LeagueNews - Cerebral Palsy League

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Brave Gold Coastteenage lifesaving heroA BRAVE Gold Coast teenagerovercame physical disabilities tobecome one of the most dedicatedsurf lifesavers on the popular GoldCoast destination - Mermaid Beach.Sixteen-year-old Ty Avent wasawarded a youth achievement awardat Robina in November after beingnominated for her dedication andcommitment as a surf lifesaver.Over the past two seasons, Ty – whohas overcome physical disabilities asa result of cerebral palsy – recordedmore than 136 hours of patrol time,which is more than any other JuniorSurf Lifesaver at the Mermaid BeachSurf Lifesaving Club.Cerebral Palsy League OccupationalTherapist, Jane Tranberg, who is avolunteer surf lifesaver and coach atMermaid Beach, nominated Ty for theGold Coast City Youth Awards.“Ty is an inspiration. She hasovercome many fears and obstaclesto become a competent anddedicated lifesaver,” Ms Tranbergsaid.“I have seen Ty stare adversity in theface to reach her goals.”“Her courageous journey to achieveher Bronze Medallion shows what astrong and determined person sheis,” she said.Ty began training at the MermaidBeach Surf Life Saving Club inNovember 2003 for her Surf RescueCertificate and has since completedher Radio Operators Certificate andBronze Medallion.She also won Club Cadet PatrolChampion in her first season andJunior Patrol Champion in her secondseason during 2004/2005.6CPLQ Library UpdateTHE League’s Library will beclosed for the Christmas breakbeginning Monday 19December 2005 and will reopenMonday 16 January 2006.The Library catalogue can beaccessed from the website:www.cplqld.org.auRequests can be emailed fromthe Library page on the Website.Above: The Hon. Stephen Robertson, Minister for Health (left) with first signatory on behalfof her child, Raylene Watling, her son Kai Watling, and Queensland Cerebral Palsy RegisterManager, Michael deLacy.QueenslandPalsy RegisterCerebralTHE Hon. Stephen Robertson,Minister for Health, and QueenslandCerebral Palsy Register Manager,Michael deLacy, officially launched thefirst state-wide register forQueenslanders with cerebral palsyduring Cerebral Palsy AwarenessWeek.At the same time, the firstQueensland child, three-year old KaiWatling, ‘signed’ on to the Register,with the help of his mother, Raylene.“As the most common physicaldisability affecting children, and withno known cure, the QueenslandCerebral Palsy Register will form partof a national register and is potentiallythe first step towards futureprevention,” Mr deLacy said.“There’s an estimated 7000Queenslanders with cerebral palsy,with another 100-120 people bornwith the disability each year,” MrdeLacy said.“The Register will collect informationon these people for use in identifyingcauses and preventions of thedisability.”“It will also enable us to assess thenumber and needs of Queenslanderswith cerebral palsy and better planfuture services,” he said.
The League urged all Queenslanderswith cerebral palsy to participate in theRegister, particularly parents onbehalf of children.“We need to research the populationof those with cerebral palsy to identifythe causes before we can startrecognising the preventions,” MrdeLacy said.“Those aged from five years withcerebral palsy are key to identifyingthe causes of the disability becausethis is the age when the condition canbe confirmed,” he said.Representing 20 per cent ofAustralia’s population, Queensland isforecast to make a huge contributionto the efforts already undertaken byother states in terms of identifying thecauses of cerebral palsy.“There are also factors inQueensland, such as the tropicalclimate and associated infections,which we think might make acontribution to identifying causes,” MrdeLacy said.Raylene Watling said there are manypossible theories as to why her son,Kai, was born with cerebral palsy.“Doctors thought Kai was born withcerebral palsy because I might havebeen pregnant with twins andmiscarried the twin,” Ms Watling said.“It could also be that Kai had a virusat three months old.