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40 Pages·2012·3.11 MB·English

28TH ANNUAL CONFERENCE
AUGUST 2–5 | 2012 | CHICAGO, IL
Hosted by Northwestern Medicine® and
Ann & Robert H. Lurie Children’s Hospital of Chicago
PROGRAM

TABLE OF CONTENTS
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Welcome Message 2
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Conference Schedule At-a-Glance 3
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Program for Children 4
Program for Teens 5
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Program for Young Adults 6
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General Session 7
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Conference Workshops 8–16
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Saturday Schedule & Room Assignments 8
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Sunday Schedule & Room Assignments 9
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Workshop Descriptions Saturday Session 1 10
Workshop Descriptions Saturday Session 2 11 C
Workshop Descriptions Saturday Session 3 12 O
Workshop Descriptions Sunday Session 4 13
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Workshop Descriptions Sunday Session 5 14
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Workshop Descriptions Sunday Session 6 15
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Teen Workshop Descriptions 16
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Conference Presenters 17–31
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Acknowledgements 32
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NMF Chapters & Network Groups 33
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NMF Boards 34
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NMF Mission 35
Map of Locations 36 1
W E LCO M E
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OnbehalfofeveryoneattheNationalMarfanFoundation,wearethrilled
N towelcomeyoutoour28thAnnualConference!
Morethan350adultshaveregisteredforthisyear’sconference, alongwith
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210childrenandteens—morethaneverbefore. Becauseofourgenerous
donors,wewereabletoawardtwiceasmanyscholarshipsaslastyear.
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Whileweareexcitedtoseemanyofouroldfriendshere, weareequally
excitedtomeetthenewfolkswhoarejoiningusforthefirsttime.Youwill
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seethatthefriendshipsyouwillmakethisweekend arepricelessandwill
continuethroughouttheyear.
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We know you are here for medical information and we can assure you
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that youwilllearnsomethingnewthisweekend, whetherthisisyourfirst
conference or your twenty-first. In addition to standard workshops that
O weoffereveryyear,welistenedtoyourfeedbackandareofferingnew
workshopsonvarioussubjectsincludingmanagingstress,handlingdiagnosis,
andpreparingchildrenforsurgery.And,amongthe64workshopsarespecialtracksforyoung
C
adultsandteens.
Notonlydowehaveourlargestconferencetodate,butwealsohaveourlargestpatientevaluation
L clinictodate.Ourhostinstitutionsscheduledmorethan300individualmedicalappointmentsfor
conferenceattendeeswhomaynothaveaccesstospecialistsonMarfansyndromeandrelateddisorders
A athome.Wearethrilledtoofferyouthisopportunitytogetthediagnosisandtreatmentguidance
youneedandbringhomewithyouadvicefromthecountry’sleadingexpertsontheseconditions.
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Manyoftheseexpertswillbespeakingatourgeneralsessionandleadingworkshopsthroughout
theweekend.Weencourageyoutosoakupasmuchinformationasyoucanintheformalsessions,
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inthesmallgroupbreakoutsandevenatcoffeebreaks. Our medicalexpertswanttomeetyou
andhelpyouonyourmedicaljourney.
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OnbehalfoftheBoard ofDirectors,wewouldliketoextendoursincerestgratitudetoallofthe
A people,organizationsandinstitutionswhohavecontributedtothisyear’sconference:ourgracious
hosts,NorthwesternMedicine®andAnn&RobertH.LurieChildren’sHospitalofChicago;our
esteemedProfessionalAdvisoryBoard;ourskilledandknowledgeableworkshoppresentersand
generalsessionspeakers;ourLivingSuccessfullypanelists;volunteersfrom ourNorthernIllinois
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ChapterandParamountTallClub;andphotographersTimJoyceandRickGuidotti.
