Meet the CPN Team Running the Falmouth Road Race by courageousparentsnetwork

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AboutThisMagazine

CourageousParentsNetworkturns10thisyear,andwearecelebrating bybothappreciatingalltheindividualswhohelpedusgethereand buildingcapacitytomoveforwardandhelpmorefamiliescaringfor childrenlivingwithseriousmedicalconditions.

Parentsandcaregivers,pediatricclinicians,donorsandfriends– we move together on This Shared Journey.

ThismagazinehighlightsCPN'sinvolvementwiththe2024Falmouth RoadRace.ThisyearmarksthefifthyearCPNwillhaveateamrunning thissummerevent.

Thisyear,TeamCPNismadeupof14 enthusiastic,committedrunners participatinginthe2024AsicsFalmouthRoadRace.Weareexcitedthat fourrunnersonTeamCPNarebeing'virtually'pairedwithCPNParent Champions: AliciaispairedwithAubrey,momofDe'Aubrey. ElinorispairedwithLindsey,momofOwen. KellyispairedwithMaria,momofJacob. ShaelynispairedwithAshley,momofViggo.

Inthepagesthatfollowwefeaturethoserunnersandsharetheirstories onwhytheyarerunningforCPNthisyear.

Fundraising

CPN'sgoalistoraiseatleast$30,000,allowingCPNtoreachmorea widerrangeoffamiliesandclinicianswithexistingandnewresources andprogrammingtoorient,equipandempowerthem.Resourcesthat willhelpparentsandothersfeeltheyaredoingtheverybesttheycanfor theirchildandfamily.

Eachrunnerwillbefundraisingfromtheirfamilies,friendsandsupport networks.However,anyonecansupportTeamCPN.

Youcandonatetodayanditwillgotowardstheteam'sgoalof$30,000.

Tomakeageneralteamdonation:

Visittheteampagehere. Stayatthetopofthepageandselectanamountorotherifyoudon't seetheamountyouwanttodonate. Thenfollowthepromptstosubmityourdonation.

RelevantBlogs

TheFalmouthRoadRace,TeamCPN,andTheStoriesthatCarryUs

RunningtheFalmouthRoadRace(virtually)forCPN:AFamilyand PediatricProviderAffair

RunningintheSunforOurChildrenandTheirChildren

TheEnduranceWeDidn'tChoose

Runnersfrom VariousStates

Meetthe2024 Runners

NateBarr

AliciaCasey

JeremiahCasey

ElinorKeehn

FrankKraese

NicoleKraese

DaveNicholson

TomQuinn

SteveShaw

JennySpiegel

ShaelynWaller

NateBarr

Nate’sStory

IamasenioratWesleyanUniversity.Irancrosscountryinhighschoolandrecently finishedmyfirsthalfmarathoninWoodstock,Vermont.BlythLordisaclosefriend ofmymother's.Sheisthegodmothertomyolderbrother,Max,andhasbeena closefamilyfriendformyentirelife.

IworkedforCPNduringthesummerof2021,rightbeforemyfreshmanyearof college.Itwasanamazingexperienceandhadahugeimpactonme.Iamvery excitedtoruntheFalmouthRoadRacewithCPN.

AliciaCasey

IamhonoredtorunforCPNinmemoryofmyniece,Emerson,whodiedof complicationsofarareandprogressiveneurologicdisorder,GaucherType2.Ialso runinhonorandmemoryofmypatientswithseriousandlifealtering/limiting respiratoryconditions.

Thisyear,IampairedwithCPNParentChampionAubreyandgettorunin honorofsonDe’Aubrey.

IamaPediatricPulmonologistandthePulmonaryMedicineFellowshipProgram Director.Manyofmypatientsandcolleagues,mysister-in-lawandbrother-in-law, andIhavebenefitedfromCPNresources.IamsogratefultoCPNforthesupport thattheyprovideasithelpsmetotakebettercareofmypatients.

Iamdelightedtorunthisyearalongwithmyson,JeremiahCasey,mycollege friend,MaryKateO'Brien,mypulmonarycolleague,KellyQuinn,andmybrother-inlaw,SteveShaw.

Alicia'sStory

JeremiahCasey

Jeremiah’sStory

MynameisJeremiahCasey.IrunCrossCountryandTrackandFieldandplay HockeyforCatholicMemorial.Mymother,AliciaCasey,isalsorunningtheFalmouth RoadRaceforCourageousParentsNetwork(CPN).

