NextStep’sFace2FaceConference

ReportJuly9–July12,2015

NextStep’sFace2FaceProgram

www.nextstepnet.org

Acknowledgments

ThisconferencereportwaspreparedbyGrahameMarpole,Face2FaceConferenceDirector.AnnaLaurenceandAliyaMoreirarecordeddatapresentedinthereport.ThephotosweretakenbyRomanaVysatova.

STAFF&VOLUNTEERS

Adeepheartfeltthankyoutoourincredibledonorsandsponsors.Thankyoualwaysforyourongoingsupportandgenerosity.Withoutyou,thisconferencewouldnotbepossible.The2015Face2FaceConferencemarksthefourthyearofthisamazingandevergrowingcommunity.Itissustainedbythehardwork,creativityandboundlessloveofmanyremarkableindividualsandinstitutions.OurcontinuedthanksgoestoMassachusettsGeneralHospital(MGH)forbelievinginourmissionandreliable,supportyearround.Asinyearspast,LorrieKubicek,anMGHemployee,playsaninstrumentalroleinthesuccessofFace2Face.Lorrieactsasabridgeforpatientsandfamiliesseekingknowledge,experienceandhealingbeyondthehospitalwalls.Lorrie’simpactontheFace2Facecommunitycanbefeltyearroundandweareallbetterforit.ThankyouLorrie.Face2Facewouldnotbepossiblewithouttheyear-roundsupportofNextStep’sstaff.Bill,Kepler,Jessica,Nancy,ColinandKimberly;thesuccessofFace2Faceisadirectresultofallyourtirelessefforts.Thankyouforallthatyoudo.ThankyoutoCaseyCasey,RN,ourdedicated,summernurseforkeepinguslaughing,safeandhealthy.ThankyoutoCrystalTaylor-Dietz,Psy.D,foryourknowledge,wraparoundsupportandforbeingintherightplaceattherighttime.AnenormousthanksgoestoNextStep’ssummerinterns,AnnaLaurenceandAliyaMoreira.Yourattentiontodetail,followthroughandwillingnessto“jumpallin,”wereamazingadditionstotheteam.Youcontinuetomakethemeaningfulconnectionsandhelpusalltoseewhythisworkissoimportant.KimberlyKhare,LorrieKubicekandaninspiringteamofmusictherapistscontinuetohelpouryouthexploreandcelebratetheircreativeselvesandfindtheirvoice-thankyoutoyouall.ForfourdaysinJuly,theFace2Facecommunitysmiles,learnsandlaughswiththehelpofanincrediblegroupofprogramvolunteers,ourdeepestthankstoeachofyou.

Ourthanksgoouttothenurses,socialworkers,physicians,childlifespecialists,dieticians,hospitalstaffandothercaringindividualswhomakethisconferenceapossibilityandasuccess.ThankyoutotheWarrenConferenceCenterandalltheirstaffforalwaysmakingourstayascomfortableaspossible.Finally,ourdeepestthanksgotothefamiliesandyouthparticipantsofthe2015Face2Faceconference.Yourcourage,yourwillingnesstoshareandtotrustinNextStepisthedrivingforcebehindtheFace2Faceprogram.Knowthatwhileyouarehelpingeachother,youarealsohelpingallthosewhocomeafteryou.

ContactInformationNextStepFund,Inc.99BishopAllenDriveCambridgeMA02139P:(617)864-2921F:(617)864-2931E:grahame@nextstepnet.orgwww.nextstepnet.org

BackgroundTheFace2FaceConferenceistheresultofcollaborationsbetweenNextStepstaff,interns,medicalproviders,community-supportprofessionalsandmostimportantly,theyoungmenandwomenwholiveshavebeendirectlyaffectedbycancer.TheYouthTaskForce(YTF)listened,askedquestionsandultimatelyhelpedtocreateaconferencetoservetheseyoungpeople’sspecificneeds.TheFace2FaceConferencecontinuestofollowamodeldevelopedbyNextStepthatisusedatconferencesservingyouthlivingwithHIV(OneLoveConference)andraregeneticdiseases(FaceForwardConference).ThehelpofMassachusettsGeneralHospital(MGH)andNextStep’sgenerousdonorsensurethecontinuedgrowthofNewEngland’sonlyyouth-ledconferenceforteensandyoungadultsimpactedbycancer.

