Newsletter - SARDAA...2017/05/11 · Jonas, learned how to cope with the terrifying psychosis, the...
Transcript of Newsletter - SARDAA...2017/05/11 · Jonas, learned how to cope with the terrifying psychosis, the...
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Newsletter
May2017
MessageFromCEO
DearFriends,
Everyoneisa‘tweeter’aboutMentalHealthAwarenessMonth.Wouldn’tBrainHealthAwarenessbemoreappropriate?Thisisamonththatwecanallworktogethertoeducateandinfluenceothersaboutpsychosisandchangehowpeoplearetreated.Weareproudlybeinginterviewedtotalkaboutjustthatonvariousmediaoutletsthroughoutthemonth.
OurmostamazingphaseofourAwardWinningHearingVoicesofSupportInitiativeisjustafewdaysaway.PeoplearecomingfromacrossthecountrytoparticipateandexperiencetheHVoSExperientialinNewYorkCityMay16–20.Admissionisfree.Ihopewewillseemanyofyou,yourfriends,colleaguesandneighborsthere.Thisisanincredibleopportunitytochangeperspectivesaboutpeopleaffectedbypsychosis.
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PeoplearestilltalkingabouttheNewYorkCityTimesSquareFlashMobseeithereandshareitandhearingvoicesofsupport.org.
OnMay20thattheclosingofourHearingVoicesofSupportExperientialEvent,wewillproudlystandinsolidaritywiththeFamiliesforTreatmentofSeriousMentalIllness(TreatSMI),advocatesforthosesufferingfromseriousneuropsychiatricillnesses,astheymarchinWashingtonD.C.,Augusta,ME,Sacramento,CA,Springfield,IL,NewYork,NY,andSarasota,FLfortheirfirstannualmarchdemandingtherighttotreatmentbeforetragedy,ahospitalbedinsteadofjail,housinginsteadofhomelessness,andanendtothecriminalizationoftheseriouslypsychiatricallyill.
Warmestregards,LindaStalters,MSNCEOSchizophreniaAndRelatedDisordersAllianceofAmerica
LimitedVolunteeropportunitiesremainopen.PleasecontactAngel.white@sardaa.orgtovolunteerattheExperientialEvent.
HVoSTimesSquareFlashMobVideoTestimonial:
IsharedtheNYCTimesSquarevideowithmyson'sfamily,priortoourhavingbrunchtogetheronSunday,ashewasexpressingconcern,issueswithhissister'sbehavior.FromhispositiveresponsetothevideoIthinkithelpedhim,soIwasgratefulforthehelp.Thewholeofsocietyneedsit...enterSARDAA:)Goodday...Mary
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MessagefromFFS,Familyand
Friends,Coordinator
ThisMaywecelebrateMentalHealthMonth,alongwithSchizophreniaAwarenessWeekinthethirdweek.“EmbraceHope”ingoldlettersemblazonedoveramulticoloredheart,outlinedinwhite.YoumayhaveseenthisasPenzey's
logo.ItimmediatelyreachedouttomewhenIfirstsawit,givenmyoptimisticnatureandalwaysinsearchoflife'spromises.Thisservesasastrongmessagewemoveforwardwith.ImprovedlivesforpersonsdiagnosedwithSchizophreniaandrelateddisordershasadvancedsincetheearly80s,regardingwhichIcanrelateasafamilymember.Communitysupportthenwasminimalforthosediagnosed,possiblyorganizedonaweeklymeetingbasiswithfewornopermanentsitesfordailyengagingwiththeirpeers.Todaysuchgatheringplacesexistinmanycommunities,manyofwhichhavedevelopedastheresultofsignificantmemberinput.Peersupportismonumentalinpromotingrecoveryforthoseseekingtohelpthemselves.Anothersourceofhopeliesinongoingresearchwhichgivespromiseofearlyinterventionandimprovedtreatments.Ongoingeffortbyindividualsandorganizationshelptohighlighttheproblemofstigmawithinsocietyandtoincreasepeople'sunderstandingandcompassionofthosesochallenged.
