RepresentativesfromNarcolepsyNetworkjoinedhundredsofothersfromthenarcolepsycommunityattheFDA’spublicmeetingonnarcolepsy
A Publication of Narcolepsy Network, Inc.
Fourth Quarter 2013
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2013 is the Biggest Conference Yet!
THE NETWORK
The28thannualNarcolepsyNetworkConferenceinAtlantawasbig!Biginsize,withmorethan400PWNsandtheirsupportersattending.Biginstature,withsixofthenarcolepsyworld’sbestresearchersanddoctorsmakingpresentations.Bigininformation,withmorethan40sessions.Andbiginfunandfellowship,witholdfriendsreuniting,newfriendshipsforming,andmanypeoplemeetingotherPWNsfortheveryfirsttime.
TheconferencekickedoffFridaynightwithregistrationandtheopeningreception.Saturdaystartedwithbreakfast,thekeynotepresentationbyDr.MichaelThorpy,andanupdateonnarcolepsyresearchfromDr.JerrySiegel.
Conference-goersthenheadedtosmallerpresentationsthatmatchedtheirinterests.Subjectsrangedfromsucceedinginschoolwithnarcolepsytoresearchupdates(turntopage6formore)today-to-daylivingandsupport.
OnSunday,attendeescontinuedtoattendsmallgroupsessions,thengatheredforlunchandaresearch-focusedpresentationbyDr.ThomasScammell.
Throughouttheweekend,attendeeshadtheopportunitytobrowsetheN[Art]:NarcolepsyArtexhibitfeaturingtheworkofmorethan20PWNs,andtomeetauthorsandartists.
Astheconferencewounddown,oldandnewfriendsmadeplanstomeetupagain,eitheronlineoratour2014conferenceinDenver.Moreinformationondateswillbeavailablesoon.
Narcolepsy Community Shines at FDA Public Meeting byKarenRorie
In This Issue
• A Word from Our Executive Director 3 • Research Update 4
• Reaching Out to Educate Medical Professionals 5
• Conference Research Presentations 6
• Congratulations to our 2013 Award Recipients 7
• Voices From the NN Conference 8
• News from PWNs 10
drugdevelopmentonSeptember24.Approximately150peopleattendedthemeetinginpersonatFDAheadquartersisSilverSpring,MD,withnearly700moreattendingviaanInternetwebcast.Amongthein-personaudience,67%hadnarcolepsy.FDAofficialshavedescribedthestrongresponsetothenarcolepsymeetingasunprecedented.
PerspectivessharedatthemeetingandthroughapublicdocketwillprovidetheFDAwithhelpfulinsightswhenconductingbenefit-riskassessmentsfornewdrugstotreatnarcolepsy.PatientresponsescouldalsoshowtheFDA
Highlights from the Keynote Address Dr.MichaelThorpy,directoroftheSleep-WakeDisordersCenteratMontefioreMedicalCenterinNewYorkCity,wasthekeynotespeakerinAtlanta.Hispresentation,Recent Advances in the Understanding of Narcolepsy,coveredchangestothediagnosticcriteriafornarcolepsy,advancesinresearch,andchangesintreatment.
InMay2013,thelatesteditionoftheDiagnostic and Statistical Manual of Mental Disorders (DSM-5)wasreleased.Thenewmanualincludeschangestothediagnosticcriteriafornarcolepsyandintroduceslevelsofseverity.
InJune2013,theInternationalClassificationofSleepDisordersThirdEdition(ICSD-3)wasreleased.Itdividesnarcolepsyintotwotypes,Type1,NarcolepsywithCataplexy,andType2,NarcolepsywithoutCataplexy.
thattheyneednewwaystomeasuretheeffectivenessoftreatmentsbeingreviewed.
Thereweretwomainareasofdiscussionatthemeeting:“diseasesymptomsanddailyimpactsthatmattermosttopatients,”and“patients’perspectivesoncurrentapproachestotreatingnarcolepsy.”Foreachtopic,apaneloffivepatientsmadepreparedstatementsfollowedbyafacilitateddiscussionwiththeliveandonlineaudiences.
ThemeetingbeganwithremarksfromFDAofficialswhothankedthe
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Narcolepsy Community Shines at FDA Public Meeting continued from page 1
Participants cited the need for treatments for:
• ExcessiveDaytimeSleepiness
• BrainFog
• DisruptedNighttimeSleep
• Hypocretin/Orexinloss
• Treatmentsspecificallyforchildren
NN representatives Sara Kowalczyk, Suporn Sukpraprut, Mark Patterson, Melissa Patterson and Patricia Higgins at the FDA.
communityforitsoutstandingresponseandaskednarcolepsypatientstoshakethingsupduringthemeeting.Theaudiencerespondedwithfourhoursofinsightfulcomments.
Topic One: Disease Symptoms and Daily Impacts
Thefirstpanelofspeakersaddressedthesymptomsofnarcolepsythatmostaffectthem.PanelistandNarcolepsyNetworkmemberFranRosentraveledfromFloridatoattendthemeeting.Likemanyspeakers,RosenidentifiedExcessiveDaytimeSleepiness(EDS)asthemostproblematicsymptomforher.
“Atacertainpoint,Ihadtogiveupcontrolofmylifetonarcolepsy.ItcontrolshowlongIcanshop,howlongIcanread,howlongIcanworkonmycomputer,”Rosensaid.“CanIgototheparty,willIbeabletostayupduringthemeeting,amIabletodrivetoday?”
NNmemberBrandonCoonrod,a15-year-oldhighschoolsophomore,saidthatEDSwasthemostdifficultsymptomforhim.“IfI’msittingdowninclass,orsittingprettymuchanywhere,youcancountonI’mgoingtofallasleep,”hesaid.
Otherfrequentlycitedsymptomswerecataplexy,whichaspeakerdescribedas“beingawakeinsideacorpse,”“brainfog,”hallucinations,anddifficultysleepingatnight.
Topic Two: Patients’ Perspectives Narcolepsy Treatment
Speakersonthesecondpanel,addressingcurrentapproachestotreatingnarcolepsy,describedthegreatbenefitsofmedicationsbutalsotheirlimitations–andforsomethegreatexpense.
“Iwanttocontrolnarcolepsyandnotletitcontrolme,”panelistCaseyThompsoncommented.Aroundtheroom,manyheadsnoddedinagreement.