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WehopeyouenjoyChicagoand,mostofall,wehopeyouenjoyyour“Marf-family.”Thiscon-
ferenceisthehighlightoftheyear foreveryoneattheNationalMarfanFoundationandwehope
itwillbeoneforyoutoo!
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RaymondChevallier CarolynLevering
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NMFChair NMFPresident&CEO
CONFERENCE SCHEDULE
AT- A - G L A N C E
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Unless indicated otherwise, all locations listed below are at Northwestern Memorial
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Hospital (NMH), 675 North St. Clair Street. See map on page 36.
THURSDAY|AUGUST2
A
Byindividual appointment Ann&RobertH.Lurie PatientAssessments
Children'sHospital ofChicago
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FRIDAY|AUGUST3
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Byindividual appointment NMH,19thFloor PatientAssessments
(GalterPavilion)
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9:00AM–4:00PM AllertonHotel,MichiganRoom, NVN LeadershipTraining
23rdFloor
A
12:00NOON–6:00PM NMH,3rdFloor Registration
(GalterPavilion)
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6:00 –7:00PM NavyPier WelcomeReception
7:00 –8:30PM NavyPier Dinner&AwardsCeremony
C
8:30–10:00PM NavyPier SocialTime
O
SATURDAY|AUGUST4
7:00 –11:00AM NMH,3rdFloor Registration
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(FeinbergPavilion)
8:30AM –12:00NOON NMH,3rdFl.(FeinbergPavilion) GeneralSession
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Conf.RoomA&
PritzkerAuditorium
E
12:00NOON–5:00PM NMF,3rdFloor, HealthLearningCenter
GalterRoom3-304 OpentoVisitors
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12:00NOON–1:00PM NMH,3rdFloor Lunch
Conf.RoomA&Atrium
E
1:30–5:00PM Seepage8 MedicalWorkshops
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SUNDAY|AUGUST5
7:00–9:00AM NMH,3rdFloor Registration C
(FeinbergPavilion)
8:30AM–12:00NOON Seepage9 PsychosocialWorkshops E
12:00NOON–12:45PM NMF,3rdFloor BoxLunch
12:45–2:30PM NMH,3rdFloor VolunteerAwardsandLiving
3
ConferenceRoom ABCD SuccessfullyClosingPanel
PROGRAM FOR CHILDREN
AGES 5–12
E
FRIDAY|AUGUST3
C
AllFridaychildren’sactivitiestakeplaceatNavyPier
6:00–7:00PM WelcomeReception(AllConferenceAttendees)
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GrandBallroom BustransportationfromtheAllertonHotelandInnofChicagois
availablestartingat4:30PM.
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7:00–8:30PM Children’sDinner&Getting-to-Know-YouGames
Room201–203 Childrenwillplaygameswhiletheirparentsattendtheawardsdinner.
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8:30–10:00PM SocialTime(AllConferenceAttendees)
GrandBallroom Childrenshouldbepickedupaftertheawardsdinnerandallmaystay
andsocialize.Buseswillbeavailabletoreturntothehotelsbeginning
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at8:30PM;thelastbuswilldepartNavyPierat10:00PM.
F SATURDAY|AUGUST4 IMPORTANT:ChildrenmustweartheirconferenceT-shirtandname
tagandbringtheirbackpackforallSaturdayevents!
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8:00AM DropOff
AllertonHotel,3rdFloor Allchildrengoingonthefieldtripsmustbedroppedoffatthe
FrankLloydWrightRoom AllertonHotelby8:00AMtobegroupedwiththeirchaperones.
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9:00AM–1:30PM FieldTripandLunch:MuseumofScienceandIndustry
MuseumofScience Childrenwillexplorethemuseum,visitthegeneticsexhibit,which
C andIndustry includesaplaquewithinformationonMarfansyndrome,and
participateinaMythbustersworkshop.Lunchwillbeprovided.
1:30–5:00PM FieldTrip:SheddAquarium
L SheddAquarium Childrenwillexploretheexhibitsattheaquariumincludingspecial
exhibitsandshowsarrangedjustforourgroup.