Ibelievetheimprovementthusfarliesintheresilienceandstrengthofthoseaffected.TheywholivewithadiagnosisareamongthestrongestpeopleIhavebeenprivilegedtomeet.Thislikelywasunderstood,andlived,byHelenKellerwhostated“Charactercannotbedevelopedineaseandquiteonlythroughexperienceoftrialandsufferingcanthesoulbestrengthened,ambitioninspiredandsuccessachieved”.
WithHeart,MaryRoss
Editorial FromAnonymous:IcryeverytimeIreadthisnewsletter.Someoneouttheresomewhereunderstands.
Mylovedoneishighlyfunctional,forwhichIamforeverthankful.Peoplewhodon'tknowabouthisconditionoftenthinkhe'sjustawkwardandshy.However,IoftenfeelthatIcannotreachoutforsupportforfearof"outing"him,especiallyasheisfinishingcollegeandlookingforajob.
Iknowyouwillunderstandhowheartfeltmy"Thankyou"is.
Now,thename-game.WhileKrapelinandBleularbothrecognizedtheconditionas"something,"neitherofthemwereonquitetherighttrack.Isaylookmorecontemporary.I'vereadthatamalformedchromosomeispresentinover90%ofpeopleonthespectrum.Who
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discoveredthat?WhomadethegeneticconnectionthatEmoryisstudying?
FromtheDeskofJohnP.“HappinessSeries”
WealthandHappiness.Becomingrichwon'tbringyouabove-averagehappinessovertime.ThisistheconclusionstatedbyhappinessexpertProf.DavidMyers,aswellastherecentABCNewsspecialonhappinesshostedbyJohnStossel.Toillustratethispoint,Stosselinterviewedoncameranumerousmegabucklotterywinners,mostofwhomattestedthatthebigmoneydidn'tbringthemanythingclosetobighappiness,andoftencausedthemunexpectedproblemswithlovedones--leadingsometothetherapist'schair.Prof.Myersfurtherstatesthatastudyof49ofthewealthiestAmericans,aslistedbyForbesmagazine,foundthemgenerallytobeonlyslightlyhappierthantheaverageperson,andthat37percentofthisgroupreportedhappinesslevelslessthantheaverageperson's.READMORE
ThenewestversionoftheYouAreNotAloneBlueBooks
areavailablefororder.PleasecontactAngelat240-423-9432orangel.white@sardaa.orgto
order.
Wewelcomeyourcommentsandpersonalstoriestoincludeinthenewsletter.Pleasesubmityourmessageto:[email protected]
toSARDAAPOBox941222,Houston,TX77094-8222forconsiderationfornextmonth'snewsletter.
YourstorymightbeincludedinaSARDAAnewsletterandmightbepublishedinafutureeditionoftheSABlueBook.
PhoneSupportGroups
SAConferenceCallGroupsOnlyforindividualsdiagnosedSundays-7pmEasternTimeMondays-4pmEasternTimeThursdays-7pmEasternTimeFridays-7pmEasternTime
SpiritofSAConferenceCallForSALeadersandPotentialLeaders
FirstWednesdayofEachMonth-7pmEasternTime
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FamilyandFriendsSupportGroupNotforindividualsdiagnosedEveryTuesday-7pmEasternTime
Toll-freeCallsCall-ininformation(855)640-8271
EntryCode88286491#InternationalNumber(720)362-6499
***HOWTOSTARTANDGROWASAGROUP***
ByMargeryWakefieldWelcometoSA(SchizophrenicsAlliance)!IunderstandthatyouwanttostartanSAgroup,andthatisgreat!READMORE
HelpforpeoplewithSchizophreniaandRelated
Disorders.
Nowitiseasytorecorddetailsandspecificsaboutsymptoms,medication,moods,andmore.Choosewhatyouwanttotrack,andseealltheinformationyouneedtohelpyouoryourlovedonewhoislivingwithschizophreniaandrelateddisorders.
