MEET THE INCREDIBLE RUNNERS JOINING TEAM CPN FOR THE 2025 FALMOUTH ROAD RACE
AboutThisMagazine
FormorethanadecadeCourageousParentsNetwork,anonprofit organization,hasoriented,equippedandempoweredthosecaringfor childrenwithaseriousmedicalcondition.
Wecelebrate This Shared Journey:parentssharingtheirperspectivesto supportothersandbuildcommunity;clinicianssharingtheirexpertiseand commitmentwhilelearningfromtheinsightandexperienceoffamilies. Throughthesecollaborationsweaspiretobuildconfidencethatallaredoing theverybesttheycanforthechildandfamily.
ThismagazinehighlightsCPN'sinvolvementwiththe2025FalmouthRoad Race.ThisyearmarksthesixthyearCPNwillhaveateamrunningthis summerevent.
Thisyear,TeamCPNismadeupof14enthusiastic,committedrunners participatinginthe2025AsicsFalmouthRoadRace.Weareexcitedthatfive runnersonTeamCPNarebeing'virtually'pairedwithCPNParent Champions:
MicheleTorresispairedwithAislingparentofÉabha.
SteveShawispairedwithEddieparentofAnna.
CourtneyFrattoispairedwithKelseyparentofStella. AliciaCaseyispairedwithBlairparentofBubba.
AlyssaDickeyispairedwithMariaparentofJacob.
Inthepagesthatfollowaretherunnerstheirstoriesonwhytheyarerunning forCPNthisyear.
Fundraising
CPN’sgoalistoraise$30,000allowingCPNtodevelopandlaunch newtopicareascriticaltoaffectedfamiliesandproviders.
Eachrunnerwillbefundraisingfromtheirfamilies,friendsandsupport networks.However,anyonecansupportTeamCPN.
Youcandonatetodayanditwillgotowardstheteam'sgoalof$30,000.
Tomakeageneralteamdonation:
Visittheteampagehere.
Stayatthetopofthepageandselectanamountorotherifyoudon't seetheamountyouwanttodonate.
Thenfollowthepromptstosubmityourdonation.
RecommendedReading
TheFalmouthRoadRace,TeamCPN,andTheStoriesthatCarryUs
RunningtheFalmouthRoadRace(virtually)forCPN:AFamilyand PediatricProviderAffair
RunningintheSunforOurChildrenandTheirChildren
TheEnduranceWeDidn'tChoose
AliciaCasey
JeremiahCasey
SarahCasey
AlyssaDickey
CourtneyFratto
CharlieLord
DaveNicholson
MaryKateO’Brien
SteveShaw
JenniferSpiegel
KateTighe
MicheleTorres
AhmetUluer
LauraWill
AliciaCasey
IamhonoredtorunforCPNinmemoryofmyniece,Emerson,whodiedof complicationsofarareandprogressiveneurologicdisorder,GaucherType2.Ialso runinhonorandmemoryofmypatientswithseriousandlifealtering/limiting respiratoryconditions.
IamaPediatricPulmonologistandthePulmonaryMedicineFellowshipProgram Director.Manyofmypatientsandcolleagues,mysister-in-lawandbrother-in-law, andIhavebenefitedfromCPNresources.IamsogratefultoCPNforthesupport thattheyprovideasithelpsmetotakebettercareofmypatients.
Iamdelightedtorunthisyearalongwithmyson,JeremiahCasey,mycollege friend,MaryKateO'Brien,andmybrother-in-law,SteveShaw.
JeremiahCasey
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.
Iamnow9yearsolderandnowabletoruntheFalmouthRoadRacealongsidemy motherandmyuncletoraisemoneyandawarenessforCPNastheyhelpedmy familysomuchthroughlosingEmerson.CPNalsohelpsmymother’spatient’s familiesastheyfacesimilarchallenges.
