Newsletter - SARDAA€¦ · newsletter. Please submit your message to: [email protected] or mail to...
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Newsletter August 2017 Message from SARDAA, CEO Dear Friends, Summer is definitely here and more than the weather has heated up. SARDAA is focusing on what will truly make a difference in the treatment for people affected by serious neuro- psychiatric illnesses. Al Guida is guiding our efforts to move schizophrenia into the appropriate classification as a neurological disorder. This move will inform everyone that schizophrenia spectrum disorders are not elected any more than Alzheimer's or Parkinson's diseases, therefore people require treatment not incarceration or homelessness. We are planning a 2018 scientific conference in Houston that will focus on the scientific evidence of schizophrenia spectrum disorders and treatments available as well as a Schizophrenia Alliance and
Transcript of Newsletter - SARDAA€¦ · newsletter. Please submit your message to: [email protected] or mail to...
Newsletter
August2017
MessagefromSARDAA,CEO
DearFriends,
Summerisdefinitelyhereandmorethantheweatherhasheatedup.SARDAAisfocusingonwhatwilltrulymakeadifferenceinthetreatmentforpeopleaffectedbyseriousneuro-psychiatricillnesses.AlGuidaisguidingoureffortstomoveschizophreniaintotheappropriateclassificationasaneurological
disorder.ThismovewillinformeveryonethatschizophreniaspectrumdisordersarenotelectedanymorethanAlzheimer'sorParkinson'sdiseases,thereforepeoplerequiretreatmentnotincarcerationorhomelessness.
Weareplanninga2018scientificconferenceinHoustonthatwillfocusonthescientificevidenceofschizophreniaspectrumdisordersandtreatmentsavailableaswellasaSchizophreniaAllianceand
FamilyandFriendsSupportGroupsworkshop.
Thereissomuchtodoandinordertoaccomplishwhatisimportanttoyouandyourlovedone(s),weneedyourhelp.Fundingisrequiredforexpertstoresearchandguideus,traveltothelegislatorstorallysponsorsforwhatweneedtodoanddedicatedvolunteersareneededtoorganizeoureffortsandsupportourgroups.
WewelcomeFloraDavis,M.A,CFREtotheSARDAAteam.FloraisourDirectorofExternalAffairsandwillhelpmoveusforwardinoureffortstoimprovelivesaffectedbyschizophreniarelatedbraindisorders.Floraisanagentofchangedevelopmentexecutivewithmorethan20yearsofexperienceinplanning,directingandimplementingcomprehensivedevelopmentprogramsbasedonindustrybestpracticestandards.Knownforencouragingotherstoreachhigherandremainmotivatedtoachievegoals.Seenasacollaborativeservantleaderwiththeabilitytoworkwithdiversegroupsofpeople,remaincalmunderstressfulsituations,problemsolvechallengingsituations,monitoranddriveforresultsbaseduponstrategicperformancemeasures.
HopeyouhavevisitedthenewSARDAAwebsite.Whileitisamazing,wecontinuetomakechangestoupdateandimprovethecontent.Adithascreatedournewwebsiteandwearegratefulforthemanyvolunteerhourstheyhavecontributedtomakethisboldchange.
PleaseknowthatSARDAAisTHEnationalorganizationthatisfullyfocusedonimprovinglivesaffectedbythemostseriousneuro-psychiatricillnesses.
Warmestregards,LindaStalters,MSNCEOSchizophreniaAndRelatedDisordersAllianceofAmerica
Wewelcomeourtwonewestboardmembers
JDGarnierandDr.RaymondCho
JDGarnier,isaPrivateClientAdvisorforUSTrust,BankofAmericaPrivateWealthManagement,whereheleadsateamofadvisorsinmanagingassetsforfamilies.Hehasover17yearsofexperienceinthefinancialserviceindustryandhasafocusonestate
planning,taxplanningandinvestmentmanagementforbusinessowners.J.D.attendedLoyolaUniversityandreceivedaBachelorsinBusinessAdministration.HereceivedalawdegreefromSouthTexas
CollegeofLawandislicensedwiththeTexasBarAssociation.J.D.isalsoCertifiedFinancialPlanner(CFP®).J.D.isacommittedvolunteerinmultiplecommunityorganizations.