YouthTaskForceTheYouthTaskForce(YTF)ismadeupofnewandreturningconferenceparticipantswhoplayadirectroleindefiningwhattheFace2FaceConferencewilllooklikefromyeartoyear.UptosixyouthmetseveraltimesintheSpringandearlySummerof2015,gatheringatNextStepCentralinCambridge,MA—bothinpersonandthroughvideoconferencing.TheFace2FaceYTFmeetingshelptogenerateexcitement,enthusiasmandownershipoftheconferencebytheyouththemselves.Face2FaceYTFparticipantsreviewschedulesandfeedbackfrompreviousconferences,discussnewideastoexplore,allinanefforttoimprovetheconferenceforthecomingyear.Usingamixofnewenergyandpreviousexperience,theYTFwasabletoshapeabalancedschedulefeaturingsomereturningfavoriteworkshopsandactivities—theSurvivorPanel,acrazycookingchallenge,theever-presentstagenightandmusicaljamsessionsanddiscussionsthatfocusedontheimpactofdrugsandalcoholinthelivesofyoungadultsurvivors.Wealsodiscussedthemanywayscancercanchangeourlivesandthereallifeimpactofanimprovednutritionaldiet.Additionally,Face2FaceYTFmembersplayavitalroleinrecruitingnewandreturningparticipants.Throughsocialmediaandinpersonconversations,YTFmembershelpnewparticipantsandtheirfamiliesbetterunderstandtheprofound,lifechangingexperienceaFace2FaceConferencecanhaveduringtheirtransitiontoadulthood.FromourveryfirstYTFmeetingin2015,eachmemberutilizedtheiruniqueexperiencesandperspectivesasyoungadultslivingwithcancertodrivethecreationofthe2015Face2FaceConference.Theresultwasnothinglessthanincredible.

Face2Face2015Overview

The2015Face2FaceConferencewasachancetocometogethertocelebrateanotheryearinthelifeofteensandyoungadultsimpactedbycancer.Friends—newandold—celebratedagrowingcommunity,newlifestoriesandburningquestionstobeasked.ForfourdaysinJuly,18youthcametogetherattheWarrenConferenceCenterinAshland,MA.The2015Face2FaceConferenceattendeesincluded12returningparticipantsand6participantsattendingtheconferencefortheveryfirsttime.

ThehardworkoftheNextStepstaffandthe2015Face2FaceYouthTaskForceshonethroughinfourdaysofinformative,interactiveworkshopsandengaging,yet,FUNfocusedactivities.Eachstepoftheway,participantschoseacomfortablelevelofparticipation,balancedwithrespectfulencouragementfromtheirpeersandstaff.Allinanefforttobuildnewfriendships,askdifficultquestions,andsitwiththeknowledgethatsomequestionsmaynoteverbeanswered.Againin2015,thetopicsdiscussedduringworkshopsandconferenceactivities,weregeneratedwiththehelpoftheYouthTaskForce.Face2FaceteenandyoungadultleaderscontinuetobeleadbyguidingprinciplessetdownbyFace2Faceparticipantsin2012:

Face2FaceGuidingPrinciples

ü WeNeedtohaveFUNü EachparticipanthasaVOICEandMESSAGEü Wearenotalone;thereisaCOMMUNITYü ALLideasarewelcome;OPENfordiscussionü ThereisHOPEü LeavewithmoreKNOWLEDGEü BuildCONFIDENCEü MeetpeopleWHERETHEYAREü BuildINDEPENDENCEü BuildCOMMUNITY

EvaluationOngoingevaluationisafundamentalpartofNextStep’sabilitytocreatemeaningfulprogrammingforyoungadultsaffectedbylife-threateningchronicillness.The2015Face2FaceConferencebeganwithparticipantsanonymouslysharingbasic,biographicinformationinapre-conferencequestionnaire.Thisprocesshelpedtobetterunderstandparticipants’knowledgeoftheirownmedicalconditions,ongoingtreatment,aspirationsforthefuture,andaccesstoexternalresources.Thesurveyhadaparticularfocusontheparticipant’slevelofindependenceintheireverydaylives.Allattendeescompletedprogramevaluationstogaugethesuccessofdailyactivitiesandworkshops,allowingNextSteptocontinuallyimproveitsprogramingbasedontheparticipantfeedback.Adepartingquestionnairefocusedonareasofpersonalgrowthasaresultofthe2015Face2FaceConference.

