MDIA3002 Emily King Major Assignment

7/28/2019 MDIA3002 Emily King Major Assignment

http://slidepdf.com/reader/full/mdia3002-emily-king-major-assignment 1/13

MDIA3002:MultiplatformJournalismASSESSMENTTASKS–SEMESTER1,2013

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MDIA3002S12013

Assessment2:MAJORASSIGNMENT:OriginalProduction

TARGETAUDIENCEANALYSIS:

FullName: EmilyRebeccaKing

SID: Z3375720

Topic: MotorNeuroneDisease

NewsOrganisationandSection

writtenfor:

TheGlobalMail,DrugMoney

Oneoftheassessmentcriteriaforthistaskasksyoutoidentifythenewsorganisationandtarget

audiencethatyourstoryhasbeenwritten/producedfor.Usethespacebelowtoexplaintheangleyou

havechosenforyourstoryandhowthisalignswiththeideals/beliefs/valuesbothofthatorganisation

anditstargetaudience.AlsostateWHATsocialmediaaspectsyouwouldaddintothisstorypackage

thatbestfitwiththepromotionandwiderdistributionofthestoryforthisparticularaudience.

IchoseTheGlobalMail fortworeasons:one,IhavebeenworkingasaninterntheresinceFebruary;

fromthisIhavenotonlypickedupaknowledgeoftheirvaluesandstyles,butIhavebeenworking

closelywiththejournalistsresponsiblefortheircurrentfeaturecalled‘DrugMoney’.Astorythathas

beenshapedtothisparticularfeatureisgivenaddednewsworthinessalongsidethevaluesoftimeliness,

consonance,proximity,novelty,impact,personalisationandnegativity(BednarekandCaple2012).The

GlobalMaildefinestheiraudienceas“independentminds”andit’sknownthattheirreadersare,ina

sense,ABtypereaders–mosthaveadegreeandholdprofessionalormanagerialpositions,theyare

affluentandtheyareyoung,estimatedtobebetween25-35yearsofage.

ItisforthesereasonsthatIchoseananglethatfocusedonthemoneyandfundingaspectofthis

disease,whichcapitalisesonthenoveltyandtimelinessoftheMillionMetresforMNDbikeride.While

theimpactofMNDisarguablysmall,thenegativityarisesfromthefactthatanyone’slifeisnotas

valuedasmuchbystategovernments,shownprimarilythroughthepersonalisationofSydOrchardand

hisfamilyinmycopy.ThisfitsinwiththeGlobalMail’spreferenceforwhatcouldbecalled

“championingtheunderdog.”Since TheGlobalMail isaweb-based,IfeelIamjustifiedincomparing

NSWtoanotherstate,foralthoughtheirofficeisSydneybased, TheGlobalMail’sreadersare,bytheir

choiceinpublication,concernedwithmattersthatextendacrossAustraliaandarenothyper-localised.

Muchthoughtwasputintothevisualaspectsofthisstory. TheGlobalMail ispassionatefordata-visualisation,withtheirdrugMoneydatavisrecentlyannouncedasafinalistinthe2013GlobalEditors

NetworkDataJournalismAward.Althoughthiswasnotnecessarilypartoftheassessmentcriteria,for

thisstorytobefitforpublicationIhavechosentoincludeaninfo-graphicsoastofitinwiththestyle

andvaluesoftheGlobalMail.Kolodzy(2013)stressedthat“reporterswhowanttouseeverystory

tellingdeviceavailableneedtothinkofgraphicsaspartoftheirjournalistictoolbox”(p97).However,

perhapsmoreimportantly,myimagegalleryfeaturesimagesthathavebothaestheticandnewsvalue.

OneimageIspecificallycomposedtoimitateMikeBower’sstylefortherestoftheDrugMoneyfeature,

thatbeingofpillsbacklitonalight-box.Someimagesoverlappedthestory,butshowedwhatwould



MDIA3002:MultiplatformJournalismASSESSMENTTASKS–SEMESTER1,2013

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MDIA3002S12013

havebeenpoorlyperceivedintext,forexample,thetandembicyclecanreallyonlybeexplainedina

photo.