“Nothing is definite and I hopeinitiatives such as the Register willmake in-roads into understanding andeventually preventing this disability,”she said.Since the launch in August, theLeague has received a goodresponse to the Register and is nownearing its one thousandthparticipant.The Register is owned and operatedby the Cerebral Palsy League ofQueensland and funded byQueensland Health.Queensland CerebralPalsy RegisterPh: 07 3358 8122Fax: 07 3358 8143cpregister@cplqld.org.auwww.qcpr.org.auFresh eyes look out forpeople with cerebralpalsyAFTER launching the QueenslandCerebral Palsy Register (QCPR)during Cerebral Palsy AwarenessWeek, the Cerebral Palsy Leagueannounced its appointment ofClinical Research Manager DrLeanne Johnston.Dr Johnston will work with QCPRstaff to initiate research practicesand outcomes of most benefit toLeague clients, families andcarers.With a background inphysiotherapy and a PHD inpostural muscle timing and upperlimb motion, Dr Johnston’s priorresearch has includedinvestigation of best practiceassessment and treatment forchildren with motor andorthopaedic dysfunction.League Manager ServiceDevelopment and Policy, GeoffRowe said her appointment to theposition was a step forward inenhancing the efficiency andaccuracy of service provision topeople with cerebral palsy.“Dr Johnston has a remarkablehistory and commitment toresearch and practice in paediatriccare to people with conditionssuch as cerebral palsy,” Mr Rowesaid.“Her primary role with the Leaguewill be to facilitate research at theLeague with state-wide andnational collaborators to informservice planning,” he said.Mr Rowe said this would beachieved by (a) identifying bestpractice methodology for existingservices; and (b) act as a trial todetermine practice options foremerging services.“The outcomes will help determinethe best approach to the servicedelivery and help the organisationallocate and lobby for funding,” hesaid.A team of senior professionals insocial work, occupational therapy,speech pathology andphysiotherapy, as well as stafffrom state and national cerebralpalsy registers - including theQCPR - will help with the research.Dr Johnston said she has alreadyoutlined research targets, includingquantitative and qualitative studiesinto links between physical ability andparticipation, as well as the accuracyand reliability of the ActivePAL formeasuring physical activity inchildren.“Research will be used to increaseunderstanding of the nature ofcerebral palsy and the needs ofclients,” Dr Johnston said.“Outcomes on efficiency,effectiveness and equity of servicedelivery can be used to supportbusiness cases for funding,” DrJohnston said.Dr Johnston has worked as anadvanced Paediatric Physiotherapistspecialising in complexdevelopmental disorders includingcongenital and acquired neurologicalconditions such as cerebral palsy,with gait laboratories andphysiotherapy departments.She has also submitted researchinternationally, and has presentedlocally on a range of issues, includingaddresses on neurodevelopmenttherapies and techniques - a popular,non-invasive technique in treatingmotor dysfunction in children withcerebral palsy.Mr Rowe said the League wasexcited about the implications of DrJohnston’s research over the comingyears, and is looking forward toresults from both its new ClinicalResearch Manager, and the QCPR.“We’re looking forward to the first fiveyearlyreport from the Register, aswell as the planned approach toresearch using its resources from DrJohnston,” Mr Rowe said.“The League continues to maintain itscommitment to its services and asClinical Research Manager, we areexpecting Dr Johnston will be able toprovide evidence based researchresults of best practices within arelatively short time frame,” he said.It is estimated there areapproximately 7000 people withcerebral palsy in QueenslandThe QCPR will help determine thisfigure and the requirements oftherapy, as well as investigate thecauses and possible preventions ofthe disability.7
Page 1 and 2: League NewsVOLUME 29 • NUMBER 3
Page 3 and 4: The Parents andGuardians ReportQuee
Page 5: Awards!CONGRATULATIONS to thefollow
Page 9 and 10: Facing Fears - FindingFutures9 th A
Page 11 and 12: League staffvolunteer too!MANY Leag
Page 13 and 14: Big sounds forcerebral palsyTHE Lea
Page 15 and 16: Ever Lost Your Car & House Keys?THO

LeagueNews - Cerebral Palsy League

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