THURSDAY,July19th:BeOurGuest

ThebeginningofeveryFace2Faceconferenceisalwaysamixofemotionsand2015wasnodifferent.Asthedustbegantosettleaftercheck-ins,findingaplacetosleepandthemakingofpersonalnametags,Face2Faceconferenceparticipantsstartedtherealworkofreconnectingandmeetingpeersfortheveryfirsttime.Thoughtfullydeliveredicebreakergroup

activities,slowlyintroducedsilliness,respectandfun,allthewhileallowingthegrouptointroducethemselvestoeachotherontheirownterms.Dinner—ourfirstofmanydeliciousmealstogether—allowedthe“gettoknowyou”conversationstocontinuesmoothly.LaughsandgratitudetobebackeatingWarrenCenter’sfoodcouldbeheardallovertheroom.Whilethefirstnightofthe2015Face2FaceConferenceisallaboutgettingtoknoweachother,itisalsoaboutestablishingarespectfulandsafeenvironmentforeveryone.Participantsgatheredinacircleandagreedtoalloweveryonetotelltheir

AwesomenessRating

Everyafternoon,youngpeoplewereaskedtoreflectontheirdayandhowsatisfiedtheywerewiththeirworkshops.Theyratedeachafternoonworkshopthattheyattendedonascaleof“1=terrible”to“5=awesome.”Asimplemeanthereforebecomestheworkshop’sAwesomenessscore,whichisdocumentedbelow.

ownstory,ontheirownterms,intheirowntime.Makingmeaningofthemotivationsbehindattendingtheconferenceisdifferentforeveryone.Listeningtoandrespectingeachotheriswhatmakesitallwork.Thefirstnightofconferenceclosedwithareminderthatitisacancerdiagnosisthathasbroughtusalltogether.Individuals,shouldtheychoosetoshare,areeachgivenanopportunitytotellthegroupabouttheirdiagnosisandwheretheyreceivetreatment.Speakingtheword“cancer,”hopefullyremindedparticipantsthattheyarenowinasafeplace,wheretheycanspeakopenlyandhonestly.

FRIDAY,July10th:TheBareNecessitiesThefirstfulldayoftheFace2Faceconferencestartedwiththe“participantfavorite”FieldDay.Whatisfielddayyouask?Itisanefforttostartthingsofflaughing,beingphysicallyactiveandsmiling.Teamsofparticipantsworkedtheirwaythroughobstacles,trialsofbalanceandaculminatingteamchallengethatsaweveryoneworkingtogethertotransportwaterfromoneendofthefieldtoanother,allwhiletryingtograbthecovetedrubberduck.Afteraquickdryoffand“elaborate”celebrationoftheduck“liberating”champions,participantswerereadytostarttheworkoftheday.Awesomeness:4.4Ourfirstworkshop,ChewonThis:4HealthySnacks,wasleadbyJanelleHumberd,alicenseddietician,whohasparticipatedintheFace2FaceSurvivorsPanelwithherhusband,Brianforthelastthreeyears.Janelleledthegroupthrough

IcantalkwithfriendsthatsharemyconditionaboutthingsthatIwouldnotsharewithmyotherfriends.

PRE:76%|POST:93%

sourcing,preparing,andmostimportantly,tastingavarietyofdelicioussnacks.DuringtheplanningoftheFace2Faceconference,YouthTaskForcemembersrequestedmorenutritionworkshops,maintainingafocusofhealthy,affordableoptions.Answeringanyandallfoodrelatedquestions,Janellewasabletodelivermuchneededinformationalongwithtasty,healthyandeasytomakesnackideas.Awesomeness:4.3FridayafternooncontinuedwiththereturnoftheFace2FaceSurvivorsPanel.Forthethirdyearinarow,youngadultslivingwithcancergotachancetohearthereallifeexperiencesandaskquestionsof“older”survivorsofyoungadultcancer.Thepanelwasmadeofreturningspeakers—GrahameMarpole,theconferencedirector,andBrianandJanelleHumberd,whosharedtheuniqueperspectiveofacouplefacingBrian’scancerdiagnosis.Thepanelalsoincludednewmembers—SamanthaWatson,CEOoftheSamFund,AllisonMorseandKimberlyWhorton,whobroughtnewenergy,insightsandhopeforentireFace2Faceconferencecommunity.Awesomeness:4.3AFace2Faceconferenceafternoonwouldnotbecompletewithoutachancetoexploreourcreativeside.KimberlyKhare,LorrieKubicekandateamofmusictherapistsencouragedeveryonetocatchtheirbreath,trysomethingnew,orvisitanoldfavoritethroughthedailyArtandJamMusicSessions.Participantswereabletoexploretheir“hidden”andnotso“hidden”creativetalents,andbetterunderstandtheirexperiencewithcancerwhilealsofindingtheirvoice.Additionally,afteralongandthoughtfulday,quietandindependentartprojectswerealwaysavailablecourtesyoftheartisticallygiftedLaurieBethMangili-Gaines.Awesomeness:4.5The“Chopped”CookoffDinnerPartywasupnextfortheFace2Facecrew.Brokenupintoteams,participantsreceivedarandomassortmentoftasty,affordableandhealthyingredients.Theywerethenasked,inshortorder,tocreateadeliciousmealtopresenttoapanelofhungryjudges.Aspotsandpansflewallaround,participantsexperimentedwithingredientsandcreativelytalkedthroughtheirpresentations.Theireffortsledtosomeartistic,nottomentiondeliciousmeals.Judgedonpresentation,tasteandoverallcreativityeachteamrosetothechallenge,hopefullylearningsomeusefulculinaryskillsalongtheway.