Inordertopromoteanddistributethisstory,apartfromthetypicaltweetsandFacebookpostswhich

linkbacktothestory,Ibelieveaskingrelevantstakeholders,suchasMNDandMetofeaturethisstory

ontheirFacebookpageandwebsitewouldaidingivingthisstorytopeoplewhowouldperhapsbemost

interested.AlinktothedocumentaryonScottSullivanandDrIanDaviesbyLegacyfilmscouldalsobe

linkedtointhestory.

References:

Bednarek, M and Caple, H 2012, News Discourse, Continuum, London. Chapter Three: NewsValues, pp.39-83

Kolodzy, J 2013, Practising Convergence Journalism: An Introduction to Cross-Media

Storytelling, Routledge, London/New York. CHAPTER SEVEN: Capturing context and tone:

Using words, pictures and sound, pp.95-115





HEAD:PayingWithLives:MotorNeuroneDisease

ByEmilyKing

INTRO:

Onein15,000AustraliansislivingwithMotorNeuroneDisease,adiseasethatleavessufferersunabletowalk,talkorbreathe.Butgovernmentfundinggrantssufferersjust$133ayear.EMILYKINGinvestigates.

AT1:37PMonMay18,twomenonauniquetandembicyclereachthefinishlineoftheir16day,million

metreridefromBrisbane,surroundedbyaconvoyofbicycles,apoliceescortandhundredsofsupporters.

Onepeddleswithhisfeetandtheotherwithhishands.

Thisiswhatayoungmother,walkingalongtheseafrontofManlyonebrightautumnday,findsasacrowd

blocksherpath.She,likesomanyAustralians,hasneverheardofMotorNeuroneDisease(MND)before.

Thesightisenoughtoconvincethewomantodonatesomeofhersparechange.Sheskipsherusualafternooncoffee,confidentintheknowledgethatshehashelpedthecauseofMNDandMe.

Whatshedoesn'tknowisthatforsomewithMNDinAustralia,thegovernmentfundingonlysuppliesas

littleas$133perperson-thisyoungmothercouldmatchthatinlessthanayearifshegaveupevery

Saturdaycoffee.ThisisthegapthathasleftstateandfederalMNDassociationsrelyingonfundraisingsuch

astheMillionMetresforMNDandMebikeride.

Oneoftheriders,DrIanDavies,35,isadeadmanwalkingwithabrace.Thehaematologyregistrarfrom

thePeterMacCallumInstituteinMelbournediagnosedhimselfwithMNDalmosttwoyearsago.Heknows

fromtreatingMNDpatientsthatthecostofthisdiseaseonpeopleandtheirfamiliesisthousandsof

dollarsperpatientandsome600livesnationwideayear.

“Itcanbequiteconfrontingwhenyou’reattheearlystagesandyoumeetsomeoneatthelaterstage

becausetheycan’ttalkandtheyslurtheirwords,theycouldbedribblingandthey’reparalysed,”sayshis

co-rider,colleagueandfriendScottSullivan.AthisspeechatManly,Scott’swordsarealreadyspokenwith

aslightlisp.“Sothatcanbeconfrontingknowingthatit’sgoingtobeyou.”

APriceWaterhouseCooperreportinlate2011foundthatAustraliarankedlastoutof27developed

countriesforqualityoflifeforpeoplewithdisabilities,sparkingpassionsfortheNationalDisability

InsuranceScheme(NDIS)tohelppeoplesuchasthosewithMND.

TheGlobalMail hastalkedwiththefamiliesofthosewhohavelivedanddiedwithMNDtoseehow

fundingandsupportisbeinggiven.Wefoundstoryafterstoryofpeoplewhoareangryandhelplesswhen

facingwhatisacripplingdisease.