GettheSchizophreniaHealthStorylines™MobileAppToday!ThemobileappisFREEforallusersoniOSandAndroiddevices.Thereisalsoawebversionavailable,accessiblethroughthebrowserofanydesktopcomputerormobiledevice.
SARDAAandSelfCareCatalystshadtheopportunitytoworkwithKristySpeaks,anindividual,likeyou,livingwithschizophrenia.Kristyisamotherof3,whoaftergraduatingfromnursingschool,wasdiagnosedwithschizophrenia.
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Shesaidthatoutofalltheappsinthemarket,SchizophreniaHealthStorylinesself-careappwasthemostsupportiveasitallowshertotrackhersymptoms,moodsandjournalherthoughts.Inaddition,KristydesignedaPositiveAffirmationtoolthatlaunchedattheendofMarch!
ToshowyoursupportforKristy,wearereachingouttoyoutodownloadtheapptoday!Wehopethatyoubenefitthesamewayshedoes!
DownloadSchizophreniaHealthStorylinestoday!
InstagramaccountforHVoS-@hearingvoicesofsupport
Checkitouthere-https://www.instagram.com/hearingvoicesofsupport/
ICYMI:MurphyonC-SPAN:ContinuingtheFightforFamiliesinMentalHealthCrisisMarch24,2017OnWednesday,CongressmanMurphycontinuedhisfightforfamiliesinmentalhealthcrisisonC-SPAN'sWashingtonJournal.Incaseyoumissedit,checkoutthehighlightsandwatchthefullinterviewbelow.
WATCHNOW
Top6'MustSee'MomentsREADHERETolearnmoreabouttheHelpingFamiliesinMentalHealthCrisisAct,clickhere.
YouNeedToBeWatchingWhatIsHappeningInWashington:
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ABigShiftMaybeComingBYPETEEARLEY,5/2/17TexasSenatorJohnCornyn,theRepublicanmajoritywhipintheSenate,isputtingfederaldollarsbehindhisMentalHealthandSafeCommunitiesAct,thatwassignedintolawduringthefinaldaysoftheObamaadministration.BecauseofthehooplaaboutPennsylvaniaRepublicanRep.TimMurphy’sHelpingFamiliesinMentalHealthCrisisAct,Cornyn’slegislationdidn’tgetasmuchattentionasitdeserved.Gettingalawpassedandfundingitcanbetwoseparatechallenges.Cornynjustgot$2.5millionset-asideforsupportingadozennationalCrisisInterventionTeamtrainingcenterstohelpbetterpreparelawenforcementofficersfordealingwithindividualsinamentalhealthcrisis.READMORE
HowthiscouplestoppedmentalillnessfromtearingthemapartGiuliaandMarkLukachBy:DavidButowSanFrancisco-basedteacherMarkLukachwasmarriedtohiswifeGiuliaforjustthreeyearswhenshehadherfirstpsychoticepisodeatage27.Intheyearsthatfollowed,heandGiuliaandtheiryoungson,Jonas,learnedhowtocopewiththeterrifyingpsychosis,thecripplingdepression,recoveryandrelapsesthatcamealongwithGiulia’slate-onsetbipolardisorder.READMORE
AssistedOutpatientTreatmentinNewYorkState:TheCaseforMakingKendra'sLawPermanentStephenEide,UrbanPolicyHousingWelfareNYCAssistedoutpatienttreatment(AOT)isaprocedurebywhichseriouslymentallyillindividualsareplacedunderacourt-orderedtreatmentplanwhilecontinuingtoliveinthecommunity.NewYorkState’sversionofAOTisknownas“Kendra’sLaw,”namedafterKendraWebdale,aNewYorkCityresidentpushedtoherdeathinfrontofasubwaytrainin1999byamanwithuntreatedschizophrenia.