ThereasonwhyIamrunningforCPNistohonorthememoryofmycousin Emerson.Emersondiedatjust16monthsoldandwastakenfartoosoon.Despite beingonlyfiveyearsoldwhenshedied,IhavemanymemoriesofEmerson.My favoritememoryistorememberbeingatmygrandmother’shouse,sittingatthe breakfastnookeatingwithher.Emersonwassittinginahighchairandlaughing.I alsorememberthedayofEmerson’sfuneral.Mydadhadputtogetheraslideshow ofpicturesofEmersontorememberher.Icriedthrougheverypictureandlaughed atsome,butdeepdownIknewIwouldmissgrowingupwithher.

Iamnow8yearsolderandnowabletoruntheFalmouthRoadRacealongsidemy motherandmyuncletoraisemoneyandawarenessforCPNastheyhelpedmy familysomuchthroughlosingEmerson.CPNalsohelpsmymother’spatient’s familiesastheyfacesimilarchallenges.

ElinorKeehn

Elinor’sStory

MynameisElinor,andI'marisingseniorat MiddleburyCollege.Itookaclassthisspringcalled "LivingwithIllness"withDr.LauraBasili,a wonderfulandwisementor(andfriend!). Throughoutthecourse,welearnedaboutmaking meaningfromhardshipandtheimportanceof supportcommunities-conceptsthatLauraoften illuminatedwithexamplesfromCPN’swebsite.

Iamluckyenoughtohavebeenpairedupwitha CPNParentChampion,LindseyToppingSchuetz.Lindsey’sseven-year-oldson,Owen, hasCriduChatSyndromealongwitha secondarychromosomalabnormality;heis currentlytheonlypersonknowntobeaffected bybothofthesesyndromessimultaneously. Despiteallofthechallengeshehasfacedand thecountlessdayshehasspentinthehospital (nottomentiontimewithpediatricclinicians, specialists,andoccupationaltherapists), Owen’sspiritremainsunafflicted.Lindsey reportsthatheisanabsolutejoytobe

around–stubbornlymarchingtothebeatofhis owndrum,unconcernedwithothers’ expectationsofhim.

Inadditiontobeingasuper-mom,Lindseyhas beenhardatworkadvocatingforpediatric palliativecare.

AsI’mnearingayearsinceIsustainedinjuriesto myfootandkneeinanaccidentlastAugust,I’ve beenreflectingonhowluckyIamtohavehadso manypeopleinmycornerthroughoutmyrecovery. I’mconfidentIwouldnotbeabletodothethingsI candotoday(includingrunsevenmiles!)without thesupportIreceivedfromfriends,family,nurses, surgeons,physicaltherapists,coaches,teachers–thelistgoeson.Inrecognitionofthissupport,and inacknowledgementofthesupportthatCPN providesfortheirfamilies,Iamhonoredto representsuchanincredibleorganizationduring theFRRthisyear!

FrankKraese

Frank’sStory

ThisyearbothNicoleandIwillberunningtheFalmouthRoadRaceinhonorofthe CourageousParentsNetwork(CPN).CPNwasreferredtoourfamilybythePalliativeCare TeamatConnecticutChildren’sMedicalCenter,duringoneofourstaysforourson Matthew.

Matthewwasbornwithseveralcerebralanomalies.Theseanomalieshaveimpactedevery aspectofMatthew’slife.Diagnosedwithmicrocephaly,completeACC,polymicrogyri, spasticquadriplegiccerebralpalsy,andasevereformofepilepsy,LennoxGastaut Syndrome…Matthewhassufferedandashisparentsweneverimaginedtheamountof griefandtheconstantchallengesparentsandfamilieslikeoursface.

CPNhasbeenatremendouslyimportantresourceandaspaceofcomfortandsupport duringsomeverydifficultandchallengingdaysforourfamily.CPNwasthereduringthe longandlonelynightsweneededtofeelclosetootherparentswhoexperiencesimilar challenges.CPNdidnotallowustofeelalone.Weareforevergratefulfortheamountof knowledge,insight,empathy,andSOLIDsupportCPNhasgivenus.ItisOURhonorto support,fundraise,bringawareness,andrunforthisnetworkofINCREDIBLEchildren, parents,siblings,extendedfamilies,andproviders.PleasehelpNicoleandIraiseasmuch aswepossiblycanfortheCourageousParentsandthechildrentheyadore.THANKYOU forallowingustobepartofsuchanamazingteamofloving,inspirational,andcourageous parents.

NicoleKraese

ThisyearbothFrankandIwillberunningtheFal CourageousParentsNetwork(CPN).CPNwasref TeamatConnecticutChildren’sMedicalCenter,d Matthew.