“You’reactuallythrownoutintoaworldthatyouknownothingabout,”saysCherieOrchard,amother-of-

threewhosehusbandSyddiedlatelastyearfromMND.“Youdon’tknowanythingaboutpalliativecare,

youdon’tknowanythingaboutanything,really,andbecauseit’ssuchaquirkydisease,thesymptomsare

alldifferent.”

Herdaughter,EmilyMaher,36,agrees.“IwillbadmouthMotorNeuroneQueenslandtillthedayIdie,

causetheydidnothing,”Emilysays.MNDQLDisanot-forprofitorganisationthathandlessome$40,000in

governmentfundingandalmost10timesasmuchindonations.



Thismoneygoestowardsprovidingcare,informationandadvocacyandanequipmentlibrarytospare

patientsfromforkingoutmoneyforequipment.Wheelchairs,asanexample,cancostanywherefrom

$900to$13,000butareonlyusedforafewmonths.

MNDNSWisabitbetteroff,receiving$485,000thispastyear,covering484membersfromNSW,ACT,NT

andeventheGoldCoast.NSWhasanequipmentlibraryof1700piecesestimatedtobeworth$1.5million.

Some281oftheirmembershave1249piecesonloan.Whenasked,representativeAnnaThompsonfrom

MNDQLDrefusedtogiveanumbertoherorganisation’slibrary.

FamiliesandfriendsofthosewithMNDarefootingthebillinallstatesthroughdonations.

GrahamOpieadmitsthattheservicesavailableinNSWandVictoriaaresignificantlybetterthanother

states.AMNDQLDrepresentativeestimatedthatQueenslandservicesareaboutadecadebehind.

Notonlydotheyreceiveabout10%ofthegovernmentfunding,buttheyalsoonlyreceiveabout10%of

theamountindonations.

Inthelastyear,peopleinNSWhavedonatedover$1.5milliontoMNDNSW,andMNDResearchAustraliahadabout$2million.“Ithinkit’sourgoodservicethatthenmeanspeopledonatemoney,”saysGina

Svolos,FamilySupportManageratMNDNSWforthepastsixyears.

ThreeweeksbeforeSyd’sdeath,histhreedaughtersheldafundraisingdinnerfor160atthelocalgolfclub.

“Weraised$10,000whichwasreallygood,”saysEmilyMaher,“andScottSullivancameout,whichhe

shouldn’thave,heshouldn’thavedriven.”

ScottSullivan,40,explainedhowhisdiagnosisinOctober2010ledtohimstartingtheMNDandMe

foundationandridingwithDrDavies.“WhenIresearchedMNDQLD,theserviceswerereallyinavery

sorrystate,sotherewasanopportunitytheretoactuallydosomethingtangible.”

“Heisincredible,thatman,”saysEmilyMaher.“Heneedsamedalforthatthey’redoing.”

ScottSullivanandDrDavieshadagoalof$250,000inlessthanamonthfortheirMillionMetresforMND

bikeride.MNDQueenslandonlygetstwiceasmuchinayear.

“MNDhasthegreatestabilitytoscarepeopleintodoingsomething,”saysDrDavies.

“It’sahideousdiseaseonceyouactuallyfindoutaboutit,“saysGrahamOpie,CEOofMotorNeurone

DiseaseNewSouthWales(MNDNSW).

“There’snoremission,there’snochemotherapyorradiotherapy,there’snothingyoucando,youcan’tdo

anoperation.Youwilldiefromit.You’llprobablydiebetweenthreeandfiveyears.”

DrBarrieMorley,aretiredneurologistwhoworkedatMonashMedicalCentreforover25years,wasnot

onlywasontheboardfortheBrainFoundationbutwitnessedhisownbrother-in-lawDaviddiefrom

MND.

DrMorleyexplainshowthediseasefirststopsmotorneurones,thenervecellsthatcontrolmuscles,from

communicatingwiththebrainstemandspine.PeoplewithMNDlosesuffertwitching,spasmsand

progressivelylosetheabilitytocontroltheirmuscles.Onedaytheycan'twalkortype.Thentheylosethe

abilitytotalk.Eventuallytheydiewhentheirlungsnolongerwork.