LaShunRay,themotherofa9yearoldwhowasdiagnosedwithnarcolepsyat5saidsheworriesaboutherdaughtertakingthreemedicationsatsuchayoungage.Oneofthemisapprovedforusebyadults,butnotchildren.Withoutmedication,shesaidherdaughterwouldnotbeabletogotoschool.
Evenso,whenshereturnshome,sheisexhaustedandtheyhavetodecidewhethersheshouldgostraighttosleeporeatfirst.
“Herwillistoeatfirst,thensleep,butherbody’swillistosleepfirst.Whenshedoeswake,sheisnowbattlinghungerandaheadache.Thisisahostilebattlebetweenthebody’sneeds,”Raysaid.
Manyspeakersreportedyearsorevendecadesofincorrectdiagnosesandbeingtreatedfordiseasestheydidn’thave.Developingtolerancetomedicationsanddentalproblemswereotherissuesspeakersidentified.
Othercommonthemesaddressedincludedgeneralignoranceaboutnarcolepsy,andthedifficultiesofstayinginschoolandholdingajobinasocietythatisnotverynap-friendly,andkeepinguphomeandfamilyresponsibilities.
JustinGreeneofLeesburg,VAtoldhownarcolepsyhadinterruptedhispromisingcollegeeducation.Hedroppedoutbecausehecouldn’tkeepupthehighgradeshehadalwaysachievedbefore.“Iwanttobethelastofthechildrentohavenochoicebuttosleepthroughabrightfuture,”hesaid.
A Learning Experience
FDAofficialswerehighlyattentivethroughoutthemeetingandthroughquestionsandanswerswereclearlylearningmoreaboutthedisease.Forinstance,speakershelpedofficialsunderstandthatnappingisaprimaryeffectofnarcolepsyandnotjustawayofcopingwithit.OtherdiscussionswithFDAofficialsfocusedonthepharmaceutical,behavioral,dietaryandlifestylealternativesthatpatientstryinordertocopewithlimitedmedicationbenefits,progressiveaspectsofthedisease,drugsideeffectsorgradualtolerancetothemedications.
“Allthepanelistsandspeakersdidanoutstandingjobofrepresentingthemanyfacetsofnarcolepsyandsharingthechallengesthatpeoplewithnarcolepsyface,”saidNN’sExecutiveDirectorEvelineHonig,MD,MPH.“Thishasbeensuchawonderfulopportunityforpeoplewithnarcolepsytobeheardandtoinfluencethefutureofnarcolepsytreatment.Wearevery,verypleasedwiththemeeting.”
TheFDAalsocollectedinformationfromPWNsthroughapublicdocket,whichremainedopenfortwomonthsafterthemeeting.TheFDAisnowintheprocessofreviewinginformationgatheredatthemeetingandviathedocketandcreatingareportonthemeeting,whichwillbesharedwithFDAofficialswhoreviewandapprovenewtreatmentsaswellaswiththepublic.Thereportisexpectedtobereleasedthisspring.
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Dearfriends:
Thisisourlastnewsletterin2013.WehavehadaverysuccessfulyearwiththeverywellattendedconferenceinAtlantaasourwonderfulhighlight.Itwasattendedbyover400people.Wehadsomanygreatsessionsincludinganumberwithwellknownresearchersfromalloverthecountry;wehadagreathotelwithwonderfulstaffandexcellentfood;everyonemadenewfriends,andmanyofussawoldfriendsaswell.
Thesocialaspectofourconferenceisextremelyimportant.Manyparentstoldmethattheirteensandyoungadultshadsuchagoodtimeandmadenewfriends.Fortheseyoungpeople,learningaboutnarcolepsy’snewresearch,medicationsandwaystocopemaynotbeasimportantasmeetingotheryoungpeoplewhostrugglewiththeexactsameissues.
WeatNarcolepsyNetworkaresohappywecanprovidethisweekendoflearning,fun,friendshipandfeeling“normal”foraveryreasonableprice.WehopethatmanyofyouwillmakeplanstocometoDenverinOctober2014.WearealreadyworkingontheDenverconference.Ourattendancehasgrownsubstantiallybutweareintentonprovidingprofessional
A Word from Our Executive Director by Eveline Honig, M.D., M.P.H.
directionandatthesametimekeepingit“homey”withtheideathateveryoneshouldfeeltheycame“home.”
WewereverypleasedthatourtwoResearchersoftheYear,Dr.TomScammellandDr.JerrySiegel,cametoaccepttheirawardsandgrantsandtosharetheirexpertisewitheveryonewhoattended.Withournewlycreatedresearchcommittee,wewillfollowandassistintheseandotherresearchinitiatives.
Myfriendandformercolleague,Dr.MeetaGoswami,DirectoroftheNarcolepyInstituteintheBronx,receivedtheMahatmaGandhiPravasiSammanAwardforoutstandingservices,achievementandcontributions.OnOctober4,2013,the144thanniversaryofMahatamaGandhi’sbirth,theHonorableBaronessSandipVermapresentedtheawardattheHouseofLordsinLondon.TheceremonywasattendedbydignitariesfromaroundtheworldduringtheGlobalAchieversConclave.
TheMahatmaGandhiPravasiSammanGoldMedalrecognizespeopleofIndianoriginforsignificantcontributionsintheirfieldsofexpertiseinthecountryinwhichtheyliveandinservicetotheglobalcommunity.Asmanyofyouknow,
Dr.GoswamihasbeenhelpingpeoplewithnarcolepsyinNewYorkCitysince1985andshecertainlydeservesthisaward.Weareveryproudofher.
Lastly,weplantohaveanexcitingnewyearwithmanyprojectsandprograms.WeareagainaskingeveryonetocontributetoNationalSleepAwarenessWeek.Pleasecontactusformoreinformation.Ifyouareinterestedinorganizingafundraiserorwouldliketosetupasupportgroup,pleaseletusknow.
Wishingyouawonderfulandpeacefulholidayseason!
Warmregards,
Dr.EvelineHonig
RenewyourmembershipbyJanuary15,2014andyouwillalsoreceiveaQRcodedmedicalalertwristband.Thiswristbandletsemergencyrespondersknowthatyouareapersonwithnarcolepsyevenifyouarenotabletospeakforyourself,andtheQRcodelinksmedicalpersonneltoawebpagewithinformationaboutnarcolepsysymptoms,medications,andtreatmentprecautions.Havingthisinformationavailabletoyourcaregiversinanemergencyhelpsyougetthesafeandeffectivecareyouneed.