RaymondYoung-JinChoMD,isanAssociateProfessorofPsychiatryattheUTHealthScienceCenteratTheHoustonDepartmentofPsychiatryandBehavioralSciencesinHouston,Texas.Dr.Choembodythespiritofthecommunityandbringstalentandexpertiseandenergytothetable.Weareveryfortunatetohavehim
byoursideaswecontinuetopromoteimprovementinlivesaffectedbyschizophrenia-relatedbrainillnesses(mentalillnessesinvolvingpsychosis).
Dr.ChocurrentlyisactivelyinvolvedwiththeSocietyforNeuroscience,OrganizationforHumanBrainMapping,CognitiveNeuroscienceSociety,SocietyofBiologicalPsychiatryandtheAmericanCollegeofNeuropsychopharmacology.
SAVETHEDATE!
ShatterStigmaThursday,October,2017
6:30–10:30PMNewYorkCity
WatchfordetailsLydianeInterdonato,Chair
Helpimprovelivesaffectedbyschizophrenia-relatedbraindisorders
MessagefromFFS,FamilyandFriends,Coordinator
Havingjustattendedaperformancebysinger/songwriter'Celia',Iwishtorevisitthefollowing2015messagewhichhighlights
'caregiving'.Celiacreatedthisfromherheart,knowingoftheadversityinourspeciallives.
So,hereweare,SARDAAFamilyandFriends,withalotinlifewehardlyanticipated;alotthatbringschallenges,butlessthanthatfacedbyourlovedoneswithadiagnosis.Verylikelytheyhaveawarenessofhowtheirillnessimpactsourlives,butnotalwaysexpressed.Thisexpression
maybefoundinthelyricsof'TheCaregiver'sSong'bysingerandsongwriterCeliaFarran.Celia'sheart'forallthingsright'isheardinhersong,withwhichyoumayidentify.Ido.
TheCaregiver'sSong:Iwouldn’twishitonanyone.Therollercoasteryou’vebeenonwithme.AndforthetimesI’mnoteasy.Iamsorry.There’sablessinginheartache.Thereislovebeyondpain.Itakenothingforgranted.AndI’llneverbethesame.ThankYou.Chorus:ForCaringforme.Youaremyfamily.It’snoteasyfeelingbroken.ButIwanttheworldtosee.Howyouhavecaredforme.READMORELYRICSANDHEARITHEREThemelodyisasstirring.
Withheart,MaryRoss
FromtheDeskofJohnP.“HappinessSeries”
PersonalControlandHappiness.AnABC-Newsspecialconsidersasoneofthefivekeyfactorsleadingtomorehappinessthelevelof"personalcontrol"apersonhasoverhisorherlife.ThisresemblessomethingcalledControlTheory,whichdistinguishesbetweenaninternallocusofcontrolandanexternallocusofcontrol.An"internallocusofcontrol"isaperson'sbeliefthatlifeoutcomesarelargelytheresultofone'sownattributesandbehaviors.Ontheotherhand,an"externallocusofcontrol"isthebeliefthatoutcomesarelargelydeterminedbyfactorsandforcesoutsideofone'scontrol.Someresearchshowsthatpeoplewithanexternallocusofcontrolaremoresusceptibletodepression,learnedhelplessness,asenseofvictimization,andnegativeresponsestoaversivestimuli.Ontheotherhand,peoplewithaninternallocusofcontrolappeartobehappier.
