May 2008 - Epilepsy Australia

WELCOMEThe exciting development in this issue is the formationof the Parliamentary Friends of Epilepsy Group, to beconvened by Jill Hall MHR. The Group will be launched inCanberra on the 28th May.The Joint Epilepsy Council of Australia (JECA)lead by Jacinta Cummins and Russell Pollard spentmany months lobbying Members of Parliament togain support for JECA’s submission to governmenttitled: A National Strategy for Epilepsy. Coming from abackground in disability and rehabilitation, Jill Hall, theMember for Shortland in NSW, knew very well the manydisadvantages people with epilepsy experience, andwith a record for advocating for fairness and justice, putJECA’s concerns on notice to the House.With bipartisan support, the debate took place on the17th March, with each speaker commending Jill’s motionto the House. Extracts from their speeches can be readon pages 6 and 7.Seizures force many to turn their lives around andrechart their future course. Martin Raffaele had to do justthat. In redefining himself, epilepsy is now the focus of hislife as he seeks way to help others.A theme running through this issue is about ‘makinga difference’ and whether it occurs in the halls of poweror in those communities living in rural or remote areas ofAustralia, whether it is working in research laboratoriesor as a volunteer at outdoor adventure camps, orinvestigating the social impact epilepsy has on youngpeople, you will read about those who believe making adifference is possible.CONTENTS3Special featureJill Hall MHRadvocates for fairnessand justice for people withepilepsy8 Allison Clarkeepilepsy & young people8Michael KendrickService models: doesone size fit all?14 Martin Raffaelestepping fromdarkness into lightEditorDenise ChapmanContributing EditorsRussell Pollard, Dr Frank Vajda,Fiona Tito, Robert Cole.ContributorsJohn Berrill, Jim Chambliss,Allison Clarke, Mark Francis,Michael Kendrick, Dr StevenPetrou, Jaya Pinikahana, MartinRaffaele, Lesley Ridgeway, ClareThorne, Christine Walker,Prof John Willoughby.PhotographyDreamstime.comPrint Pegasus Print GroupThe Epilepsy Report is publishedby Epilepsy Australia Ltd818 Burke RoadCamberwell VIC 3124 AustraliaTel: 03 9805 9111epilepsy@epilepsyaustralia.netwww.epilepsyaustralia.netViews expressed and informationincluded herein do not necessarilyreflect official policies of EpilepsyAustralia. Articles coveringmedical aspects are not intendedto replace competent medical, orother health professional advice.All content is copyright and maynot be reproduced without priorpermission. Contributions arewelcome. The Editor reserves theright to edit content for reasons ofspace or clarity.Epilepsy Australia Affiliates:Epilepsy ACTEpilepsy Queensland IncEpilepsy Association of SA/NTEpilepsy Association of TasmaniaEpilepsy Foundation of VictoriaEpilepsy Association of WA1300 852 853EditorNational Epilepsy Helpline11 Jaya PinikahanaChristine Walkerepilepsy & social stigmaPLUS17Sparks of Creativityepilepsy: a windowto experience &creativityChildhood epilepsy research 10Epilepsy research at Flinders 13Research Participant Register 16ACT fundraising kicks goal 18Epilepsy SA/NT on the move 19E-Camping in Tassie 22Confessions of a volunteer 24Remote & rural communities 25New partnership: miVitals 26An interview with Little Poss 27Power of Attorney: future planning 28Letters to the editor 30face2face with Jacinta Cummins 312 THE EPILEPSY REPORT MAY 2008