Stayconnectedtoyournetwork.Visitwww.narcolepsynetwork.orgtorenewyourmembershiptoday!
It’s Time to Renew Your NN Membership! 2014isjustaroundthecorner,andwithitcomesanewmembershipyearatNarcolepsyNetwork.Asyoupreparetoturnthecalendarto2014,takeamomenttorenewyourNNmembershiptoo.
Dr. Goswami and her son after the award presentation in London.
NN membership benefits include:
• AsubscriptiontoThe Network,NN’squarterlynewsletter
• Onlineaccesstoournewsletterarchive
• Discountedregistrationrateforourannualconference,beingheldinDenverinOctober2014
• InvitationstoNNevents,activities,andspecialnetworkingopportunities
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Exciting New Drug Development for Narcolepsy bySupornSukpraprut,MSc,MA,PhDandAnthonyTam,PhD
Research Update
ForanumberofyearsAerialBioPharma,LLC,hasbeendevelopinganewstimulantdrug,ADX-N05,totreatEDS(excessivedaytimesleepiness)associatedwithnarcolepsy.Thephase2aclinicaltrialwasconductedfrom2011-2012tostudythesafetyandeffectivenessin33individualswithnarcolepsy.ParticipantsweregivenatreatmentofplacebofortwoweeksfollowedbyADX-N05fortwoweeksorviceversa.Thiscross-overdesignmeansthateveryparticipanttookboththeplaceboandADX-N05drugfortwoweekseach,howeverparticipantsdidnotknowwhentheyweretakingeachtreatment.
Theprimaryoutcomesofinterestwerethechangesinscoresfromteststakenatthebeginningandattheendofthestudy.TheresearchindicatedanincreaseintheaveragesleeplatencyoffourMaintenanceofWakefulnessTests(MWT),improvedscoresfortheEpworthSleepinessScale(ESS)andimprovedscoresintheClinicalGlobalImpression(CGI)whencomparingtheADX-N05andplacebotestnumbers,withstatisticalsignificance.
TheMWTconsistsoffourtestswithtwohoursinbetweeneachtest,andisdesignedtoseehowlongonecanremainawake–almosttheoppositeoftheMSLT(multiplesleeplatencytest),whichmeasureshowlongittakesforonetofallasleep.TheESSisaquestionnairethatscoresanindividual’ssleepinessduringtheday.TheCGIisameasuresummarizedbyaclinicianofthepatient’sglobalfunctioning,whichincludesthepatient’shistory,symptoms,behaviorandtheimpactofsymptomsonthepatient’sabilitytofunction.Theresultsfromthephase2aclinicaltrialindicateindividualsonADX-N05sawimprovementintheirabilitytostayawakeduringthedayanddecreaseddaytimesleepiness,aswellasanimprovementinsymptoms,emotions
andcopingwithsymptomsandimprovedfunctionalityofdailylife.
Aphase2bclinicaltrialwasdesignedtovalidatetheresultsfromthephase2trialinmoreparticipantsandforalongerduration.Phase2bincluded93individualswithnarcolepsy,andparticipantsweregivenatreatmentofeitherplaceboorADX-N05for12weeks.Differentfromphase2a,participantswereonlygivenonetreatmentandnotboth.OnOctober1,2013,Aerial
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A clinical trials glossaryClinical Trial (Interventional Study)4:Aclinicalstudyinwhichparticipantsareassignedtoreceiveoneormoreinterventions(ornointervention)sothatresearcherscanevaluatetheeffectsoftheinterventionsonbiomedicalorhealth-relatedoutcomes.Theassignmentsaredeterminedbythestudyprotocol.Participantsmayreceivediagnostic,therapeutic,orothertypesofinterventions.
Investigational New Drug4:Adrug,orbiologicalproduct,thatisusedinaclinicaltrialbuthasnotbeenapprovedbytheFDA(thedrugiseithernotavailableforadoctortoprescribeor,isavailable,butnotapprovedbytheFDAfortheusebeingstudied).
Primary Outcome Measure4:Theplannedoutcomemeasureintheprotocolthatisthemostimportantforevaluatingtheeffectofanintervention.Mostclinicalstudieshaveoneprimaryoutcomemeasure,butsomemayhavemorethanone.
Secondary Outcome Measure4:Aplannedoutcomemeasureintheprotocolthatisnotasimportantastheprimaryoutcomemeasure,butisstillofinterestinevaluatingtheeffectofanintervention.Mostclinicalstudieshavemorethanonesecondaryoutcomemeasure.
Experimental Arm4:Agroupofparticipantsthatreceivesthe
BioPharmaannouncedpositiveresultsforthephase2bclinicaltrial.Outcomesofinterestincludedthesamethreeprimaryoutcomesfromthephase2atrial(i.e.MWT,ESSandCGI-C)andalsoincludedthenumberofcataplecticattacksperweek.TheseresultsareencouraginginlightoftheSeptember24FDApatientfocuseddrugdevelopmentmeeting.Morecompaniesandresearchtodevelopnewdrugstotreatsymptomsofnarcolepsyarealwayswelcomed.
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Reaching Out to Educate Medical ProfessionalsbyMarkPatterson,MD,PhD
OneofthemissionsofNarcolepsyNetworkistoeducatethosewhocomeincontactwithpeoplewithnarcolepsy(PWN).Previousnewslettershavediscussedtheoutreachtoschoolnurses,principals,andteachers,avitallyimportanteffortasthesepeoplehavesignificantdailycontactwithyouthwhomayhaveundiagnosednarcolepsy.Itisalsoveryimportanttoeducatephysiciansandotherhealthcareprovidersaboutthecondition.
AsmanyPWNreport,therewasoftenaverylonglagtimebetweentheonsetoftheirsymptomsandtheireventualdiagnosis.Onereasonforthisdelayisthenon-specificnatureofmanyofthesymptomsofPWN.Anotherreasonisthatmedicalprofessionalscanonlydiagnoseaconditionofwhichtheythink.WithanestimatedprevalenceintheUnitedStatesof1in2,000,manyphysicianswillencounteralimitednumberofPWNduringtheircareers.Assuch,itisessentialthatpartofourawarenesscampaignistotargetmedicalproviderstoconsidernarcolepsyinasymptomaticpatient.
