the network · narcolepsy into two types, type 1, narcolepsy with cataplexy, and type 2, narcolepsy...

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,

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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.

11

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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narnet@narcolepsynetwork.orgwww.narcolepsynetwork.org

Thecontentsofthisnewsletterareforinformationalpurposesonlyandarenottobeconstruedasmedicalorlegaladvice.Ifyouhavequestions,pleaseconsultyourphysicianorattorney.

Thisnewsletterispublishedquarterlyasabenefitofmembership.NoportionofthisnewslettermaybereprintedforcommercialornoncommercialpurposeswithouttheadvancewrittenapprovalofNarcolepsyNetwork,Inc.Requestsforpermissiontoreprintshouldbedirectedto:

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BOARD OF TRUSTEES

Sara Kowalczyk, MA, MPHPresidentBoston,MAskowalczyk@narcolepsynetwork.org

Mee Warren, Vice PresidentNewYork,NYmwarren@narcolepsynetwork.org

Mark Patterson, MD, PhD, Vice PresidentRoanoke,VAmpatterson@narcolepsynetwork.org

Rahul Kakkar, MD, SecretaryPinehurst,NCrkakkar@narcolepsynetwork.org

Louise O’Connell, TreasurerWoburn,MAloconnell@narcolepsynetwork.org

Sarah DiDavideRiverGrove,ILsdidavide@narcolepsynetwork.org

Andrea Podolsky, JDNewYork,NYapodolsky@narcolepsynetwork.org

Suporn Sukpraprut, PhDLyndhurst,OHssukpraprut@narcolepsynetwork.org

Anthony Tam, PhDAmherst,MAatam@narcolepsynetwork.org

Trustee Emerita

Niss Ryan, FounderRochester,NY

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