READMORE
60TipstoCopewithSeriousNeuro-PsychiatricIllnessintheFamilybyRexDickens,SubmittedbyDJJaffeIfyouhaveafamilymemberwithaseriousneuro-psychiatricillness,rememberthesepoints:1.Youcannotcureaneuro-psychiatricdisorderforafamilymember.2.Despiteyourefforts,symptomsmaygetworse,ormayimprove.3.Ifyoufeelmuchresentment,youaregivingtoomuch.4.Itisashardfortheindividualtoacceptthedisorderasitisforotherfamilymembers.5.Acceptanceofthedisorderbyallconcernedmaybehelpful,butnotnecessary.6.Adelusionwillnotgoawaybyreasoningandthereforeneedsnodiscussion.7.Youmaylearnsomethingaboutyourselfasyoulearnaboutafamilymember’sneuro-psychiatricdisorder.READMORE
Wewelcomeyourmessage/artfromSAMembersforinclusioninthe
newsletter.Pleasesubmityourmessageto:[email protected],Houston,TX77094-8222for
considerationfornextmonth'snewsletter.
YourstorymightbeincludedinaSARDAAnewsletterandmightbepublishedinafutureeditionoftheSABlueBook.
PhoneSupportGroups
SAConferenceCallGroupsOnlyforindividualsdiagnosed
Sundays-7pmEasternTimeMondays-4pmEasternTimeThursdays-7pmEasternTimeFridays-7pmEasternTime
SpiritofSAConferenceCallForSALeadersandPotentialLeaders
FirstWednesdayofEachMonth-7pmEasternTime
FamilyandFriendsSupportGroupNotforindividualsdiagnosedEveryTuesday-7pmEasternTime
Toll-freeCallsCall-ininformation(855)640-8271
EntryCode88286491#InternationalNumber(720)362-6499
FacebookSupportGroupOnlyforindividualsdiagnosedJOINTheFacebookGroupHere
ThisisaClosedgroup,asktobeadded.
***HOWTOSTARTANDGROWASAGROUP***
ByMargeryWakefieldWelcometoSA(SchizophrenicsAlliance)!IunderstandthatyouwanttostartanSAgroup,andthatisgreat!READMORE
HelpforpeoplewithSchizophreniaandRelated
Disorders.
Nowitiseasytorecorddetailsandspecificsaboutsymptoms,medication,moods,andmore.Choosewhatyouwanttotrack,andseealltheinformationyouneedtohelpyouoryourlovedonewhoislivingwithschizophreniaandrelateddisorders.
GettheSchizophreniaHealthStorylines™MobileAppToday!ThemobileappisFREEforallusersoniOSandAndroiddevices.Thereisalsoawebversionavailable,accessiblethroughthebrowserofanydesktopcomputerormobiledevice.
SARDAAandSelfCareCatalystshadtheopportunitytoworkwith
KristySpeaks,anindividual,likeyou,livingwithschizophrenia.Kristyisamotherof3,whoaftergraduatingfromnursingschool,wasdiagnosedwithschizophrenia.
Shesaidthatoutofalltheappsinthemarket,SchizophreniaHealthStorylinesself-careappwasthemostsupportiveasitallowshertotrackhersymptoms,moodsandjournalherthoughts.Inaddition,KristydesignedaPositiveAffirmationtoolthatlaunchedattheendofMarch!
ToshowyoursupportforKristy,wearereachingouttoyoutodownloadtheapptoday!Wehopethatyoubenefitthesamewayshedoes!
DownloadSchizophreniaHealthStorylinestoday!
1.Doyouwanttocontributetoashortstoryanthology?
2.WiththehelpofstaffatJohnsHopkinsUniversity,Iamcompilingashortstoryanthologythatwillexclusivelyfeatureshortstorieswrittenbypeoplewithdisabilities.Allofthestorieswillfeaturedisabledmaincharacters.3.FINDOUTMORE4.EmilyDorffer,[email protected],281-734-7370
Submittedby:LarryAckerman/SparrowSangBluesAuthor,Singer-songwriter,...the"ArtistwhoPlaysGuitar..."