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5:00–5:30PM PickUp
AllertonHotel,3rdFloor BuseswillreturnchildrentotheAllertonHotel.Parentsshouldpickup
FrankLloydWrightRoom theirchildrenpromptlyaftertheirworkshops.
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SUNDAY|AUGUST5
AllSundaychildren’sactivitiestakeplaceatAnn&RobertH.LurieChildren’sHospitalofChicago
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8:00AM DropOff
Allchildrenmustbedroppedoffby8:00AMintheHospitalLobby
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neartheLargeWhalelandmark.
8:30–9:30AM KidsQ&A
A MarfansyndromeandrelateddisordersexpertDr.PhilipGiampietro
andgeneticcounselorLibbySparkswillgiveshortpresentations
followedbyaQ&Atochildrenintwogroups,9–12yearoldsand5–8
yearolds,respectively.
F
9:30AM–12:30PM ActivitiesprovidedbyAroundtheTownEntertainment
Childrenwillbedividedintogroupsbyageandenjoyentertainments
M includingamagicshow,aballoonartist,facepainting,andcreating
theirownteddybearswithNoah’sArkAnimalWorkshop.
N 12:30PM–2:00PM LunchandArts&CraftsandMovieTime
Childrenenjoylunch,watchanage-appropriatemovie,anddoarts
andcrafts.
2:00PM PickUp
NMH,3rdFloor ChildrenwillbeescortedtomeettheirparentsattheVolunteer
4
ConferenceRoomABCD AwardsandClosingPanel.
PROGRAM FOR TEENS
AGES 13–18
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FRIDAY |AUGUST 3
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4:30–5:30PM Welcome&Orientation
AllertonHotel,23rdFloor OpeningProgrampresentedbytheNMFTeenCouncil,afterwhich
Ballroom teenswillboardbusestomeettheirparentsatNavyPier.
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6:00–7:00PM WelcomeReception(AllConferenceAttendees)
NavyPier
7:00–8:15PM TeenDinner&SpeedConnection
NavyPier,Room204–207 Teensenjoydinnerandthenplay“SpeedConnection,”wherefive A
minutescanleadtoalife-longfriendship.
8:15–8:45PM PositiveExposure:ThePEARLSProject
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NavyPier,Room204–207 RickGuidottiwillpresentanexcitingawarenessopportunity.
8:45–9:30PM DessertwithDr.Dietz
NavyPier,Room204–207 ResearchupdateandQ&AwithDr.HalDietz. N
9:30–11:00PM GenderBreakOutSessions
NavyPier,Rooms204–207 Teenswillbreakintogroupsbygendertodiscussfeelings,thoughtsand
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and201–203 issuesaboutlivingwithMarfansyndromeandrelateddisorders.
11:00PM DepartNavyPier
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NavyPier SpecialbusesforteenswilldepartNavyPierat11:00PMandmake
stopsathotels.Parentsshouldmeetteensintheirhotellobby.
SATURDAY|AUGUST4 IMPORTANT:TeensmustweartheirconferenceT-shirtandnametag L
forallSaturdayevents!
7:30–8:00AM Check-In
AllertonHotel,3rdFloor Allteensmustcheck-inattheAllertonHotel’sBuckinghamBallroom
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BuckinghamBallroom onthethirdfloor,afterwhichtheywillboardbusesforUnionStation
promptlyat8:00AM.
8:00AM–5:00PM MurderMysteryTrain O
Milwaukee! TeenswillboardanAmtraktrainforaround-tripridetoMilwaukee
andmurdermysterytour.Lunchwillbeserved.
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5:00–5:30PM PickUp
AllertonHotel,3rdFloor BuseswillreturnteenstotheAllertonHotelat5:00PM.Parentsmust
BuckinghamBallroom meetteensaftertheirworkshopsfordinnerontheirown.