“Onceyoulosetheabilitytomoveyourarmsandspeak,yourqualityoflifereallygoesdownhill

physically,”saysScottSullivan,founderofMNDandMe.“Mentally,you’re100%active,butnotableto

communicatewithfellowpeoplewhichisfrustrating.Ithinkpeopledogiveuponcetheylosetheirvoice.”

OneofthechallengesfororganisationsforpeoplewithMNDisthatitissounknown.Thismeansthatboth

familiesarefacedwithamazeofservicesandorganisationsmustadvocateontheirbehalf.

“You’veonlygotthisshorttimewiththepersonthatyoulove,andyouspendallthattime,andI’mnotexaggerating,youspendallthattimeonthephone,lookingforhelp,”saysCherieOrchard.

“Werelyonthesystem,theDepartmentofHealthandprivatehealthcare,todowhatthey’resupposedto

bedoing,”explainsGrahamOpie.Unlikeotherorganisations,suchasthoseforbetter-knowndiseasessuch

ascancerandhearthealth,MNDassociationstrytoavoidoverlappingtheirserviceswiththoseprovided

byothers.InNSW,thesolutiontothisiseightregionaladvisorswhotravelthestateeducatinghealth

practitioners,patientsandfamiliesandprovidingsupport.Oneoftheseregionaladvisorshasextended

theirservicetotheGoldCoast,becauseinQueensland,therearenone.

“There’snobooklet,there’snoone

doctorwhowilltellyouwhattodo,”saysEmilyMaher.“AGP’snottrainedinMND,sotheytrytopassyouofftotheneurologist,buthe’saspecialist,sohedoesn’tactually

wanttoseeyouonceaweek.”

OneofScottSullivan’smajorgoalsistoprovidethe300peopleinMNDinhisstatewiththeseregional

advisors,orwhathecallsliaisonofficers.“Whatweneedisfiveorsixpeoplewhoaretrainedand

educatedandhavetheknowledgeandexperiencetoworkcloselywiththefamilies,sitthemdownand

say,‘lookifyouneedahospitalbedthesearetheavenuesyoucangothrough,herearetheforms,I’llfill

themoutforyou’.”

Oneofthechallengingaspectsofthecause,explainsScottisthat“it’snotreallyaunitedfront.For

examplebreastcancerthere’ssuchapositivevibe,allthesesurvivors,allthesegreatstories,there’shope.

WhereaswithMND,youdon’thavethat.”

“IthinkwithMND,becausenoteverycaseisthesame,peoplecan’trelatetoeachother,”saysCherie

Orchard.

ScottSullivantoldTheGlobalMailhowoneofhisneighbourswasdiagnosedatthesametimeashimself.

“Hedidn’ttellasoul,notevenhisfamily,”saysScott.

Intheend,MNDsufferersareallunitedbyonething.MNDhasnocure.

JanetNashfromResearchatMNDAustralia,saysthatlastyear,$2million,allfromdonationsweregivenas

researchgrants.Grantapplicationsmustbereviewedbyapanelofexpertsaspertheprinciplesofthe

AustralianTaxOfficeforapprovedresearchinstitutes.

“Wealwayshavemanymanymoregrantapplicationsthanweareabletofund,“saysNash.“Thefirst

grantwasawardedIthinkin1989,ofabout$25,000andlastyearweawarded$2millioningrants.”

“It'sknownnowthatwe'vegotgoodmoneyforresearch,beingabletopersuadepeopletoskewtheir

researchtoMNDratherthanAlzheimer’sdiseaseorwhateverelsethatmighthavebeenchosentowork

on.”