CPNhasbeenatremendouslyimportantresourceandaspaceofcomfortandsupport duringsomeverydifficultandchallengingdaysforourfamily.CPNwasthereduringthe longandlonelynightsweneededtofeelclosetootherparentswhoexperiencesimilar challenges.CPNdidnotallowustofeelalone.Weareforevergratefulfortheamountof knowledge,insight,empathy,andSOLIDsupportCPNhasgivenus.ItisOURhonorto support,fundraise,bringawareness,andrunforthisnetworkofINCREDIBLEchildren, parents,siblings,extendedfamilies,andproviders.PleasehelpFrankandIraiseasmuch aswepossiblycanfortheCourageousParentsandthechildrentheyadore.THANKYOU forallowingustobepartofsuchanamazingteamofloving,inspirational,andcourageous parents.

Nicole'sS

DaveNicholson

WhenAldenwasdiagnosedwithPMG,araregeneticbrainmalformation,ourfamily wasforeverchanged.CourageousParentsNetwork(CPN)isanamazingresource thatLauraandIhaveaccessedthroughoutourjourney.CPNhelpedusfindourway throughthefogofgriefthatenvelopedusafterAlden'sinitialdiagnosisandwe continuetoturntothemaswenavigatethecomplexdecisionsthatarerequiredas parentsofamedicallycomplexchild.

IamthrilledtobesupportingCPNbyjoiningtheirteamagainforthe2024Falmouth RoadRace,mythirdconsecutiveyearsupportingthisgreatclause.Having welcomedathirdchildintotheworldearlierthisyear,mytrainingscheduleisa littlelessconsistentbutIknowtheeventwillbefunregardless!

Ifyouwanttoknowmoreaboutourjourney,checkoutLaura'swebsitehere: https://www.adragonmomswords.com/.

Dave'sStory

MaryKateO'Brien

MaryKate'sStory

CPNisanon-profitorganizationthathelpsparentsandcaregiversofchildrenwith seriousmedicalconditions.CPNprovidesresourcesthatreflecttheexperienceand perspectiveofotherfamiliesandclinicians.

Personally,IhaveseveralfriendswhohaveutilizedCPNtohelpnavigatethemany challengesofcaringfortheirchildwithaseriousmedicalcondition.Beingaparent and/orcaregiverisoneofthehardest(andmostrewarding)experiences;caringfor achildwithamedicalcondition(especiallyserious)isnotonlychallengingbutalso overwhelming.CPNprovidesanetworkofindividualsandresourceswhohaveboth personalexperienceandknowledgeofwhatitentails.CPNprovidesafamilyof individualswho'getit',havebeenthereandknowhowtonavigatethisjourney.

Finally,Iamsogratefultohavethisexperienceagain,happytorunandraisemoney forsuchagreatorganizationanddoitwithmydearfriendAlicia(formerHolyCross cross-countryandtrackteammate-go'Saders!).

KatherinePeeler

Katherine’sStory

Thisismy3rdtimerunningtheFalmouthRoadRace.Iamthrilledtorunittoraise moneyforCourageousParentsNetwork(CPN).CPNisanincredibleorganization thatwasstartedbyfamilieswithchildrenencounteringdifficultmedicaldecisions.

CPNhelpsotherfamiliesunderstandtheoptionsinthesecomplicateddecisions, seehowfamilieshavechosenbothto,andnotto,pursueagivenmedicalpath dependingonwhatisrightfortheirindividualkidandgivesfamiliesacommunityof supportduringstressfultimes.

CPNhasbeenanimmenselyhelpfulresourcetothekidsandfamiliesItreatinthe pediatricICU!

KellyQuinn

Hello!MyhusbandTomandIarethrilledtoberunningtheFalmouthRoadRaceagainthisyear!Wearehonored toberunninginsupportoftheCourageousParentsNetwork(CPN)onceagain,anon-profitorganizationthat orientsandempowersparentsandotherscaringforchildrenwithaseriousmedicalcondition,byproviding resourcesandtoolsthatreflecttheexperienceandperspectiveofotherfamiliesandclinicians.