Toendthefirstfulldayofthe2015Face2Faceconference,everyonegatheredaroundthecampfire.Thereweresongstobesung,storiestobeshared,andmosquitostobeswatted.Butmostimportantly,thecampfirewaschancetocelebratethehardworkoftheday,reflectonwhatwehadachieved,andwhatwestillwantedtoaccomplishduringtheremainderofourtimetogether.

SATURDAY,July11th:ICanGotheDistanceThesecondfulldayoftheFace2FaceConferencebeganwithavisitfromareturningfriend.KevinRice,artist,regionalmanageroftheHoleintheWallGangCamp’sHospitalOutreachTeamandallround,goodman,ledeveryonethroughafunPaintingWorkshop.Surprisedfacesfilledtheroomasthisguidedprocessledtosurprising,highqualityresults.WithKevin’sbrilliantteaching,everyoneleftwithabeautifulpaintingtotakeawayandasusual,helefteveryonelaughing.Awesomeness:4.4AttherequestoftheFace2FaceYouthTaskForce(YTF),Saturday’ssecondworkshopwasanopenandhonestconversationaboutdrugandalcoholuseamongteensandyoungadultslivingwithacancerdiagnosis.The“ToUseorNottoUse:DrugsandAlcoholasCopingMechanisms”workshopwasledbyJulieLunstead,theProjectManagerfortheAdolescentSubstanceAbuseProgramatBostonChildren’sHospital.JuliecreatedasafeplaceforFace2Faceparticipantstoaskquestions,sharetheirownexperiencesandlearnfromeachotherwithoutthefearofjudgmentorlossofconfidentiality.Inherworkshop,Juliewasabletoeducate,validateandupdateparticipantsoneverydayreallifeissuesencounteredbyallteensandyoungadults.Awesomeness:3.6

Iamwillingtoadvocateformyselfandotherslivingwithmycondition.

PRE:78%|POST:92%

Theafternooncontinuedwithaworkshopentitled,“HowHasCancerChangedUsFromtheInsideandOutside?”ledbytwo-timeFace2FaceConferenceattendee,ShardeFultz.Shardeisadancer,DetroitresidentandfaithfulmemberoftheFace2FaceYouthTaskForcewhoembracedtheideaofgivingbacktotheFace2Facecommunitybyleadingaworkshop.Withthehelpoftheconferencedirector,Shardewasabletostartamuchneeded,butsometimesdifficult,discussionabouthowcancerhasthepowertochangeus.Bysharingherownchallengeswithhercancerdiagnosisandtheimpactithadonherbodyimage,self-conceptandherabilitytofollowherpassionfordance,Shardeempoweredotherstothinkabouthowcancerhadalteredtheirownlives.TheconversationcametoaclosewithShardesharingapersonalstoryofthepoweroffaith,familyandlove.Shardeletusallknowthatcancermayhavechangedherbutcancerhasbynomeansbeatenher.Awesomeness:4.8WhatNextStepconferencewouldbecompletewithoutthepopularStageNight?!Thisspecialnightgivesourparticipantsachancetoshine,sing,danceandcelebrateourtimetogether.TosaythatStageNight2015wasincrediblewouldbeagrandunderstatement.Acombinationofclassicalpianorecitals,dance,poetryreadings,instrumentalmusicaljams,astairwellsinging

performancefortheagesanda“meowing”felinechoralarrangementamazedtheheartsandmindsofallinattendance.Stagenightwastheperfectleadintoaneveningofmoresinginganddancing,whichlastedwellintothenight.Agreatendtoagreatday!

“Ireallyenjoyedbeinginthiscamp!Everyactivitywasabsolutelywonderful.I’velearnedsomuch!”