Kendra’sLawwasenactedonatrialbasisandhasbeentemporarilyreauthorizedtwice.Itisupforreauthorizationagainduringthecurrentlegislationsession.Basedonexperienceandextensiveresearch,thestategovernmentshouldmakethelawpermanent.READMORE
EnhancingPatientEngagementEffortsAcrosstheFDA
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TheFDAissolicitinginputonongoingeffortstoenhancemechanismsforpatientengagementattheAgency.Inthistradition,FDAintendstoenhancefuturepatientengagementbyprovidingamoretransparent,accessible,androbustexperienceforpatientcommunities.Toachievethesegoals,FDAisconsideringestablishinganewOfficeofPatientAffairs.ThisconceptwasdirectlyinformedbythepublicfeedbacksolicitedthroughthepriorpublicdocketregardingFDA'sstakeholderengagementresponsibilitiesoutlinedbytheFDASafetyandInnovationAct.ThepurposeofthisnoticeistooutlineFDA'sproposalforthefutureofpatientengagementattheAgencysothattheperspectivesofpatientcommunitiescanbebettercaptured.CommentsonthisproposalareacceptedthroughJune12,2017.READMORE
EstrogenAltersMemoryCircuitFunctioninWomenwithGeneVariant;Hormone-GeneInteractionMayUnderlieSex/IndividualDifferencesinMentalDisordersShau-MingWei,Ph.D.,NIMHSectiononIntegrativeNeuroimagingFluctuationsinestrogencantriggeratypicalfunctioninginakeybrainmemorycircuitinwomenwithacommonversionofagene,NationalInstituteofMentalHealth(NIMH)scientistshavediscovered.Brainscansrevealedalteredcircuitactivitylinkedtochangesinthesexhormoneinwomenwiththegenevariantwhiletheyperformedaworkingmemorytask.Thefindingsmayhelptoexplainindividualdifferencesinmenstrualcycleandreproductive-relatedmentaldisorderslinkedtofluctuationsinthehormone.Theymayalsoshedlightonmechanismsunderlyingsex-relateddifferencesinonset,severity,andcourseofmoodandanxietydisordersandschizophrenia.Thegene-by-hormoneinteraction’seffectoncircuitfunctionwasfoundonlywithoneoftwoversionsofthegenethatoccursinaboutafourthofwhitewomen.READMORE
CollegeStudentsatIncreasedRiskforSmokingMarijuanaNationalInstituteonDrugAbuse(NIDA)Ananalysisofnationalsurveydataindicatesthatstudentsattendingcollegeareatasignificantlyhigherriskofbeginningtousemarijuanathanthosenotenrolledincollege,underscoringtheneedforimprovedpreventionefforts.Theresearch,conductedbyscientistsattheUniversityofMichigan,wasfundedbytheNationalInstituteonDrugAbuse(NIDA).READMORE
RequestforInformation:InclusioninClinicalResearch
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AcrosstheLifespanNationalInstitutesofHealth(NIH)Inresponsetoscientificneedandacongressionalmandateinthe21stCenturyCuresAct(P.L.114-255),theNIHisconveningaworkshopofexpertsontheappropriateinclusionofpediatricandolderpopulationsinresearchstudiesinvolvinghumansubjectsandisseekinginputfromthewiderscientificcommunityandthepublicconcerninginclusioninresearch.TheNIHisinterestedinhearingfromthepubliconanumberoftopics,includingbeststudydesignsthatensuretheinclusionofparticipantsfromabroadrangeofages,sex/gender,andrace/ethnicityinclinicaltrialsorclinicalstudies;potentialethicalchallengeswhenincludingthoseindividualsunder18yearsofage,orfrailorcognitivelyimpairedolderadultsintrials;strategiestoexpandcurrentsuccessfulpracticesforinclusionofthesepopulations;andpotentialbarrierstoandtheopportunitiesforinclusionofpediatricandolderpopulationsinclinicalstudies.ResponseswillbeaccepteduntilJune30,2017.READMORE