Aspartofthiseffort,Ihadtheopportunitytogiveseveralpresentationstomedicalpersonnelthisyear.Iamapediatricianingeneralpracticewhoalsoprovidesclinicaltrainingtothird-yearmedicalstudents.
InMarch,Ihadthechancetotag-teamwithapatientwithnarcolepsyandcataplexyingivingapresentationtosecond-yearmedicalstudentsattheVirginiaCollegeofOsteopathicMedicineinBlacksburg,VA.Idiscussedthemedicalaspectsofnarcolepsytothe25students,thenmyco-presenterdiscussedtheimpactoftheconditiononherlifeandcopingmechanismsshehasemployed.Thestudentswereverygratefulfortheinformationandwereexcitedtohaveaface-to-facemeetingwithapatient.
InMay,Iwasinvitedtogive“GrandRounds”tothePediatricDepartmentoftheCarilionClinicinRoanoke,VA.GrandRoundsareaneducationalforumheld
bymedicalcentersinordertoprovideforthecontinuingeducationofthemedicalstaff.Atthismeeting,morethan40membersofthepediatricdepartmentwereabletohearmytalkonpediatricsleepdisorders,withaspecialemphasisonnarcolepsy.Manypediatriciansareunawarethatnarcolepsyoftenhasitsonsetduringtheteenageyears.Theattendeeswereveryappreciativeofthelectureandinvitedmebacktospeakagain.
InAugustIwasabletofollowuponaninvitationtogiveacasepresentationonaPWNandspeakaboutmyinvolvementwithNarcolepsyNetworkattheCarilionClinicSleepCenterinRoanoke,VA.Morethan20sleepspecialistsandtechnicianswereon-site,withmoreconnectedbyphonefromsatellitelocations.Theywereexcitedtohearaboutnarcolepsy(asopposedtotheirusualtalksonsleepapnea)andmademeanhonorarymemberoftheirgroup!Partlyasaresultofmytalk,theyareplanningonstartinganarcolepsysupportgroupfortheRoanoke,VAarea.
Soasyoucansee,yourorganizationiscontinuinginitsefforttoeducateandadvocateonyourbehalf.PleasedowhatyoucantosupportNarcolepsyNetworkinallitsactivities.Additionally,talktoyourmedicalprovidersandencouragethemtohelpeducatetheirpeers.Remember, we are all in this together!
Exciting New Drug Development for Narcolepsy continued from page 4
Dr. Patterson
interventionthatisconsideredtobeeffective.
Placebo4:Asubstancethatdoesnotcontainactiveingredientsandismadetobephysicallyindistinguishable(thatis,itlooksandtastesidentical)fromtheactualdrugbeingstudied.
Baseline Characteristics4:Datacollectedatthebeginningofaclinicalstudyforallparticipantsandforeacharmorcomparisongroup.Thesedataincludedemographics,suchasageandgender,andstudy-specificmeasures(forexample,systolicbloodpressure,priorantidepressanttreatment).
Adverse Event4:Anunfavorablechangeinthehealthofaparticipant,includingabnormallaboratoryfindings,thathappensduringaclinicalstudyorwithinacertaintimeperiodafterthestudyisover.Thismayormaynotbecausedbytheinterventionbeingstudied.
Randomized Allocation4:Astrategyinwhichparticipantsareassignedtoarmsofaclinicaltrialbychance.
New Drug Application (NDA) Key Information2
• Safetyandefficacyofthedrugandthebenefitsofthedrugoutweightherisks.
• Appropriatelabelingandpackageinsert.
• Methodsusedinmanufacturingthedrugandthecontrolusedtomaintainthedrug’squalityareadequatetopreservethedrug’sidentity,strength,quality,andpurity.
References:1. U.S.FoodandDrugAdministration.“Code
ofFederalRegulationsTitle21”.www.fda.gov.Revised4April2013
2. U.S.FoodandDrugAdministration.“NewDrugApplication(NDA)”.www.fda.gov.Revised21Feb.2013
3. U.S.NationalLibraryofMedicine.“FAQClinicalTrials.gov-ClinicalTrialPhases”http://www.nlm.nih.gov.Revised18April2008.
4. U.S.NationalInstitutesofHealth“GlossaryofCommonSiteTerms.http://clinicaltrials.gov/ct2/about-studies/glossary.RevisedAug.2012
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Conference-Goers Hear the Latest in Narcolepsy Research
2013wasabigyearfornarcolepsyresearch,soresearchwasahottopicattheconference,withfournotednarcolepsyresearchersmakingpresentationsaboutrecentfindings.
New Developments in Understanding Narcolepsy and the Hypocretin System by Jerry Siegel, PhD
Dr.Siegel,aprofessorofpsychiatryatUCLA,spokeabouthisrecentlyreleasedresearchshowinganincreaseinhistaminecellsinthebrainsofpeoplewithnarcolepsy.Siegeltheorizesthattheincreaseinhistaminecellscouldcorrelatetothelossofhypocretincells,whichleadstonarcolepsy.
Siegelsaysthatthisisthefirstevidenceofanincreaseinthenumberofneuronsinanybrainsystem,inanydiseaseinhumans.Thisfindingleadsresearcherstobelievethatitmaybepossibletotherapeuticallymanipulatethenumberofneuronstotreatdiseases,includingnarcolepsy.
Thefindingonhistamineisalsosignificantbecause,“therearenowtwoknownmajorabnormalitiesinnarcolepsy.Beforewethoughteverythingwasduetothehypocretin,”Siegelsaid.
Siegelalsosharedsomeinformationabouthiscurrentresearchonhowfactorssuchassocialinteractionandlightexposureaffecthypocretinandotherarousalsystems.
Thecurrenthypothesisisthathypocretinreleaseiscorrelatedwithpositivelymotivatedmotoractivity.Thedataisconsistentamongfivedifferentspecies–mice,rats,cats,dogsandhumans.
Theidea,Siegelsays,“isthatarousalisnotavolumecontrolthat’supordown,butit’smultidimensional.”
The Neuroscience of Narcolepsy by Thomas Scammell, MD
Dr.Scammell,aprofessorofneurologyatHarvardMedicalSchool,BethIsraelDeaconessMedicalCenterandBostonChildren’sHospital,reviewedwhathasbeenlearnedaboutthebrainmechanismsofnarcolepsy,includinghisownresearchonthehistaminesystem.
