 2009 fi rst year of affi liation as Associate Member TYPE OF ORGANISATION Individual membership Providing services to anyone (membership not a necessity) RANGE OF OPERATION State of Queensland THE GOAL OF OUR ORGANISATION PARTICULAR SPECIALISM Epilepsy Queensland enhances quality of life Children with epilepsy for people with epilepsy and their families. The Little Poss Program (Poss is a possum with Epilepsy Queensland is bringing epilepsy out of epilepsy) which comprises 2 books, a show the shadows. that visits school, a club which has a regular newsletter for children, activities (such as OUR GOALS: birthday parties), merchandise, activity packs U To create a supportive environment for people etc. with epilepsy and their families. U To empower people with epilepsy and their ON-LINE PROGRAMS families. U Forum called “Talk Epilepsy” where people U To contribute to the scientifi c understanding of can chat and offer/gain mutual support. epilepsy through research, education and its U Site called “Learn Epilepsy” with self-paced application. learning modules about different aspects of U To ensure health, welfare and other services epilepsy. respond appropriately to the needs of people U Annual Awards Ceremony: for example with epilepsy and their families. for best role model, or best tertiary student U To ensure appropriate policies for people with project on epilepsy. epilepsy are included in public policies in all sectors. U To ensure the long-term sustainability of Epilepsy Queensland Inc. OVERVIEW OF SERVICES U Information about epilepsy through brochures, information sheets, seminars, newsletters, fact sheets, books and the internet U Support and counselling U Education and in service training for people working in the health, disability or education sectors. U Advocacy U Psychosocial research U Community awareness program U Personal development and respite through activities and retreats (for example, camps for children/families, retreats/pamper days for mothers) U Special programs for: U Children U Teenagers U Families with a child who has epilepsy and high support needs CONTACT DETAILS Helen Whitehead Chief Executive Offi cer Epilepsy Queensland Inc, P O Box 1457, Coorparoo BC 4151, Queensland, Australia [email protected] Phone 07 3435 5000 www.epilepsyqueensland.com.au International Bureau for Epilepsy 1961 - 2011 50 years focussed on epilepsy International Headquarters, 11 Priory Hall, Stillorgan, Blackrock, Co. Dublin, Ireland. Contact: Ann Little, Executive Director. t +353 1 210 8850 f +353 1 210 8450 e [email protected] www.ibe-epilepsy.org International Bureau for Epilepsy Promoting and supporting the work of 122 member associations in 92 countries around the world EPILEPSY ACTION AUSTRALIA COUNTRY OF OPERATION Australia TYPE OF IBE MEMBER Associate member FOUNDING DATE 1952 INITIAL AFFILIATION TO IBE 1980’S TYPE OF ORGANISATION Individual membership RANGE OF OPERATION National VISION AND MISSION U consolidating links between health Vision: Confi dent living, despite seizures professionals and community service Mission: Epilepsy Action Australia undertakes providers to ensure a continuum of care research and advocacy, and delivers innovative, U launching public education and awareness high quality service across Australia to optimise programs to change attitudes to epilepsy life outcomes for people with epilepsy. An estimated 600,000 people in Australia will To ensure we did not compromise our national be diagnosed with epilepsy in their lifetime. services strategy EAA initiated a research effort Epilepsy Action Australia (EAA) is committed to to produce strong, independent data. After delivering equitable and consistent services to all establishing a key partnership with the George people in Australia, working to deliver higher, Institute for Global Health, providing seed national levels of support - particularly health funding and several years of collaboration, the education and interventions to facilitate self- Sydney Epilepsy Incidence Study to Measure management. Illness Consequences (SEISMIC) study was born. Delivering services nationwide for more than a SEISMIC, the fi rst major Australian incidence decade, EAA is the largest provider of specialist study of epilepsy is funded with grants from epilepsy services in the community. Australian Federal Government. SEISMIC will examine the incidence, psychosocial impact and OUR SERVICES INCLUDE: household economic burden of epilepsy in a U Information, support and education large and representative