Jeremiah’sStory
SarahCasey
Hi,I’mSarah.I’mtheTeamCaptainforCPN’sFalmouthRoadRaceTeam.I'm participatingintheroadracethisyearviathevirtualoption,theweekbeforetheinpersonrace.OnracedayI'llbemanaginglogistics,andcheeringourteamon!Ilivein EssexJunction,VermontwithmyhusbandSteve(whoisrunning)andourdaughter Margotwhois5.
OurfamilywasintroducedtoCPNin2015,bythePACTteamatBostonChildren's HospitalwhenourdaughterEmersonwasdiagnosedwithType2Gaucher'sDiseaseat 8monthsold.Emersondiedin2016at16monthsold,andwefeelthatwegaveher thebest,andmostfull,lifepossible.Andwhileherdeathwasdevastating,wehad (andstillhave)noregretsaboutthedecisionswemadealongtheway.Westrongly believethatthesupportandguidancewefoundinCPNhelpedmakethisso.
Ifeelproudtobeapartofsuchawonderfulandfull-heartedteam!
Sarah’sStory
AlyssaDickey
IliveinthecapitalregionofNewYork(Niskayuna)withmyhusbandJason,kiddos Barrett(13)andGraham(7),anddogJasper.IamamicrobiologistwiththeNYS DepartmentofAgandMarketsandworkinfoodsafety.IhavedonetheFalmouth racewithCPNvirtuallyoncebefore,butIamthrilledtoparticipateinpersonthis year!
IbecameawareofCPNandtheincredibleresourcesandsupporttheyprovide throughSarahandSteve’sintroductionandtheirjourneywithEmerson.Whilemy familyhasnotdirectlyexperiencedanythingtothemagnitudeofachild’slife limitingdiagnosisandallthatentails,ouryoungersonhasfacedsomesignificant healthchallengesalongtheway(evenworkingwithseveralprovidersatBCH)andI canonlyempathizewiththefamiliesnavigatingtheseunbelievablydifficultpaths. Recognizinghowresourcelimitedeventhemostworthyofcausesarethesedays,I amhappytohelpoutinwhateversmallwayIcantohelpraisemoneyforCPN.
AlyssaispairedwithParentChampionMaria,parentofJacob.HearfromMaria onhowwhysheisexcitedtobeaParentChampionbecauseofthevalueof CPN.
Alyssa’sStory
CourtneyFratto
Thisisawonderfulcause,nearanddeartomyheart.WorkingintheMedical Intensivecareunit-Iseeveryoftenhowsupportivethisorganizationis.
CPNsupportsfamiliescaringforchildrenwithlife-limitingillnessesastheytakethat firststepintoalifetheyhadnotimagined;andcontinuestobethereforthem throughoutthejourneythatfollows–guidingthemwithinsightsfromotherparents whohavegonebeforeonissuessuchascopingwithdiagnosis,makingcomplex medicaldecisions,keepingtheirfamilystrong,andcopingafterthedeathoftheir child.
CPNalsosupportsmedicalproviders,givingthemimportantinsightsintothelived experienceofthechildrenandfamiliestheycarefor.
CharlieLord
IamsoexcitedtoruntheFalmouthRoadRaceforCPN.Asyoulikleyknowmy wonderfulwifeBlythfoundedCPN-inspiredbyourdaughterCameronandthe amazingpeoplethathelpedusmakethearcofherlifefullandbeautiful.Iam runningforCameronandfordearHaviLevGoldsteinwhoissuchaninspirationfor Blythandforme.
ThankyousomuchforsupportingCPNsothatitcanreachevermorefamilies caringforchildrenwithseriousillnessandsupportmoreandmoreclinicianswho wanttoprovidethelovingandcompassionatecarethatwesovaluedinthecare thatCameronreceived.
Charlie’sStory
DaveNicholson
WhenAldenwasdiagnosedwithPMG,araregeneticbrainmalformation,ourfamily wasforeverchanged.CourageousParentsNetwork(CPN)isanamazingresource thatLauraandIhaveaccessedthroughoutourjourney.CPNhelpedusfindourway throughthefogofgriefthatenvelopedusafterAlden'sinitialdiagnosisandwe continuetoturntothemaswenavigatethecomplexdecisionsthatarerequiredas parentsofamedicallycomplexchild.