HandgunLegislationandChangesinStatewideOverallSuicideRatesMichaelD.Anestis,PhD;JoyeC.Anestis,PhD;SarahE.Butterworth,BSAmJPublicHealth.2017;107(4):579-581FirearmsaccountforapproximatelyhalfofallsuicidedeathsintheUnitedStates.Astrongliteraturebasehasindicatedanassociationbetweenfirearmownershipandsuicide,evenafteraccountingforawiderangeofclinicallyrelevantvariables.Studiesalsohaveidentifiedsafefirearmstorageasanimportantconsideration.READMORE
Webinar:RelationshipsMatter!Motherhood:WhatItMeansforWomen’sRecoveryTuesday,May9,2017,2:00–3:30P.M.EST(1:00CST,12:00MST,11:00PST)Speakers:VivianBrown,Ph.D.,IlianaRiveraOjeda,CADA,LACD-1Moderator:ShannonTaitt,M.P.A.Learnwhatprofessionalsneedtoknowabouttheroleofrelationshipsinthelivesofwomenwithmentalhealthandsubstanceuseissues.RelationshipsMatter!isawebinarseriesonwomen'sbehavioralhealththatexplorestheroleofrelationshipsinthelivesofwomenexperiencingmentalhealthandsubstanceuseissues.RelationshipsMatter!showcasestherolethatrelationshipsplayandoffersconcretestrategiestohelpwomenandgirlsunderstand,develop,mend,andmaintainhealthyrelationships.Thematerialpresentedaimstoimprovebehavioralhealthservicesbypreparingtheworkforcetobetterunderstandthepitfalls,promise,andpowerofrelationshipsinwomenandgirls’mentalhealthandsubstanceuseservices.SAMHSAcreatedtheRelationshipsMatter!seriesto:
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Helppractitionerswhoservewomenwithbehavioralhealthproblemsunderstandandaddresstheimpactsthatrelationshipshaveonwomen'streatmentandrecoveryPresentrelationship-specificinterventionsandapproachesthatworkwithwomenOfferpracticalhands-ontoolsthatawidevarietyofpractitionersmayusetosupportwomen’srecovery.
READMORE
DonatetoSARDAA
BrainCampaign:TakethePledge
IwillchangemylanguagefromBehavioralorMentaldisordertoBraindisorder.Iwilleducateotherstochangetheirlanguagefrommentalillnessestobrainillness.Iwillnotusestigmatizing,discriminatoryorderogatorylanguagerelatedtobraindisorders.Iwillencouragemypeers,familymembers,andcolleaguestoadvocatewhentheyseediscriminatorylanguageorpracticesinthemediaorinpublic.Iwilladvocatethatpeoplewithbraindisordershaveequalandcomprehensivehealthcare.Iwilltreatallpeoplewithbraindisorderswithrespectandcompassion.
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PleasetakeamomenttofindouthowyoucanhelpsupportSARDAA,
notonlytodaybuteveryday-atnoextracosttoyou!!
WhenyoudoyourshoppingatAmazonSmile,Amazondonates0.5%ofthepurchasepricetoSchizophreniaAndRelatedDisordersAllianceOfAmerica.
IT'SSOSIMPLE:justbookmarkthislinkhttp://smile.amazon.com/ch/33-1213657,startshoppingandsupportuseverytimeyoushop.
TexasandLouisianaFriends:
Re-EnrollYourKrogerPlusCards
YoucansupportSARDAAwithoutspendingapenny!Register
SchizophreniaandRelatedDisordersonyourKrogerPlusCardandtheywilldonateapercentagetoSARDAAeachtimeyouuseyour
card.
Pleaseregisteronlineatwww.krogercommunityrewards.com
Linkto:SchizophreniaandRelatedDisorders–KrogerPlusCard90425
HelpChangeLives--DonateNow
Thankyoutothosewhoalreadymadeadonation-Everycontributionmakesadifference.
Sincerely,AngelWhite,Editor
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