newsletter - sardaa...2017/05/11  · jonas, learned how to cope with the terrifying psychosis, the...

Newsletter

May2017

MessageFromCEO

DearFriends,

Everyoneisa‘tweeter’aboutMentalHealthAwarenessMonth.Wouldn’tBrainHealthAwarenessbemoreappropriate?Thisisamonththatwecanallworktogethertoeducateandinfluenceothersaboutpsychosisandchangehowpeoplearetreated.Weareproudlybeinginterviewedtotalkaboutjustthatonvariousmediaoutletsthroughoutthemonth.

OurmostamazingphaseofourAwardWinningHearingVoicesofSupportInitiativeisjustafewdaysaway.PeoplearecomingfromacrossthecountrytoparticipateandexperiencetheHVoSExperientialinNewYorkCityMay16–20.Admissionisfree.Ihopewewillseemanyofyou,yourfriends,colleaguesandneighborsthere.Thisisanincredibleopportunitytochangeperspectivesaboutpeopleaffectedbypsychosis.

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

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

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:info@sardaa.orgormail

toSARDAAPOBox941222,Houston,TX77094-8222forconsiderationfornextmonth'snewsletter.

YourstorymightbeincludedinaSARDAAnewsletterandmightbepublishedinafutureeditionoftheSABlueBook.

PhoneSupportGroups

SAConferenceCallGroupsOnlyforindividualsdiagnosedSundays-7pmEasternTimeMondays-4pmEasternTimeThursdays-7pmEasternTimeFridays-7pmEasternTime

SpiritofSAConferenceCallForSALeadersandPotentialLeaders

FirstWednesdayofEachMonth-7pmEasternTime

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.

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:

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

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

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:

Helppractitionerswhoservewomenwithbehavioralhealthproblemsunderstandandaddresstheimpactsthatrelationshipshaveonwomen'streatmentandrecoveryPresentrelationship-specificinterventionsandapproachesthatworkwithwomenOfferpracticalhands-ontoolsthatawidevarietyofpractitionersmayusetosupportwomen’srecovery.

READMORE

DonatetoSARDAA

BrainCampaign:TakethePledge

IwillchangemylanguagefromBehavioralorMentaldisordertoBraindisorder.Iwilleducateotherstochangetheirlanguagefrommentalillnessestobrainillness.Iwillnotusestigmatizing,discriminatoryorderogatorylanguagerelatedtobraindisorders.Iwillencouragemypeers,familymembers,andcolleaguestoadvocatewhentheyseediscriminatorylanguageorpracticesinthemediaorinpublic.Iwilladvocatethatpeoplewithbraindisordershaveequalandcomprehensivehealthcare.Iwilltreatallpeoplewithbraindisorderswithrespectandcompassion.

PleasetakeamomenttofindouthowyoucanhelpsupportSARDAA,

notonlytodaybuteveryday-atnoextracosttoyou!!

WhenyoudoyourshoppingatAmazonSmile,Amazondonates0.5%ofthepurchasepricetoSchizophreniaAndRelatedDisordersAllianceOfAmerica.

IT'SSOSIMPLE:justbookmarkthislinkhttp://smile.amazon.com/ch/33-1213657,startshoppingandsupportuseverytimeyoushop.

TexasandLouisianaFriends:

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YoucansupportSARDAAwithoutspendingapenny!Register

SchizophreniaandRelatedDisordersonyourKrogerPlusCardandtheywilldonateapercentagetoSARDAAeachtimeyouuseyour

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Pleaseregisteronlineatwww.krogercommunityrewards.com

Linkto:SchizophreniaandRelatedDisorders–KrogerPlusCard90425

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Thankyoutothosewhoalreadymadeadonation-Everycontributionmakesadifference.

Sincerely,AngelWhite,Editor