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8:00–11:00PM TeenDance&Games
TheInnofChicagoBallroom Dancetomusicofyourchoice,playboardgames,cardsandsocialize.
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11:00PM PickUp
TheInnofChicagoBallroom ParentsmustmeetteensattheInnofChicagoBallroom.
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SUNDAY|AUGUST5
AllSundayteenactivitiestakeplaceatAnn&RobertH.LurieChildren’sHospitalofChicago
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8:00AM Check-In
Allteensmustcheckinby8:00AMintheHospitalLobbynearthe
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LargeWhalelandmark.
8:30–9:15AM TeenWorkshopsSession1Seepage16forchoices.
C
9:30–10:15AM TeenWorkshopsSession2Seepage16forchoices.
10:30AM–2:00PM TeenActivities&Lunch E
Teenscangetairbrushtattoos,caricatures,and/orcreatetheirown
t-shirt,followedby“Bells&Whistles”gameshowandlunch.
2:00PM MeetUp
NMH,3rdFloor TeenswilljoinadultsfortheconclusionoftheVolunteerAwardsand 5
ConferenceRoomABCD ClosingPanel.
PROGRAM FOR YOUNG ADULTS
AGES 19–25
E
FRIDAY|AUGUST3
C
6:00–7:00PM WelcomeReception(AllConferenceAttendees)
NavyPier BustransportationfromtheAllertonHotelandInnofChicagois
N availablestartingat4:30PM.
7:00–8:30PM DinnerandAwardsCeremony
NavyPier
E
8:30–10:00PM SocialTime (AllConferenceAttendees)
NavyPier Buseswillbeavailabletoreturntothehotelsbeginningat8:30PM;
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thelastbuswilldepartNavyPierat10:00PM.
SATURDAY|AUGUST4
E
8:30AM–12:00NOON GeneralSession
NMH,3rdFloor(Feinberg Seepage7
F
Pavilion)Conf.RoomA&
PritzkerAuditorium
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12:00NOON–1:00PM Lunch
NMH,3rdFloor
Conf.RoomA&Atrium
O
1:30–5:00PM MedicalWorkshops
Seepage8 AspecialworkshoptrackisbeingofferedforYoungAdultProgram
forlocations participants.Whiletheseworkshopsareonlyopentothosewhohave
C
registeredfortheYoungAdultProgram,youngadultsarewelcometo
attendanyoftheadultworkshopslistedonpages8–16.Thefollowing
YoungAdultTrackworkshopsaredescribedonpages10–12:
K1 TransitioningtoAdultCare
L K2 PlanningaFamily:PreimplantationGenetics,GeneticDiagnosis,
Adoption
K3 AskYourMedicalQuestions
A
5:30PMSHARP MeetUp
AllertonHotelLobby MeetintheAllertonHotelLobbyfortransporationtodinnervenue.
U Note:Youmusthaveregisteredinadvanceforthistriptoattend.
6:00–8:00PM DinneratEdDebevic’s
EdDebevic’s DinneratEdDebevic’s,araucus1950’sthemeddinerandChicago
N
institution.BustransportationbacktotheNavyPierisprovided.
8:00–11:00PM TallShipWindyFireworksCruise
N LakeMichigan BackatNavyPier,boardtheTallShipWindytosetsailforafireworks
displayandspectactularviews.
Buseswillbeavailabletoreturntothehotelsat11:00PM.