TheBrainInstituteofQueenslandannouncedonMay26thatthefirstresearchcentredevotedtoMNDin

AustraliahasbeensetuponthegroundsofMacquarieUniversity.Alreadytheyhavefoundexciting



evidencefromzebrafish,whichareabletoregrownew,healthymotorneurones.Yetthosewhoknow

MNDarecautious.BothGrahamOpie,JanetNashandScottSullivanadmitthattreatmentisatbesta

decadeaway.ForScott,andother1,500AustralianslivingwithMNDtoday,itwillbetoolate.

“They’renevergoingtogetanybetter.It’saterminaldisease,”saysCherie.Unabletowaitforacure,

servicesforMNDpatientsfocusonqualityoflifeandpalliativecare.

“Istilldon’treallyknowwhatpalliativemeans,”saysCherie.“Iknowitmeansdying,butIdon’tknowwhatstageyou’reactuallyclassedaspalliative.Tome,andMNDpatientispalliativefromthetimethey’re

diagnosedbecausethey’redyingallthewaythrough.”

“Amajorroleofoursistokeeppeopleathomewheretheywanttobe,notdyinginahospitalorina

palliativecareservice,actuallyhavingalthesupporttheycantostayathome,”saysGrahamOpie.“Infact

thevastmajoritydothatandwehelpfacilitatethat.”

NewhopeforthosewithMNDhasarrivedintheformoftheNDIS,whichishopedtoputmoremoneyinto

thehandsofthosewithdisabilities,ratherthanorganisationshavingtorelyonfundraisinganddonations.

WhenaskedabouttheNDIS,theCEOofMNDNSWleansforward,eyesbright.“It’sfantastic,Ithinkwe

wereoneofthefirst5tosignon,”Opiesays.“Everyyear,forthelastfouryearswe’vewrittentoallour

membersaskingthemtowritetotheirlocalparliamentariantopromotetheNDISbecausethemoney

beingintheindividualshands,orthefamily’shandssotheycandeterminewhat’sbestforthem,wethink

isthebestwaytogo.”

WhenaskedabouttheNDIS,ScottSullivanshiftsbackinhisseat.“It’sastepintherightdirectionbut

bureaucracywillprobablymakeithard,”hesays.“Therewillbeforms,therewillbeprocesses,therewill

bewaitinglines.Soit’sapoolofmoneythatwillhelpbutweneedtomakesurethatpoolofmoneygoes

topeoplewhoneedanddoesn’tgetchewedupinprocessesandstaffing.”

GinaSvolosfromMNDNSWadmitsthattheNDISdoeshaveitsflaws,includingitseligibilitycriteria,which

shutsoutpatientsover65.ThehighestrateofMNDisforpeopleintheir50sand60s,meaningthatmany

sufferersareclassedasagedcarepatients.Thisonlyentitlesthemto16hoursofcareaweekcomparedto

almostdoubleforthoseonhigh-carepackages.

“Dyingpeoplemakepeoplenervous,”explainsDrDavies."Itliterallycomesdowntosheermoney.So,you

saythecancerwordandpeoplepourmoneyintoit.Yousay“MND”andunfortunately,becausewedon’t

livelongenough,there’snoincentivefordrugcompaniesorforthegovernmenttoputenoughmoneyin

becausetheburdenthatweultimatelyhaveonthehospitalsystemandhencethegovernment’sfinances

isverysmall."

EveryoneTheGlobalMail interviewwasconcernedthatthefundingandservicesprovidedbytheNDIS

wouldnotbegivenquicklyenoughtothosewithanaggressiveformofthedisease.Manyhavefound

themselvesplayingcatch-upwithsymptomsuntiltheyareinhospitalattheendoftheirdays.

“Iaskedoneofthesenurses,‘Iwanttoknowhowhe’sgoingtodie.Iwanttoknow,Iwanttobeprepared

forhowhe’sgoingtodie',“saysCherieOrchard.

“Hewasterrifiedhewasactuallygoingtochoketodeath,andtheysaid,‘ohnonononono,he’ll…’but

theyneveractuallycameoutandsaidthisishowhe’sgoingtodie.”