Thisyearisevenmoremeaningfultous,aswe’llberunninginhonorofJacobandhisfamily.Ihadthe privilegeofmeetingJacob’smother,Maria–afierceadvocateanddedicatedmotherwhoisgenerousto hercore;anexampleofwhatIaspiretobeformyownson.Mariatoldmethefollowing:Jacoblivedwith amitochondrialdiseasefortenbeautifulyears.Jacob’sbrainandlungswereseverelyimpactedbyhis geneticmetabolicdisease,ofwhichthereisnocure.Jacobhadfrequentrespiratoryinfectionsand pneumonias.DespiteJacob’sdisease,helovedtogotoschool,spendtimeinthepoolandlovedthe Minions.Thesong“Happy”wasalwaysonrepeat.Forus,itwasabsolutelycriticaltohavea pulmonologistwhoconsideredourwholefamily’sgoalsandguidedusincomplex,difficultdecisions,for exampletheprosandconsoftracheotomy(aprocedurewhereatubeisinsertedinthethroattohelp someonebreathe).Ourpulmonologistalsoletustreatmanypneumoniasfromourhomeratherthanthe hospital.We’reforevergratefulforthis.

TomandIarebothphysicianspracticingpulmonarymedicineinBoston CPNhasprovidedaninvaluable collectionofresourcesforustobeabletosharewithourpatientsandfamilies,inparticularthosesame resourcesthathelpedJacobandhisfamily:guidesforunderstandingpalliativecareandhospice,guidesfor navigatingdifficultdecisionsintheICUsetting,andthedecisionguideforthoseconsideringtracheotomy.CPN hassupportedourmissionthatourpatientsandfamilies"NeverWorryAlone".

Weappreciateanyandalldonationsforthistrulywonderfulcause.SeeyouinFalmouthaswerunpastour weddingvenue,blasting“Happy”onourheadphonesinhonorofJacob!

Kelly'sStory

TomQuinn

MywifeKellyandIarethrilledtoberunningtheFalmouthRoadRaceagainthisyear!Wearehonoredtobe runninginsupportoftheCourageousParentsNetwork(CPN)onceagain,anon-profitorganizationthatorients andempowersparentsandotherscaringforchildrenwithaseriousmedicalcondition,byprovidingresourcesand toolsthatreflecttheexperienceandperspectiveofotherfamiliesandclinicians.

Thisyearisevenmoremeaningfultous,aswe’llberunninginhonorofJacobandhisfamily. Ihadthe privilegeofmeetingJacob’smother,Maria–afierceadvocateanddedicatedmotherwhoisgeneroustoher core;anexampleofwhatIaspiretobeformyownson.Mariatoldmethefollowing:Jacoblivedwitha mitochondrialdiseasefortenbeautifulyears.Jacob’sbrainandlungswereseverelyimpactedbyhisgenetic metabolicdisease,ofwhichthereisnocure.Jacobhadfrequentrespiratoryinfectionsandpneumonias. DespiteJacob’sdisease,helovedtogotoschool,spendtimeinthepoolandlovedtheMinions.Thesong “Happy”wasalwaysonrepeat.Forus,itwasabsolutelycriticaltohaveapulmonologistwhoconsidered ourwholefamily’sgoalsandguidedusincomplex,difficultdecisions,forexampletheprosandconsof tracheotomy(aprocedurewhereatubeisinsertedinthethroattohelpsomeonebreathe).Our pulmonologistalsoletustreatmanypneumoniasfromourhomeratherthanthehospital.We’reforever gratefulforthis.

KellyandIarebothphysicianspracticingpulmonarymedicineinBoston CPNhasprovidedaninvaluable collectionofresourcesforustobeabletosharewithourpatientsandfamilies,inparticularthosesameresources thathelpedJacobandhisfamily:guidesforunderstandingpalliativecareandhospice,guidesfornavigating difficultdecisionsintheICUsetting,andthedecisionguideforthoseconsideringtracheotomy.CPNhassupported ourmissionthatourpatientsandfamilies"NeverWorryAlone".

Weappreciateanyandalldonationsforthistrulywonderfulcause.SeeyouinFalmouthaswerunpastour weddingvenue,blasting“Happy”onourheadphonesinhonorofJacob! Tom'sStory

SteveShaw

Eightyearsago,welostourdaughter,Emerson,toararegeneticillness.Two monthsafterrelocatingfromSeattletoVermont,wediscoveredthatourseemingly healthydaughterwouldlikelynotlivetoseetwo.ShediedinJune2016at16 monthsold.

Throughoutherjourney,wereceivedtremendoussupportfromfriends,family,and medicalproviders,aswellastheCourageousParentsNetwork(CPN).CPNisan onlinesupportnetworkforparentsandcaregiversofseriouslyillchildren,offering resourcesbasedonfirsthandexperiencesandexpertguidance.Theyhelpedusfeel empoweredincaringforEmersonandconnectedustoasupportivecommunity.