Scammell’srecentlypublishedresearchontheincreaseinhistamineinthebrainsofpeoplewithnarcolepsywasasurprisingdiscoverythatopensanumberofpossibilitiesabouthowthehistamineandorexinsystemsaffecteachother.Hetheorizesthattheincreaseinhistaminecouldplayaroleinmaintainingconsciousnessduringcataplexyandsleepparalysis.
“Weknowthatthehistamineneuronshelpkeepyouconscioussoifthatsystemisnowrampedupsomehow,itmaykeepyouconsciousevenwhenyou’reinaREMlikestate.”
Scammellisalsoexploringthereasonsthatstrongemotionstriggercataplexy.Inmice,themedialprefrontalcortexofthebrainistheareathatproducestheemotionsthatcausecataplexy.Byturningofftheseareasinnarcolepticmice,thenumberofcataplexyattacksisreduced.
“Sowhatthisisshowingisthatpartofthebrainisnecessaryfortheproductionofcataplexy,”Scammellsays.“Sonowthisisanothercellgroupthatwethinkisimportantforregulatingcataplexy.”
What’s in a Name? Understanding the Terminologies for the Family of Hypersomnias by David Rye, MD, PhD
Dr.Rye,professorofneurologyatEmoryUniversity,beganhispresentationbydiscussingthemeaningofthenamesgiventotheclassofsleepdisorderscalledhypersomnia.TherootsofthewordHypersomniaarehyper(above,over)andsomn(sleep),sothedefinitionofhypersomniaistoomuch,orexcessivesleep.
Inthemedicaldiagnosticcodingmanuals,narcolepsyisclassifiedasahypersomnia.Thispresentsaproblem,Ryesays.Hypersomniaandnarcolepsywithcataplexyaretwoentirelydifferentthings.Inhypersomnia,sleepisexcessiveindepthandduration,whilenarcolepsyisadisorderofbadlytimedsleepandsleepattacks,butnottoomuchsleepovera24hourperiod.
SearchingforawaytotreatpatientswithexcessivesleepinesswhodidnotfitadiagnosisofnarcolepsywithcataplexyledRyedownapathtoaresearchdiscovery,whichwasrecentlypublishedinthejournalScience Translational Medicine.
Ryeandhiscolleagueswonderediftheproblemmighthavetodowithagainofsomethingratherthanalossofsomething.Inexploringthisidea,theydiscoveredthatinpatientswithhypersomnia,thegamma-aminobutyricacid(GABA)systemisoveractive.
“Inmanypatientsthathavebeenlabeledhypersomnia,idiopathichypersomnia,narcolepsywithoutcataplexy,intheirspinalfluidthereissomethinglikeWD-40thatmakestheirGABAsystemworkbetter.Itactsverymuchlikeanaturalanestheticorhypnotic,”Ryesaid.
Therearestillmanyunansweredquestionsaboutthismysterioussubstance,whichdoesnothaveanameyet,andmanychallenges,butDr.Rye’sresearchwillcontinuetotrytofindtheanswers.
Narcolepsy: Is There an Environmental Trigger? by Todd Swick, MD
Dr.Swick,thefounderofNeurologyandSleepMedicineConsultantsinHoustonandassistantclinicalprofessorofneurologyattheUniversityofTexas-Houston,offeredanoverviewofrecentresearchshowingtheroleofgeneticandenvironmentalfactorsinthedevelopmentofnarcolepsy.
“Thisisnotastrictlygeneticdisorder,”Swicksaid.Thereisagenefornarcolepsy,
continued on page 9
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Ruth Justice Nebus Volunteer of the Year Award: Laura J. EvertLaurahasfilledmanyrolesincludingservingontheBoardofTrustees,providingartworkfortheCreativeCornersectionofourmembernewsletter,andpresentingsessionsatmanyconferences,includingthisyearwhenshepresented“FearNoArt:DreamSleepandCreativity.”ThisyearLauraalsocoordinatedtheartshowatourconferenceinAtlanta,andraisedmoneytosupporttheshowthroughanonlinefundraisingcampaign.
LauraisalsothefounderofN[Art],agrassrootsefforttoeducatetheworldaboutnarcolepsyandtheimportanceofsleepthroughcontinuallyevolvingcreativeworksandprojects.LearnmoreaboutN[Art]onFacebook.
Laura J. Evert
Kevin Gonzales and his fiancée, Megan Phillips
Dr. Scammell
Congratulations to our 2013 Award Recipients
Thomas E. Scammell, MD Jerry Siegel, PhD
Public Awareness Award: Kevin E. GonzalesKevinisaseniorstudyingsociologyandpoliticalscienceatOklahomaStateUniversity.Inspiredbyhisfiancée,MeganPhillips,KevinorganizedtheDreamBigConcertinFebruaryof2013.Followingherdiagnosisofnarcolepsyin2012,MeganwasworriedthatnarcolepsycouldcauseachasminherrelationshipwithKevin.Toshowherhisloveandsupport,KevindecidedtostartabenefitconcerttoraiseawarenessandfundsforNarcolepsyNetwork.TheconcertwasheldonFebruary15andwasahugesuccess,withmorethan250peopleattending.ThroughticketandT-shirtsalesanddonationstheconcertraisedmorethan$2,000forNarcolepsyNetwork.
Both Dr. Scammell and Dr. Siegel received monetary grants in support of their narcolepsy research.
Dr. Siegel
Dr.ScammellisaprofessorofneurologyatHarvardMedicalSchool,BethIsraelHospitalMedicalCenter,andBostonChildren’sHospital.In2013hisstudy“Increaseofhistaminergictuberomammilaryneuronsinnarcolepsy”waspresentedattheSLEEPMeeting.Dr.Scammell’sstudyprovidessurprisingevidencethatpeoplewithnarcolepsyhaveanincreasednumberofneuronsthatproducehistamine,suggestingthathistaminesignalingmaybeanoveltherapeutictargetforthispotentiallydisablingsleepdisorder.