“Inthatlastweek,dadstartedcoughing,”recallsEmilyMaher,theirdaughter.



Shemimicsherfather’ssilentcoughing,bentoverasifretching.“Hehadnostrengthleftinhislungs.He

wascoughing,whichwasactuallyhimchokinganddying,andwedidn’tknow.Wethoughthewasjust

choking.”

“Eventuallymostpeopleasphyxiate,becausetheirdiaphragmcan’t…themusclesjustdon’twork,”says

GrahamOpie.

Intheward,everytimeSyd’soxygenlevelsdropped,“twentydifferentdoctorswouldcomein,andnurses,andwe’dbestandingthere,saying,‘he’sDNR[donotresuscitate],he’saDNR,he’saDNR’causetherewas

nosignupsaying‘donotresuscitate’,”saysEmilyMaher.

Shedescribestheeventas,“soincompetentit’snotfunny.Theywereallgettingreadytoresuscitatehim.

Andwe’resaying,‘no,no,he’snotforresuscitation,you’vegottostop’andpoordad,who’sblue,and

chokingandfullyawareofwhat’sgoingon…”

Lyn,whoprefersprivacyoverherhusbandGreg’sdeatheightyearsago,describesasimilarevent.

“Hewasunconsciousbuttheysay,youknow,‘whatdoyouwantustodo?’Idon’tknowwhethertheywereaskingmetotryandsavehimorwhy–hehatedhislife.That’ssomethingyoudon’tthinkof.You

don’tthinkyou’vegottomakeadecision.”

SydOrchard'sfamilyeventuallydecidedtotakehimhome.Hoursafterwaitingforanambulance,twoof

hisdaughtershadthetimetodrivehome,pickuptheirwheelchairvananddrivebacktopickhimup

beforetheambulanceevenarrived.Hediedtwodayslater.

ScottSullivanandDrDavieshugatthefinishlineatManlyonMay18thisyear.Scott’soncemuscular,

footy-playingshouldersfoldwastedandbirdlikeintotheembrace.Hethenturnstothecrowdandmakes

aspeech.Hisvoicequivers,andit’sunclearwhetherit’sfromexhaustion,emotionortheprogressionofhis

disease.Histhree-year-oldsonCharliehappilywavesastreamer,unawarethatthesemaybesomeofthe

lastwordsofhisfatherhewilleverhear.

“Iwassayingtooneofmygirlstheotherday,thatIdon’trememberthedayhesaidhislastwords,”says

Cherieofherhusband.





Motor Neurone Disease (MND) stops motor neurones, the nerve cells that control muscles, from

communicating with the brain stem and spine. People with MND lose suffer twitching, spasms and

progressively lose the ability to control their muscles

THE Motor Neurone Disease Association of NSW is located on the grounds of Old Gladesville Hospital

in Sydney

MND and Me was started by Scott Sullivan to help raise money for people with MND in Queensland,

where the f unding is a mere fifth of NSW’s



A crowd of hundreds including a documentary film crew and the media meet the MND and Me bike

ride at Manly on May 18, 2013

Dr Ian Davies thanks Scott’s family, including his children Abbie, 7 and Charlie, 3 “for letting me be

your daddy.” No family met Dr Davies at the finish line

Greenspeed in Melbourne designed a tandem bicycle that is one of a kind. It allows Scott Sullivan to

peddle with his feet and Dr Davies to peddle with his hands



”It can be quite confronting when you’re at the early stages and you meet someone at the later

stage,” says Scott Sullivan

Scott Sullivan, 40, was once a avid sportsman with a muscular physique. Dr Ian Davies and Scott

Sullivan hug at the finish line of the 16 day, million metre bike ride from Brisbane to Sydney

Dr Ian Davies has treated people with MND. He joined Scott Sullivan working for MND and Me after

seeing Scott on the television two weeks after Dr Davies was diagnosed



.

Donations and fundraising make up 80% of their funding to provide care and support for people with

MND

MDIA3002 Emily King Major Assignment

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