A
SUNDAY|AUGUST5
8:30AM–12:00NOON PsychosocialWorkshops
Seepages9 AspecialworkshoptrackisbeingofferedforYoungAdultProgram
forlocations participants.Whiletheseworkshopsareonlyopentothosewhohave
F
registeredfortheYoungAdultProgram,youngadultsarewelcometo
attendanyoftheadultworkshoplistedonpages8–16.Thefollowing
YoungAdultTrackworkshopsaredescribedonpage13–15:
M
G4 CommunicatingAboutYourDiagnosistoFamilyandFriends
G5 FacingYourFears
G6 SupportGroupforYoungAdults
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12:00Noon–12:45PM BoxLunch
NMH,3rdFloor
12:45–2:30PM VolunteerAwardsandLivingSuccessfullyClosingPanel
NMH,3rdFloor
6 ConferenceRoomABCD
G E N E R A L S E SS I O N
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Northwestern Memorial Hospital | 3rd Floor | Conference Room A & Pritzker Auditorium
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Part 1 Moderator S.ChrisMalaisrie,MD
AssistantProfessorofSurgery,FeinbergSchoolofMedicine
NorthwesternUniversity F
8:30–8:45AM Welcome OpeningRemarks
JosephineGrima,PhD A
VicePresidentofResearchandLegislativeAffairs,
NationalMarfanFoundation
N
8:45–9:10AM Session1 UpdateonOrthopedicManagement
PaulSponseller,MD,MBA
Chief,DivisionofPediatricOrthopaedicsandProfessorof N
OrthopaedicSurgery,JohnsHopkinsHospital
U
9:10–9:35AM Session2 UpdateonOcularManagement
IreneMaumenee,MD
Director,OphthalmicGenetics,IllinoisEye&EarInfirmary, A
UniversityofIllinoisatChicago
L
9:35–10:00AM Session3 ResearchUpdateforThoracicAorticDisease
DiannaM.Milewicz,MD,PhD
PresidentGeorgeH.W.BushChairinCardiovascular
Medicine,UniversityofTexasHealthScienceCenter
C
10:00–10:15AM Q&A
O
10:15–10:30AM Break
N
Part 2 Moderator LucianaT.Young,MD
AssociateProfessorofPediatrics,FeinbergSchoolof
Medicine,NorthwesternUniversity F
10:30–10:55AM Session4 UpdateonCardiacManagement E
AlanC.Braverman,MD,FACC
Director,MarfanSyndromeClinicatWashingtonUniversity
R
andChief-of-ServiceforInpatientCardiologyatBarnes-
JewishHospital
E
10:55–11:20AM Session5 UpdateonCardiacSurgery
S.ChrisMalaisrie,MD
N
AssistantProfessorofSurgery,FeinbergSchoolofMedicine,
NorthwesternUniversity
C
11:20AM–11:45AM Session6 ResearchUpdate
HalDietz,MD
VictorA.McKusickProfessorofGeneticsatJohnsHopkins E
SchoolofMedicineandInvestigatoratHowardHughes
MedicalInstitute
11:45AM–12:00Noon Q&A 
SATURDAY MEDICAL WORKSHOPS
E Session1 1:30–2:30PM Session2 2:45–3:45PM Session3 4:00–5:00 PM
A A1 PritzkerAuditorium A2 ConferenceRoomA A3 ConferenceRoomB
C Marfan101 GrowingOlderwithMarfan GeneticTestingLimits/
JessicaA.Bucher,MS,CGC Syndrome BenefitsinDiagnosis
PhilipF.Giampietro,MD,PhD PhilipF.Giampietro,MD,PhD JessicaA.Bucher,MS,CGC
N HalC.Dietz,MD
B B1 ConferenceRoomA B2 ConferenceRoomD B3 ConferenceRoomA
OrthopedicIssues PediatricOrthopedicIssues Non-surgicalApproachesto