Generously,aFace2Faceparticipantofferedtogivereadersaglimpseofthepowerofstagenight.ThisoriginalpieceofpoetrywasreadaloudatStageNight2015:

LoveandhaterelationshipsJustasIbegintoforget

YouaretheretoremindmeYouremindmehowstrongIam

AndyouarethereasonwhyI'mweak.Youmakemeabetterperson

YetIambitterthatyouarewithme.Iseeyoueverydayandatthesametime

Iwishyouwouldleaveforever.Youareareminderofatimewhere

Iwasmybestselfandsomehowfeltthemostdefeated.JustasIbegintoforget

YouaretheretoremindmeRemindmeofthepastandatimewhenwefirstmet.

AsIlookaroundIseestrangers,friends,familyandIseeyou.Ineedtorememberthatnomatterwhoyouaretothem,

Tomeyouareimportant.AndeventhoughtheymaynotunderstandourrelationshipOrknowwhatwehavebeenthroughtogetherIhaveto

RememberwhetherIhaveseenitornotTheythemselveshavefeltthesameway

IdowhenI'mwithyou.Afterall...Weallhavescars

SUNDAY,July12th:You’veGotaFriendinMeSunday,thelastdayoftheunforgettable2015Face2Faceconference,beganslowlybutendedwithaBANG.Tired,smilingfaceswandereduptothemaindininghallforbreakfastandtotake

Ihaveagoodsenseforhowtoachievemypersonalgoals.

26%ofparticipantsshowedanincreaseinpositiveresponsestothismeasure.

onelastgroupphotowithallparticipantsdawningtheirconferencet-shirt.Bagspackedandphotocomplete,participantssattogetherandtookamomenttoreflectonthefeelingsthatwerestirredupbytheirexperienceatconference.Intheworkshopentitled“Breakit,Burnit,TakeitAway,”participantshadanopportunitytosharethosethoughtsonsmallpiecesofwood.Somepieceswereimbuedwithmessagesthattheyouthwantedtoholdonto;someweresmashedinanefforttoreleaseuntoldenergy;andotherswereburned,symbolicallyreleasingtheircontentsintherisingsmoke.Atransitional“ResourceSharing”workshopwasnextupintheschedule,followedbythepopularslideshowviewingwhichperfectlycapturedthemagicandspiritoftheconferenceandthemanywonderfulmemorieswesharedtogether.Inthefinalhoursofourtimetogether,ourlastactivityprovedtobeabeautifulexpressionofwhatFace2FaceandNextStepaspiretobe.OurresidentMusicTherapistandDirectorofClinicalArts,KimberlyKhare,steppedintoworkwiththeentiregrouptopolishandrecordaversionofthesong“TheWordsNobodyKnows.”Writtenbythe2015Face2Facecommunity,“TheWordsNobodyKnows,”expressestheheartfelthopesanddreamsofanincrediblegroupofyoungpeopleimpactedbycancer.Thiswasawonderfulmomentwhereyoungpeoplepassionatelycametogethertogiveavoicetothejourneythatteensandyoungadultslivingwithcanceroftenface.

“TheWordsNobodyKnows”|Face2Face2015VERSEWhatdoyousay–whentherearenowords?Whatdoyoufeel–whennothingseemsreal?Howdoyouplay–whenthegame’sjustnotfairStepup2theplate–andhavenofearCHORUSKeepmovingthoughyourbody’sweakYourheartisstrongDon’tgiveupnowThebeatwillcarryonListentothesongIsingLetitfillyourheartwithstrengthNothingcanstopusnow

Conclusion

Thankstothehardworkanddedicationofourdonors,NextStepstaffandvolunteers,18youngadultsdirectlyimpactedbycancergotachancetocelebratenewfriendships,strengthenoldones,andenteragrowingcommunityofpeerswho“getit.”Welaughed,wesmiled,weencouragedeachotherandweaskedmoreofourselvesandallthosearoundus.Weknowmorethaneverthatwearenotaloneinourbattlewithcancer.NextStepwishestheFace2Facecommunitycontinuedstrengthandgoodhealth.WelookforwardtothecontinuedgrowthofFace2Facein2016andbeyond!

“TheWordsNobodyKnows”|Continued…VERSE2Findingthewords–IsliketryingcatchacloudAlwaysoutofreach–Nodirection–Udon’tknowhowWhenyoufeellikeyoucan’tgoonLikeyou’llneverbedoneDon’tgoagainstthewindLetitguideyouhomeCHORUSKeepmovingthoughyourbody’sweakYourheartisstrongDon’tgiveupnowThebeatwillcarryonListentothesongIsingLetitfillyourheartwithstrengthNothingcanstopusnow