Dr.SiegelisaprofessorofpsychiatryatUCLA.Hislaboratoryhasmadediscoveriesconcerningthelossofhypocretincellsinhumannarcolepsy.In2013,hisstudy“Greatlyincreasednumbersofhistaminecellsinhumannarcolepsywithcataplexy”waspublishedintheonlineeditionofthejournalAnnals of Neurology.Dr.Siegel’sresearchshowsthatpeoplewiththedisorderhavenearly65percentmorebraincellscontainingthechemicalhistamine.Theirresearchsuggeststhatthisexcessofhistaminecellscausesthelossofhypocretincellsinhumannarcoleptics.
Researcher of the Year Awards:
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Voices From the NN Conference
Conference a Great Experience for Young People with Narcolepsy byMelissaPatterson
Thisyear’sNNConferencehadalotofgreatsessionsforyoungerPWNs,startingonSaturdaywithafantasticandinformativesession,Succeeding Through High-School,ledbySharonLinkO’Shaughnessy,withsomegreatinputfromfirst-timeconferenceattendee,BaileyWedelich.SomeoftheinformationfromthatsessionisnowupontheNarcolepsyNetworkwebsite,foranyonelookingforresourcesonschoolaccommodations.Inthesametimeslot,someoftheolderyouthfoundSucceeding through College and Grad School,ledbyAnthonyTam,veryinspirational,thoughsomepeoplesaidtheyhadwantedtoattendboththehigh-schoolandcollegesessions.
Afterlunch,SharonledanothersessionWhat’s Up With My Brain Anyway? Games to explain the Narcoleptic Brain.Thereweren’tmanygamesinvolved,butSharondidhavesomegreatsuggestionsforPWNstryingtostayorganized,plussomecommonsenseadviceonstayinghealthy.Sheremindedpeopletotakecareoftheirnarcolepsybytakingcareoftheirphysicalhealthbyeatinghealthyfoodsandtryingtostayactive—goodadviceforeverybody!
Laterthatafternoon,JulieFlygare’ssession,Narcolepsy and Your Social Life,wasstandingroomonly.Julietalkedaboutherpersonalhistoryandalsoofferedadviceforpeoplefeelingpressuredbyfriendsto“benormal”andforPWNstryingtojuggleasociallifeandsleepschedulethatclash.
TherestofSaturdaywasprettymuchfreetime—personally,IenjoyedafabulousdinneratMaggianoswithahandfulofother20-somethings,thentookthenighttourofAtlanta.
Sundayseemedtobealittlemorefree-form,especiallyinthemorning.Ihostedaninformalsessiononcollegeaccommodationsanddormliving(informationcomingsoontotheNNwebsite!),andsomeoftheotheryouthusedthemorningtoinvestigatethetablesinthelobbyarea.
Justbeforelunch,KatieO’ConnellledagreatsessioncalledFrom Grief to Relief: Coping with a Sense of Loss Post Diagnosis,whichgavepeopleachancetotalkaboutoneofthemoreprivateaspectsofbeingdiagnosedwithnarcolepsy.
Afterlunch,JulieFlygareledasessiononCommunicating Narcolepsy in Everyday Life.SomeotherpopularsessionsforyoungPWNsincludedNiawithSueDambrauskas,Time Management TipswithHeatherRogers,andFEAR NO ARTwithLauraEvert.
MakingpostersforNicoleJeray’s“SwingingforSleep”campaignandinformalsocialgatheringswerealsopopularactivities.
My First Narcolepsy Network Conference byFranRosen
WhenIjoinedNarcolepsyNetworkthispastspringIdecidedIwoulddefinitelyattendtheconferenceinOctoberinAtlanta.IwishIcouldsaythatIbasedmydecisiononsomethingimportantbutitwasreallyallaboutlocation.Ifeltifitwasn’tanawesomeexperience–ohwell,atleastIwasn’ttravelingacrossthecountry.FlyingfromFloridatoGeorgiawasnotabigdeal.LittledidIknowthenthatattendingthenarcolepsymeetingattheFDAandattendingtheconferenceafewweekslaterwouldhavesuchaprofoundandpositiveeffectonmylife.
Spendingtheweekendwith400peoplewhoaredrowsyandinafoglikemeissooooorefreshing.Whatawonderfulandunexpectedsurprise.Howliberatingandcomfortingitisnottobejudged,staredat,embarrassedordisapprovedoffor48hours!Itwasallaboutacceptance.
Itwasaweekendoftotalcamaraderie,bondingandmakingnewlifelongfriends.Formanywhoattendyearafteryearitwasanannualreunionwithhugsandlaughter.Ican’twaituntilnextyearinDenverwhenI’llseemynewfriends....
Iwassotouchedbythemany“supporters”whoalsoattended.Therewerespouses,friendsandsiblingsallactivelyengaged.Butitwasthemanyparentswhocametosupportandbetherefortheirchildrenthatmademethehappiest.Itissoeasytothinkthatsomeonewithnarcolepsyisreallylying,faking,andisjustplainlazyespeciallywhenyou’reateenager.Kudostoallthoseparentswhobelieveandbelieveintheirchildren.
Ialsolearnedsomuchaboutnarcolepsy,ongoingresearchandmyself.Forexample,whenIwasateenagerIcouldn’tunderstandwhymyparentseveryfewmonthswouldhavemetestedforeithermononucleosisorathyroidcondition.WellmuchtomysurpriseIlearnedduringadiscussionsomanypeoplewentthroughthesameexperience.Assillyasthatmaysoundlearningthatformewasamajorwowmoment.
ProbablythemostimportantthingIlearnedisthatI’mreallynotalone....ThankyouNarcolepsyNetwork!!!
(Bythewaythehotelwaslovely,thefoodwasgreat,thespeakerswereawesomeandthediscussionsinterestingandinformative...andIhadsomuchfun!!!)
Some of the Swinging for Sleep posters designed at the conference.
Overall,itwasagreatconference,withlotstoofferfortheyoungerset—theonlyproblemwaspickingone,andthenfindingenoughtimebetweensessionstosocialize.
Thankstoeveryonewhohelpedmaketheyouth-centricactivitiesatthe2013Conferencesuchasuccess.Hopetoseeyounextyear!
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Highlights from the Keynote Address continued from page 1
InadditiontoNarcolepsyType1and2,thenewICSD-3alsoincludesIdiopathicHypersomnia,Kleine-levinSyndrome,hypersomniaduetoamedical,psychiatricdisorderormedications,andbehaviorally-inducedinsufficientsleepsyndromeinitslistingofHypersomniaDisorders.
