Representatives from Narcolepsy Network joined hundreds of others from the narcolepsy community at the FDA’s public meeting on narcolepsy A Publication of Narcolepsy Network, Inc. Fourth Quarter 2013 1 continued on page 2 continued on page 9 2013 is the Biggest Conference Yet! THE NETWORK The 28 th annual Narcolepsy Network Conference in Atlanta was big! Big in size, with more than 400 PWNs and their supporters attending. Big in stature, with six of the narcolepsy world’s best researchers and doctors making presentations. Big in information, with more than 40 sessions. And big in fun and fellowship, with old friends reuniting, new friendships forming, and many people meeting other PWNs for the very first time. The conference kicked off Friday night with registration and the opening reception. Saturday started with breakfast, the keynote presentation by Dr. Michael Thorpy, and an update on narcolepsy research from Dr. Jerry Siegel. Conference-goers then headed to smaller presentations that matched their interests. Subjects ranged from succeeding in school with narcolepsy to research updates (turn to page 6 for more) to day-to-day living and support. On Sunday, attendees continued to attend small group sessions, then gathered for lunch and a research-focused presentation by Dr. Thomas Scammell. Throughout the weekend, attendees had the opportunity to browse the N[Art]: Narcolepsy Art exhibit featuring the work of more than 20 PWNs, and to meet authors and artists. As the conference wound down, old and new friends made plans to meet up again, either online or at our 2014 conference in Denver. More information on dates will be available soon. Narcolepsy Community Shines at FDA Public Meeting by Karen Rorie 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 drug development on September 24. Approximately 150 people attended the meeting in person at FDA headquarters is Silver Spring, MD, with nearly 700 more attending via an Internet webcast. Among the in-person audience, 67% had narcolepsy. FDA officials have described the strong response to the narcolepsy meeting as unprecedented. Perspectives shared at the meeting and through a public docket will provide the FDA with helpful insights when conducting benefit-risk assessments for new drugs to treat narcolepsy. Patient responses could also show the FDA Highlights from the Keynote Address Dr. Michael Thorpy, director of the Sleep- Wake Disorders Center at Montefiore Medical Center in New York City, was the keynote speaker in Atlanta. His presentation, Recent Advances in the Understanding of Narcolepsy, covered changes to the diagnostic criteria for narcolepsy, advances in research, and changes in treatment. In May 2013, the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was released. The new manual includes changes to the diagnostic criteria for narcolepsy and introduces levels of severity. In June 2013, the International Classification of Sleep Disorders Third Edition (ICSD-3) was released. It divides narcolepsy into two types, Type 1, Narcolepsy with Cataplexy, and Type 2, Narcolepsy without Cataplexy. that they need new ways to measure the effectiveness of treatments being reviewed. There were two main areas of discussion at the meeting: “disease symptoms and daily impacts that matter most to patients,” and “patients’ perspectives on current approaches to treating narcolepsy.”For each topic, a panel of five patients made prepared statements followed by a facilitated discussion with the live and online audiences. The meeting began with remarks from FDA officials who thanked the
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THE NETWORK · narcolepsy into two types, Type 1, Narcolepsy with Cataplexy, and Type 2, Narcolepsy without Cataplexy. that they need new ways to measure the eff ectiveness of treatments
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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.
It’s Time to Renew Your NN Membership! 2014isjustaroundthecorner,andwithitcomesanewmembershipyearatNarcolepsyNetwork.Asyoupreparetoturnthecalendarto2014,takeamomenttorenewyourNNmembershiptoo.
Dr. Goswami and her son after the award presentation in London.
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).
Soasyoucansee,yourorganizationiscontinuinginitsefforttoeducateandadvocateonyourbehalf.PleasedowhatyoucantosupportNarcolepsyNetworkinallitsactivities.Additionally,talktoyourmedicalprovidersandencouragethemtohelpeducatetheirpeers.Remember, we are all in this together!
Exciting New Drug Development for Narcolepsy continued from page 4
Ruth Justice Nebus Volunteer of the Year Award: Laura J. EvertLaurahasfilledmanyrolesincludingservingontheBoardofTrustees,providingartworkfortheCreativeCornersectionofourmembernewsletter,andpresentingsessionsatmanyconferences,includingthisyearwhenshepresented“FearNoArt:DreamSleepandCreativity.”ThisyearLauraalsocoordinatedtheartshowatourconferenceinAtlanta,andraisedmoneytosupporttheshowthroughanonlinefundraisingcampaign.
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.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.
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.
Narcolepsy Without CataplexyPositivepolysomnography/multiplesleeplatencytestsaremet(meansleeplatencyoflessthaneightminutesandtwosleeponsetREMperiods)butnocataplexyispresent
DSM-5 criteria for the level of narcolepsy severity
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.
SolomonBriggsreleasedhisfirstbook,Expressions of My Own Narcolepsy With CataplexyinOctober.Briggsshareshispersonalexperiencesthroughhishand-drawnillustrationsandtextaboutlivingwithnarcolepsywithcataplexy.Thebookalsoincludesdetailedinformationaboutnarcolepsy.The60pagebookisavailablefromAmazon.com.
Mark Your Calendars For Narcolepsy Awareness Day! Saturday,March8,2014isNarcolepsyAwarenessDay,alsoknownasSuddenlySleepySaturday.Onceagainthisyear,NNwillusethedaytohelpraiseawarenessofnarcolepsy.OneofthebestwaystoincreaseawarenessistohaveyourcityorstaterecognizeMarch8NarcolepsyAwarenessDaywithanofficialproclamation.Visitwww.narcolepsynetwork.orgformoreinformationonhowtoproclaimthedayinyourcityorstate.