E SaraL.Edwards,MD PaulD.Sponseller,MD,MBA DuralEctasiaandBackPain
PaulD.Sponseller,MD,MBA TordD.Alden,MD
PaulD.Sponseller,MD,MBA
R
C C1 ConferenceRoomF C2 2ndFloor,FeinbergRm2-715 C3 ConferenceRoomC
PediatricCardiacIssues PediatricCardiacIssues AorticSurgeryinChildren
E ElizabethS.Cappella,MSN,CPNP HalC.Dietz,MD andTeens
R.AndrewdeFreitas,MD R.AndrewdeFreitas,MD DukeE.Cameron,MD
RonaldV.Lacro,MD LucianaT.Young,MD HydeM.Russell,MD
F
D D1 ConferenceRoomD D2 ConferenceRoomF D3 ConferenceRoomE
PediatricIssues CardiacImagingandRadiology: VascularSurgery:Aneurysms
MarkE.Lindsay,MD,PhD UnderstandingYourImaging AffectingVesselsOtherthan
N
StudiesandZ-score theAscendingAorta
RichardB.Devereux,MD JosephS.Coselli,MD
MarkK.Eskandari,MD
O
E E1 ConferenceRoomB E2 ConferenceRoomC E3 2ndFloor,FeinbergRm2-716
CardiacIssues PostDissectionCardiac CardiacIssues
RichardB.Devereux,MD Concerns AlanBraverman,MD,FACC
C
MarlaA.Mendelson,MD MarkE.Lindsay,MD,PhD DavidJ.Mehlman,MD
RobertA.Silverberg,MD
F F1 2ndFloor,FeinbergRm2-715 F2 ConferenceRoomE F3 ConferenceRoomF
AorticSurgeryOptions Pre-conception,Pregnancy PlanningaFamily:
L
JosephS.Coselli,MD andPostpartumCardio- PreimplantationGenetics,
D.CraigMiller,MD vascularManagementand GeneticDiagnosis,Adoption
A HydeM.Russell,MD RelatedIssues PeterH.Byers,MD
AlanBraverman,MD
MarlaA.Mendelson,MD
U
G G1 ConferenceRoomE G2 ConferenceRoomB G3 2ndFloor,FeinbergRm2-715
DentalIssues OcularIssues,General OcularCorrectionsandVisual
SylviaFrazier-Bowers,DDS,PhD IreneH.Maumenee,MD Rehabilitations
N MarilynB.Mets,MD IreneH.Maumenee,MD
MarilynB.Mets,MD
H H1 ConferenceRoomC H2 2ndFloor,FeinbergRm2-716 H3 ConferenceRoomD
N
PectusManagement PainManagement SleepApnea
MarletaReynolds,MD DavidR.Walega,MD SusannaA.McColley,MD
EnidNeptune,MD
A
I I1 3rdFloor,GalterRm3-304 I2 3rdFloor,GalterRm3-304 I3 3rdFloor,GalterRm3-304
Loeys-DietzSyndrome101 Loeys-DietzSyndrome: RelatedDisorders101
AlanBraverman,MD,FACC CardiacSurgery LisaDellefave-Castillo,MS,CGC
GretchenOswald,MS,CGC DukeE.Cameron,MD DiannaM.Milewicz,MD,PhD
F HydeM.Russell,MD
J J1 2ndFloor,FeinbergRm2-716 J2 PritzkerAuditorium J3 PritzkerAuditorium
PulmonaryIssues ExerciseandStayingFit EatingtoReducePainand
M
SusannaA.McColley,MD ElizabethS.Cappella,MSN,CPNP IncreaseEnergy
EnidNeptune,MD RonaldV.Lacro,MD BriannaMoulton,CHHC,CMP
K K1 Atrium(GaltersideNWcorner) K2 Atrium(GaltersideNWcorner) K3 Atrium(GaltersideNWcorner)
N
YOUNGADULTTRACK YOUNGADULTTRACK YOUNGADULTTRACK
TransitioningtoAdultCare PlanningaFamily: AskYourMedicalQuestions
ParagK.Shah,MD,MPH PreimplantationGenetics, HeidiM.Connolly,MD,FACC
MichaelN.Singh,MD GeneticDiagnosis,Adoption MarkE.Lindsay,MD,PhD
JessicaA.Bucher,MS,CGC MichaelN.Singh,MD
8 DiannaM.Milewicz,MD,PhD
YoungAdultTrack(K)workshopsopentoages19–25only.