Conference-Goers Hear the Latest in Narcolepsy Research continued from page 6
calledHLADQB1*0602,buthavingthegenedoesnotmeanyouwilldevelopnarcolepsy.Anestimated12-38percentofthegeneralpopulationcarriesthisgeneanddoesnothaveandwillnotgetnarcolepsy.
“Butthereareenvironmentalissuesthatareverysignificantifyouhavethegeneticpredispositiontohavenarcolepsy.”
OneprovenenvironmentalfactorisexposuretoH1N1flu(swineflu)whichwasapandemicin2009.Datafrom
Europe,China,andNorthAmericashowsanincreaseinnarcolepsycasesfollowingexposuretoeitherthefluitselforaspecificvaccinecalledPandemrix,whichwasusedinEurope.StudiesinFrance,CanadaandtheUSshowedthatallpatientswhoabruptlydevelopednarcolepsyafteranH1N1vaccinationhadtheHLADQB1*0602gene.
Exposuretostreptococcalinfection(strepthroat)isanotherstrongenvironmentalfactorthatcantriggernarcolepsy.
BoththeDSM-5andtheICSD-3alsoincludedifferentcriteriafornarcolepsyinchildren.
Whilediagnosticcriteriahavechanged,advancesinresearchandtreatmentaremovingforward,andDr.Thorpysaysthefuturelooksverybright.
ICSD-3 criteria for a diagnosis of narcolepsy
Narcolepsy With Cataplexy1.Excessivesleepinessfor3months
2.Atleast1ofthefollowing:
• Cataplexy,andaMSLTtestwithameansleeplatencyoflessthaneightminutesandtwosleeponsetREMperiods.
• Cerbrospinalfluidhypocretin-1levelslessthan110pg/mlandaMSLTtestwithameansleeplatencyoflessthaneightminutesandtwosleeponsetREMperiods
Narcolepsy Without CataplexyPositivepolysomnography/multiplesleeplatencytestsaremet(meansleeplatencyoflessthaneightminutesandtwosleeponsetREMperiods)butnocataplexyispresent
DSM-5 criteria for the level of narcolepsy severity
Mild• infrequentcataplexy
• needfornapsonlyonceortwiceperday
• lessdisturbednocturnalsleep
Moderate
• cataplexyoncedailyoreveryfewdays
• disturbednocturnalsleep
• needformultiplenapsdaily
Severe
• drug-resistantcataplexywithmultipleattacksdaily
• nearlyconstantsleepiness
• disturbednocturnalsleep
The DSM-5 Criteria for Narcolepsy
UndertheDSM-5’sdiagnosticcriteriaapatientmusthave:
1. Recurrentperiodsofanirrepressibleneedtosleep,lapsingintosleep,ornappingoccurringwithinthesamedayoccurringatleastthreetimesperweekoverthepastthreemonths
2. Thepresenceofatleastoneofthefollowing:
• episodesofcataplexy,hypocretindeficiency
• nighttimesleeptestshowingREMsleeplatencylessthanorequalto15minutes,oramultiplesleeplatencytestshowingameansleeplatencylessthanorequalto8minutesandtwoormoresleep-onsetREMperiods.
ThorpynotedthatunderDSM-5criteria,cataplexymustbetriggeredbylaughingorjoking.
Someresearchshowsthatexposuretoenvironmentaltoxinssuchassecondhandsmokeandinsecticidescanbeassociatedwithnarcolepsy,butthesefindings,Swicksays,“areonfarshakiergroundtoknowwhetherthereisatruecauseandeffect.”
Inlightofthesestudies,Swicksays,it’sbothnatureandtheenvironmentthatcontributetotheonsetofnarcolepsyinthosewhohavethegene.
ThebiggestchangeinrecentyearsisXyrem’smovefromathirdlinetreatmenttothefirstlineoftreatmentfornarcolepsy.Thisisbecauseitistheonlydrugthatwilltreatallnarcolepsysymptoms.
Inthefuture,orexingenetherapyandtreatmentsthattargetthehistaminergicsystem,bothofwhicharecurrentlybeingstudied,couldmakedramaticdifferencesinthetreatmentofnarcolepsy,Thorpysaid.
Narcolepsy in Words and Drawings
Books for Kids of All AgesDidyourhandevercomealiveandstarttalkingtoyou?Whatwouldyousaytoyourhandifitdid?ThisisexactlywhathappenedtoNicoleCortichiato.Shewas16,notdiagnosedyet,whenshestartedhavinghypnagogichallucinations.Sheturnedthatexperienceintoherfirstbook, “The Independent Hand.” Shehasfolloweditupwithanotherbook,“What Kind of Bunny Ears Do You Have?”Nicoleisinspiredbyhernarcolepsyandletsthecreativityflowfromallhercrazydreams.Shehopestoinspireotherstousetheirnarcolepsyasatooltocreate.FindmoreaboutNicoleandherbooksatwww.imagineart.net/nicole-cortichiato-gallery.
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News from PWNs
Nicole Jeray recognized for community serviceCongratulationstoLPGAgolferNicoleJeraywhowasnominatedforthe2013KIACommunityAssistAward.TheawardrecognizestheLPGAplayerwhohadmadeanexceptionalcontributiontoanonprofitorganization
Editor’s note: Anna Tyler is 11 years old and lives in East New Market, MD. She wrote this essay for school, and her mom Barb shared it with NN. Thanks to Anna and Barb for allowing us to share it with you.
“Problemsarenotstopsignstheyareguidelines.”Said,RobertH.Schuller.Gettingadaytimesleepdisordermaybeacurse,thatnevergoesaway;butnowIthinkthatI
amblessed.Withnarcolepsyitmakesmewanttosharemystoryaboutgettingitwithyou,hopingitwillinspireyou,andIwillinspireyou.Iwishtoonedaybeabletogetthewordouttoawholelotofpeople.
Fallingasleepinclassandhavingyourteacherwakeyouupisveryembarrassing;especiallywhenit’sduringatestandyourteacherusedtobeyourbabysitter.Ifeltsotiredandexhausted,Ididn’tknowwhy.Iwenttobedontimeandfellasleepfast.Stillveryexhausted,tiredandstartingtodozeoff,thebellrings,wakingmeupandscaringmeoutofmysocks!MyHeartbeatingfast,Istartedrushingtogetmythingspackedupandreadytogo.Iwasrushingdownthehallasacutelittlefirstgraderthatisjustaboutgettingtrampledonbybigkids,withlonglegsandmeanlookingfaces.Ifinallymadeittothebus,butassoonasthebusstartedmovingIdozedoffagain.Almostmakingmemissmystop,justintime,Iwokeupbeforethebusdoorsclosedandrantogetoff.