IamthrilledtobesupportingCPNbyjoiningtheirteamagainforthe2025Falmouth RoadRace,myfourthconsecutiveyearsupportingthisgreatclause.
Ifyouwanttoknowmoreaboutourjourney,checkoutLaura'swebsitehere: https://www.adragonmomswords.com/.
Dave'sStory
MaryKateO'Brien
MaryKate'sStory
ThisismythirdyearrunningtheFalmouthRoadRacetoraisemoneyand awarenessforCPNandI'mverygratefulfortheopportunity.
CPNisaremarkableorganizationdedicatedtoprovidingsupportandknowledge forchildrenwithseriousillnessesandtheirfamiliesandcaregivers.CPNisa pricelessandtrustedresource.Itprovidesinformationandpersonalexperiences withthegoaloforientingandempowering.
Anydonationisgreatlyappreciated! Iknowthistrainingandtheracewillnotbe easy;butwhenitgetstough,Iwillfocusonwhatthesefamiliesandcaregiversgo througheveryday.
SteveShaw
Nineyearsago,welostourdaughter,Emerson,toararegeneticillness.Two monthsafterrelocatingfromSeattletoVermont,wediscoveredthatourseemingly healthydaughterwouldlikelynotlivetoseetwo.ShediedinJune2016at16 monthsold.
Throughoutherjourney,wereceivedtremendoussupportfromfriends,family,and medicalproviders,aswellastheCourageousParentsNetwork(CPN).CPNisan onlinesupportnetworkforparentsandcaregiversofseriouslyillchildren,offering resourcesbasedonfirsthandexperiencesandexpertguidance.Theyhelpedusfeel empoweredincaringforEmersonandconnectedustoasupportivecommunity.
SteveispairedwithParentChampionEddie,parentofAnna.HearfromEddie aboutwhatmakeshimexcitedtobeaParentChampion.
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.
IamveryexcitedtoberunningwithTeamCPNonceagainthisyearandcontinueto beinspiredbyallthatCPNdoesandthecommunityofsupportithascreated.
KateTighe
Byday,IliveinNYCandleadSanofi'sUSPublicAffairsandPatientAdvocacyteam forImmunology.Moreimportantly,I'mprivilegedtoserveasChairoftheBoardof DirectorsforCourageousParentsNetworkandguidetheorganizationinsupportof thefamiliesandclinicianswhocollectivelymakeuptheCPNecosystem.
IknowhowmeaningfulandimpactfultheworkofCPNisand,becauseofthepower andimportanceofthisorganization,Ifindmyselfcomingbacktothesamequestion -"HowmightwemakemorepeopleawareofCPN'sresourcessothattheycanfeel incommunitywithotherswalkingthesamejourney?"OnewayI'mtryingtoanswer myownquestionisrunningtheFalmouthRoadRace,bothtoraisefundstoamplify CPN'sreachandtoinspirefolkslookingatmysinglettolookupCourageous ParentsNetworkand(hopefully!)getinvolved.
MicheleTorres
IamexcitedtoruntheFalmouthRoadRaceforwhatIthinkisthethirdtimerunning withTeamCPN.IamtheproudMamaofMateoandJohnny.Mateoturned18years oldinMarchandhasLennoxGastautSyndrome.HewasdiagnosedwithInfantile Spasmsat5monthsofage.Ithasbeenaroughjourneywithmanyblessingsalong theway.BothMateoandJohnnyareaconstantsourceoflearningandinspiration forme!
IworkatBostonChildrenasahospitalchaplainandwillcelebrate16yearsof employmentinSeptember.BlythreachedouttometobeinterviewedforCPNasa spiritualcaregiver,around2011.CPNisadeeplymeaningfulresourcethatIuse regularlywiththefamiliesIvisit.