Steve'sStory

JenniferSpiegel

Jennifer'sStory

IamaNYC-basedprivatefundslawyerwhohasbeenrunningforover30yearsnow. IhavefollowedCPNsinceitscreationbecauseitwasfoundedbyacollege classmateofmine,BlythLord.Earlyon,Irealizedsomeofthearticlesshepostedon theCPNsitehadamuchbroaderreachthantheimmediatecommunityoffamilies ofmedicallycomplexchildren.Onearticleinparticular aboutanticipatorygrief trulyresonatedwithmebecauseIrealizeditwasessentiallyaboutlearningtolive in,andappreciate,thepresentmoment somethingwecanalllearntodobetter.

So,asanavidathlete,IwasveryeagertoparticipateinCPN’sfirstfundraisingforay throughtheFalmouthRoadRace.Thefirstyearwoundupbeingremote weran thesamedistancenearBlyth’shomenearBoston,evendoingastretchalongthe Bostonmarathon’sheartbreakhill.Itturnedouttobethehighlightofthe2020 summerforme,notjustbecauseoftherunningandtherareopportunitytoleave myapartmentinNYCandseepeople,butbecauseoftheopportunitytospendtime withtheCPNcommunity.DuringthelonelytimesofCOVID,withnoendinsightat thatpoint,Iwastrulyupliftedbytheexperience.Itimpresseduponmethepower andimportanceofcommunity.AyearlaterIwasabletoruntheFalmouthRoad RaceliveinFalmouthandonceagainembracetheCPNcommunitypost-race.So,I amveryexcitedtoberunningwithTeamCPNonceagainthisyearandcontinueto beinspiredbyallthatCPNdoesandthecommunityofsupportithascreated.

ShaelynWaller

MynameisShaelyn,or"ShaeShae"asmypatientscallme.Ihavebeenapediatricnurse since2015,startingmycareerasapediatricpalliativecareandhospicenurseinMA.Iam currentlyapediatricacutecarenursepractitioneratTheChildren'sHospitalof Philadelphia,caringformedicallycomplexchildren.

DuringmyyearscaringforchildrenandfamilieswithacutechronicandterminalillnessesI learnedaboutCourageousParentsNetwork(CPN).CPNhasactedasavitalsupporttothe familiesinmakingdelicateandimportantdecisionsaswellasprovidingasafeplacefor familiestoexpresstheirfeelingsaboutunimaginablesituations.Asaprovider,Ihavebeen abletouseCPNtofindresources,mentors,andtoolstobetterunderstandwhatfamilies areupagainstintheirdailylives.

Thisyear,IgettoruninhonorofViggoandhisfamilyhavingbeenpairedwithAshleyViggo’smomandCPNParentChampion.

HavingCPNtoreferfamiliesandtouseasapersonalresourcehasallowedmetobea betternurseandpalliativecareprovider.Iamaskingforsupportinreachingmy fundraisinggoal!AllofthemoneyraisedwillbedonatedtoCPNtohelpthemtocontinue todotheamazingworkthattheydo.IwillberunningonAugust18th,perthescheduled FalmouthRoadRace.ThisisoneofmyfavoriteracestorunandIamsohappytobeableto runagainforthisimportantandcherishedorganization.

Shaelyn'sStory

AboutCPN

Purpose

Toorientandempowerparentsandotherscaringforchildrenwithaserious medicalcondition,byprovidingresourcesandtoolsthatreflecttheexperienceand perspectiveoffamiliesandclinicians.

Vision

Parentsandotherscaringforchildrenwithaseriousmedicalconditionhave confidencethattheyaredoingtheverybesttheycanforthechildandfamily.

WhatWeOffer

CPNisanonprofitorganizationthatprovidescurateddigitalresourcesand programmingtohelpcaregiversadvocateforchildrenlivingwithseriousillness andnavigatetheillnessjourney.AtthecenterofCPNareparentandclinician voicesthatilluminatethelivedfamilyexperienceandfocusonpsycho-socialand emotionalneeds,regardlessofdiagnosisandwithoutbias.

CPNresourcesincludevideos,podcasts,newsletters,ablog,socialmediaposts, educationalguidesandlearningpathwayswrittenforfamilies,andaclinician portalofferingmaterialsforuseinself-andcolleagueeducation.Programsinclude virtualevents,andvirtualandin-personpresentationstoclinicianaudiences, industryandpatientorganizations.CPNalsopartnerswithotherstobringthe familyperspectivetoclinicalresearchandawiderangeofcommunication(or media)outlets.