"...Therefallsintoeachlife,agivenamountofsuffering,suchthat,
ifwearetruetoit,itdeepensuswherewestand."[from:CanticlesofDesperation,anovel]
ParityComplaintRegistryformentalhealthandaddictioncoverageTheParityComplaintRegistryhasbeenlaunchedtocreateanationalregistrywhichwillbeusedtotrack,studyandreportonhowinsurancecompaniesaremakingadversedeterminations.Thisinformationwillhelpusworkforbettermentalhealthandaddictioncoverage.https://parityquest.org/
*Pleasenote:thisregistrydoesnotautomatetheappealsprocess.TheComplaintRegistryrecordsanddocumentsyourcomplaintwhichwillhelpprovidetheneededinformationtohelpshapepublicpolicyandinfluencelegislation.Youmusttakefollow-upactionwithyourhealthplanorregulatoryagency.TheResourcesPagecanprovideyouwithhelpfulinformation.Clickhereforsomeparityviolationexamples.ClickheretoRegisteracomplaint
NICHDscientistsuncoverroleofproteinsinneuronactivityandneurologicaldiseaseJune23,2017Brainproteinsknownasneuregulinsareimportantforestablishingnormalbrainactivity,accordingtorecentstudiesledbyresearchersattheNationalInstitutesofHealth.Geneticchangesinneuregulinsarethoughttoincreasetheriskofschizophrenia,butitisnotunderstoodhowsuchchangesmightincreasetheriskforthedisorder.READMORE
HowphysicalexercisepreventsdementiaJuly21,2017
Numerousstudieshaveshownthatphysicalexerciseseemsbeneficialinthepreventionofcognitiveimpairmentanddementiainoldage.NowresearchersatGoetheUniversityFrankfurthaveexploredinoneofthefirststudiesworldwidehowexerciseaffectsbrainmetabolism.READMORE
ElectricalStimulationofBrainMayHelpPeoplewithSchizophreniaLearntoCommunicateBetterJuly16,2017UCLAresearchershavefoundthatpeoplewithschizophreniawereabletomoreaccuratelydeterminewhethertwoauditorytonesmatchedordiffered,afterreceivingatypeofelectricalbrainstimulation.Beingabletodistinguishtonesisessentialforverbalcommunication.READMORE
AnoninvasivedeepbrainstimulationtechniqueJune13,2017Brainstimulationtherapiescanplayaroleintreatingcertainneuro-psychiatricdisorders.Theapproachesinvolveactivatingorinhibitingbrainactivityusingelectricity.DeepbrainstimulationwasfirstdevelopedasatreatmentforParkinson’sdiseaseandsubsequentlyusedtotreatepilepsy.READMORE
Formtorequestdocumentationfromanemployer-sponsoredhealthplanoraninsurerconcerningtreatmentlimitationsThisisatooltohelpyourequestinformationfromyouremployer-sponsoredhealthplanoryourinsurerregardinglimitationsthatmayaffectyourneuro-psychiatrichealthorsubstanceusedisorderbenefits.READMORE
FAQsaboutneuro-psychiatricandsubstanceusedisorderparityimplementationandthe21stCenturyCuresActpart38June16,2017Setoutbelowisanadditionalfrequentlyaskedquestion(FAQ)regardingtheimplementationofthePaulWellstoneandPeteDomeniciMentalHealthParityandAddictionEquityActof2008(MHPAEA),asamendedbytheAffordableCareActandthe21stCenturyCuresAct(CuresAct).READMORE
Webinar:TheRoleofCommunityandFamilySupportsinHelpingPeopleImproveTheirComplexHealthConditionsAugust2,2017,1:00-2:00PMETThisSAMHSARecoverytoPracticewebinarwilldrawfromthe
practicalexperienceofthepresenterstoexploretheimportanceoftheintentionalfamily-thosewhosupportourwellness;discusshowcommunitymembershipandnaturalsupportsimpacthealthoutcomesandtheprocessofrecovery;identifyinnovativewaystointegratesocial,family,andcommunityresourcestosupporttheneedsofboththepersonandthefamily;anddiscussthewholefamilyapproachtoservicesandsupports.REGISTERHERE