ItgivesmegreatjoythatwehavemadeCPNinclusiveofourLatinoandSpanish speakingfamilies.Iamsogratefultobepartofthisextraordinarycommunity!!
MicheleispairedwithParentChampionAisling,parentofÉabha.Hearfrom AislingaboutwhysheisexcitedtobeaParentChampion.
Michele’sStory
AhmetUluer
IhaveapersonalconnectiontoBlythLordasafellowParkSchoolparent,andaprofessionalone throughoursharedfocusonsupportingparentsandclinicianscaringforfullydependentyoung adultstransitioningtoadulthood.InmyroleasDirectoroftheBRIDGESProgramatBoston Children’sHospital,Ileadateamofnursepractitioners,atransitioncoordinator,andsocialworkers dedicatedtohelpingpatientsandfamilieswithcomplexmedicalandsocialneedstransitionto adultcare.
I’vehadtheprivilegeofworkingwithpatientslivingwithcongenitalorchildhood-acquired conditionswhohavesurvivedintoadulthood.Theirresilience andthatoftheirfamilies continuestoinspireme.I’vealsohadtheprofoundhonorofwalkingalongsidefamiliesduringthe finaldaysofyoungpeoplewhocouldnotovercomethelongoddstheyfaced.Thesecourageous parentsandcaregiversshareaquietstrengththathumblesme;IoftenwonderifIwouldhaveeven afractionoftheirstrength.
AsDirectoroftheAdultCysticFibrosisProgram,I’vewitnessedboththeravagesandthemiraclesof chronicillness.Eachtimeweloseapatient,itfeelslikelosingafamilymember.Ineverexpectedmy professionallifetotakethispath,butIfeeldeeplygratefulfortheprivilegeofcaringforpeople livingwithchronicillness.
IamgratefultotheCaseyfamilyforwelcomingmeintothegrouplastyearafterrunningonmy own.SupportingCourageousParentsNetworkmeansagreatdealtome,asdoesrunningthe FalmouthRoadRaceintheirhonor despitemyownrunningstrugglesthesedays,it’ssomethingI wouldn’tdreamofmissing.
Ahmet’sStory
LauraWill
Laura’sStory
MyselfandmyhusbandDaveNicholsonarebothapartoftheteamthisyear.Hehas runthepastseveralyears,andIamexcitedtorunagain(firsttimesince2021)with theCPNteam.IamgratefultobeabletogivebacktoCPN.BlythandtheCPN communityhavesupportedDaveandmyselfinmanywaysovertheyears.Welivein Concord,MA;withthreeyoungchildren.
Ourmiddlechild,Alden,liveswithsevereneurologicaldisability.I’mproudof makingitthroughthedayeveryday,withasparkofjoy.
CourageousParentsNetwork(CPN)isanonprofit501(c)(3)organizationthat providescurateddigitalresourcesandprogrammingtohelpcaregiversand otherscaringforchildrenwithaseriousmedicalconditionnavigatetheillness journeywithsupportandasenseofcommunity.
AttheheartofCPNareparentandclinicianvoicesthatilluminateandshare thelivedfamilyexperience,focusingonsocial,functional,andemotional needsandthepositiveimpactof“palliative-aware”practices,regardless ofdiagnosisandwithoutbias.
CPNresourcesincludevideoandpodcastinterviewsandeducationalguides, parent-generatedblogs,andaclinicianportalofferingmaterialsforusein self-andcolleagueeducation.FormorethanadecadeCourageousParents Network,anonprofitorganization,hasoriented,equippedandempoweredthose caringforchildrenwithseriousillness.
Vision
Parentsandotherscaringforchildrenwithaseriousillnesshaveconfidencethat theyaredoingtheverybesttheycanforthechildandfamily.
Aspiration
Totransformthefamilyandcareexperience,asitisbothdeliveredand received,sothateveryparentcaringforachildwithaseriousmedical conditionfeelsempoweredandequippedtoadvocatefortheirchildand bethebestparentpossible.
SupportTeamCPN ConnecttotheNetwork