Walkinginthehouse,mymomissittingatthekitchentableandsheasks,“Howwasschooltoday?”
Ireplied,“Idon’treallyremember,butIfellasleepalotinclasstoday.”Mom
SolomonBriggsreleasedhisfirstbook,Expressions of My Own Narcolepsy With CataplexyinOctober.Briggsshareshispersonalexperiencesthroughhishand-drawnillustrationsandtextaboutlivingwithnarcolepsywithcataplexy.Thebookalsoincludesdetailedinformationaboutnarcolepsy.The60pagebookisavailablefromAmazon.com.
Narcolepsy byAnnaTyler
orprogramthroughouttheseason.AsanarcolepsyadvocateNicoleraisesawarenessthroughherworkonandoffthecourse.Nicolewasoneofnineplayersnominatedandalthoughshedidn’twintheawardthisyear,sheisalwaysawinnerinoureyes.Great work, Nicole!
madeanappointmentwithmydoctor;whosuggestedasleepstudy.
Asleepstudydidn’tsoundbadtome.TomeallIheardwasthewordsleep,outofthat.SoitturnsoutIwaswrong.Ihadtotakeshortnaps,andthentheywokemeup,eventhoughIwantedtogobacktosleep.Ihadwiresallovermybodyandmyhairhadgooinitwitharapcoveringit.Ifeltsotiredandmyeyeswerebloodshot.
Thenarcolepsyhadaneffectonmethatchangedmymood,it’scalledmoodswings.ThischangedtherelationshipbetweenmymomandI.Iwouldgetmeanwithmymomandsometimesyellatherandmakehercry.Butwealwaysmadeup.Eventhoughitsometimesmadeusfaraway,othertimesitmadeuscloser.
Threeyearslater.ItwasaFridayandmymomwasofffromwork.Iwasinclassatschool,whenIgotcalledtothemainofficeallpackedandreadytoleave.Mymomwastherewaitingforme,shehadabigsmileonherfacebutlookedlikeshehadbeencrying.Igotinthecarandaskedher,”Whydidyoupickmeupfromschoolearly?”
Sheshoutedrelief,“Wehaveananswer;youhavenarcolepsy!”
SofarinmylifethedaythatmymomandIgotananswertowhatwasmakingmesotiredisthebestdayandmomentofmylife.IamcurrentlystillhavingalittletroublewithmymoodswingsthatIsometimestakeoutonmymomanddad.Mymom,dadandIaretryingtogetthroughthisstruggletogether.IhavefeltthatwhatRobertH.Schullerhassaidhashadaneffectonme.HavingnarcolepsyispartofGod’splanformeinmyadventureinlifethatisjustgettingstarted.
Mark Your Calendars For Narcolepsy Awareness Day! Saturday,March8,2014isNarcolepsyAwarenessDay,alsoknownasSuddenlySleepySaturday.Onceagainthisyear,NNwillusethedaytohelpraiseawarenessofnarcolepsy.OneofthebestwaystoincreaseawarenessistohaveyourcityorstaterecognizeMarch8NarcolepsyAwarenessDaywithanofficialproclamation.Visitwww.narcolepsynetwork.orgformoreinformationonhowtoproclaimthedayinyourcityorstate.
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MEDICAL ADVISORY BOARD
Emmanuel Mignot, MD, PhD, ChairStanfordCenterforNarcolepsyPaloAlto,CA
Stephen A. Amira, PhDBrookline,MA
Neil Feldman, MDSt.Petersburg,FL
Meeta Goswami, MPH, PhDNarcolepsyInstituteBronx,NY
Lois Krahn, MDMayoClinicScottsdale,AZ
J. Gila Lindsley, PhDLexington,MA
Quentin Regestein, MDBrigham&Women’sHospitalBoston,MA
David B. Rye, MD, PhDEmoryUniversitySchoolofMedicineAtlanta,GA
Thomas E. Scammell, MDBethIsraelDeaconnessMedicalCenterBoston,MA
Lawrence Scrima, PhDSleep-AlertnessDisordersCenter,Inc.Aurora,CO
Jerome Siegel, PhDUCLANeurobiologyResearchSepulveda,CA
Todd J. Swick, MDHoustonSleep&NeurologyAssociatesHouston,TX
Michael J. Thorpy, MDSleep-WakeDisordersCenterBronx,NY
PEDIATRIC ADVISORY BOARD
Agnes Kenny, MDPeru,IN
Suresh Kotagal, MDRochester,MN
Suzanne Moore-DarmsMarlton,NJ
Michael Eig, EsqChevyChase,MD
Mali EinenMenloPark,CA
Michele ProfetaAtlanta,GA
The Network thanks Jazz Pharmaceuticals and
Teva Pharmaceuticals for an unrestricted grant that has partially
funded graphic design, printing, mailing, and other
costs of publishing and distributing this issue.
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BOARD OF TRUSTEES
Sara Kowalczyk, MA, MPHPresidentBoston,[email protected]
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On the Back Cover
CreativeCornerArtist,JeanZack
HimynameisJeanZackandIamamemberofNarcolepsyNetwork.IwantedtosubmitthispoemintotheCreativeCorner.IwroteitthedayafterIexperiencedcataplexyatwork.IamaSpecialEducationTeacheratanelementaryschool.Thecataplexyoccurredattheendofthedayduringbusduty.Itfeltveryscarytome.
EditorKarenRorie
forwarding service requested — return postage paid
NarcolepsyNetwork,INC.129WATERWHEELLANENORTHKINGSTOWN,RI02852
Creative Corner
Feelingweak,Istarttosink.Ihopethatitwillstop.butpeopleseeandrushtome,althoughIcannottalk.
TheygetmeadrinkandsitmedownbeforeIstarttofall.Theytalktome,Icannotspeak,althoughIhearthemall.Isitawhileasthefeelingfades,Ilookatthepeopleandsay“that I’m OK”.
WhenI’maloneIstarttothink,asIdryawaymytears.Iwishthatthiscataplexywouldgoaway,formany,manyyears.
CATAPLEXYbyJeanZack