Webinar:TheRoleofFamilyCaregivinginChronicIllness:ThreeStudiesAugust9,2017,3:00-4:00PMETThisVAwebinarwillsummarizefindingsfromthreestudies,includingtheroles,motivations,andbarrierstoengagingfamilycaregiversinthechronicillnessself-managementfromtheperspectivesofpatients,familycaregivers,andclinicalproviders.Thepresentationwillalsoreviewapilotinterventionstudyintendedtoimprovecollaborationandcommunicationbetweenpatientsandfamilycaregiverstoenhanceself-management.REGISTERHERE
SAMHSA's2017VoiceAwardsAugust16,2017,7:30PMPT,LosAngeles,CASAMHSA's2017VoiceAwardshonorpeopleinrecoveryandtheirfamilymemberswhoarecommunitychampionsseekingtoimprovethelivesofpeoplewithmentalillnessesandaddictions.TheVoiceAwardsalsorecognizestelevisionandfilmproductionsthateducatethepublicaboutbehavioralhealthandshowcasethatrecoveryisrealandpossible.Thisyear,theVoiceAwardsisputtingthespotlightonindividualsandentertainmentproductionsthatprovidehopeandsupporttothosepastandpresentservicememberswhohavefacedmentalhealthandaddictionchallenges.Reserveyourseat(whetherinpersonoronline)nolaterthanFriday,August4.READMORE
Webinar:MentalHealthEconomics:AnalyzingValueAugust22,2017,9:00-10:30AMETThisNIMHGlobalMentalHealthwebinarisaimedprimarilyatresearchersandhealthcarepractitionersinterestedinaddressingorbetterunderstandingissuesofcost,cost-effectivenessandvalueintheirwork.Thereisanincreasingexpectationandneedtodemonstratenotonlythehealthandotherimpactsofinterventionsandinnovationsinhealth,butalsoassesswhatittakesintermsofresourcestodevelop,maintainorscale-upanintervention,andbeabletolinkresourcesandcoststoprimaryoutcomesofinterest.Accordingly,thewebinarwillstartwithanoverviewofkeyprinciplesofhealtheconomicanalysis,beforemovingintoapresentationofanalyticalsteps,methodsanddata
requirements.Participantsshouldcomeawaywithabettergraspofwhyeconomicanalysisisneeded,whatisrequiredtodoitandhowtogoaboutit.REGISTERHERE
VirtualEvent:AnnualSummit:AdvancesintheStateoftheScienceandBestPracticeSeptember19-21,2017The2017DefenseCentersofExcellenceforPsychologicalHealthandTraumaticBrainInjuryAnnualSummitwillconnecthealthcareprofessionals,researchers,andacademiciansinvolvedinallaspectsofpsychologicalhealthandtraumaticbraininjurycareforthemilitarycommunity.Thisyear'seventwillofferreal-timeaccesstoupto28hoursofstate-of-the-scienceprogramming.Joinothersfromaroundtheglobetoparticipateinpaneldiscussionsandquestionandanswersessions,networkwithprofessionalsandpeers,visitthevirtualexhibithallforresources,andearnupto14CECsduringthevirtualevent.REGISTERHERE
DonatetoSARDAA
BrainCampaign:TakethePledge
IwillchangemylanguagefromBehavioralorMentaldisordertoBraindisorder.
Iwilleducateotherstochangetheirlanguagefrommentalillnessestobrainillness.Iwillnotusestigmatizing,discriminatoryorderogatorylanguagerelatedtobraindisorders.Iwillencouragemypeers,familymembers,andcolleaguestoadvocatewhentheyseediscriminatorylanguageorpracticesinthemediaorinpublic.Iwilladvocatethatpeoplewithbraindisordershaveequalandcomprehensivehealthcare.Iwilltreatallpeoplewithbraindisorderswithrespectandcompassion.
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