AboutThisMagazine
CourageousParentsNetwork(CPN)isanonprofit501(c)(3) organizationwiththemissiontoorient,equipandempower familiesandotherscaringforachildwithaseriousmedical condition.
CPN’seducationalresourceshaveasingulargoal:togive parentsconfidencethattheyarebeingthebestpossible advocatefortheirchild.Inpartnershipwithclinicians,CPNseeks totransformthecareexperiencebothdeliveredandreceived.
ThismagazinehighlightsCPN'sinvolvementwiththe2026 FalmouthRoadRace.ThisyearmarkstheseventhyearCPNwill haveateamrunningthissummerevent.
Inthepagesthatfollowaretherunnerstheirstoriesonwhythey arerunningforCPNthisyear.
Fundraising
CPN’sgoalistoraise$60,000allowingCPNtodevelopand launchnewtopicareascriticaltoaffectedfamiliesand providers.
Eachrunnerwillbefundraisingfromtheirfamilies,friends andsupportnetworks.However,anyonecansupportTeam CPN. Youcandonatetodayanditwillgotowardstheteam'sgoal of$50,000.
Tomakeageneralteamdonation: Visittheteampagehere. Stayatthetopofthepageandselectanamountorother ifyoudon'tseetheamountyouwanttodonate. Thenfollowthepromptstosubmityourdonation.
KaraBriggs
LynetteElam
CourtneyFratto
TedHale
CharlieLord
DaveNicholson
MichaelNimeskern
NathanielNugnes
MaryKateO'Brien
BethShank
SteveShaw
JenniferSpiegel
MicheleTorres
AhmetUluer
ShaelynWaller
LauraWill
KaraBriggs
Hi,I’mKaraBriggs!Irecentlybecameafirst-timemomtomyson, Brooks,inMarch,andI’mhonoredtoberunningtheFalmouthRoad RaceinsupportofCourageousParentsNetwork.
AsanemergencydepartmentnurseatBostonChildren’sHospital,I havetheprivilegeofcaringforchildrenandsupportingfamilies duringsomeoftheirmostdifficultmoments.Becomingamotherhas givenmeanevendeeperappreciationforthestrength,resilience, andunwaveringlovethatparentsofmedicallycomplexchildren showeveryday.
I’mproudtosupportCourageousParentsNetworkbecausetheir missionofempoweringandprovidingcompassionateguidanceto familiesfacingseriouschildhoodillnesscloselyreflectsthecareand supportIstrivetoprovidebothasanurseandasamom.Thankyou forhelpingmakeameaningfuldifferenceinthelivesofthese incrediblefamilies.
WhenIwaspregnantwithAndyin2016,everythinglookedperfect.Everytestand ultrasoundtolduswewereexpectingahealthybaby.ButthedayAndywasborn,our worldchangedforever.HewasdiagnosedwithNeonatalMarfanSyndrome,anextremely rare,life-limitingconnectivetissuedisorder.
Overnight,wefoundourselvesnavigatingfeedingtubes,oxygen,BiPAPsupport,countless hospitalstays,andimpossiblemedicaldecisions.WespentmonthsatBostonChildren's Hospitalwhilelearninghowtocareforamedicallycomplexchildandgrievingthefuture wethoughtwe'dhave
ItwastherethatwefoundCourageousParentsNetwork Theirresourcesbecamea lifeline Theyhelpedusunderstanddifficulttreatmentdecisions,preparefor conversationswithAndy'smedicalteam,andnavigatetheemotionalrealitiesof parentingachildwithalife-limitingillness.Mostimportantly,theyremindedusthatwe weren'talone.AndypassedawayshortlyafterhisthirdbirthdayinOctober2019.
Hisbodywasn'tbuilttolast,buthisspiritwasextraordinary.Andywasincrediblysmart, hilarious,patientandsofulloflove.Despiteeverythinghisbodyendured,hefoundjoyin lifeandbroughtittoeveryonearoundhim.Hecontinuestoinspiremeeverysingleday, andwemisshimbeyondwords.
I'mrunningFalmouthtocelebrateAndy'slifeandhonorwhatwouldhavebeenhis10th birthday.EverydollarraisedwillhelpCourageousParentsNetworkcontinuesupporting familiesfacingtheunimaginablewithcompassion,guidance,andhope justastheydid forours.
Thisyear,IamhonoredtoonceagainruntheFalmouthRoadRaceinsupportofCourageous ParentsNetwork(CPN),anorganizationwhoseimpactIhavewitnessedbothpersonallyand professionally.
AsaPediatricNursePractitionerintheMedicalIntensiveCareUnitatBostonChildren'sHospital,I havetheprivilegeofcaringforchildrenwithseriousillnessesandsupportingtheirfamilies throughsomeofthemostdifficultmomentsoftheirlives Everyday,Iseethetremendousvalueof resourcesthathelpfamiliesfeellessalone,moreinformed,andbettersupported Courageous ParentsNetworkprovidesexactlythat
Lastyear,IranaspartofTeamCPNinhonorofParentChampionKelseyandherdaughterStella. Theirstory,Kelsey'sstrength,andcarryingthememoryofherdaughtermadetheexperience incrediblymeaningfulandremindedmewhythismissionmatterssomuch.
Whatmadelastyear'sraceevenmorespecialwassharingitwithmy13-year-olddaughter Together,wetrainedfortheraceandcrossedthefinishlinesidebyside.Throughtheexperience, shediscoveredthepowerofsettingagoal,workinghardtoachieveit,and,mostimportantly, helpingothers.Watchingherconnecttoacauselargerthanherselfwasoneofthemost rewardingpartsofthejourney.
Thisyear,I'mrunningagainbecauseIknowfirsthandhowimportantCPN'sworkisforfamilies navigatingunimaginablechallenges Thefundsraisedhelpensurethatparentshaveaccessto compassionateguidance,educationalresources,andacommunitythatunderstandswhatthey aregoingthrough
Ifyouareable,pleaseconsidersupportingmyfundraisingefforts.Everydonation,nomatterthe size,helpsCourageousParentsNetworkcontinuetoprovidehope,connection,andsupportto familieswhoneeditmost.Thankyouforyourgenerosityandforhelpingmakeadifferencefor theseextraordinarychildrenandfamilies
MynameisTedHaleandI’mhonoredtobe wasintroducedbyourfriendsDaveandLau runningthisyear.TheirsonAldenhasaneu amrunningtosupportAldenandhisentirefamily.
MywifeandIhaveknowntheNicholsonssincebeforewehad childrenandwehaveexperiencedtheirfamily'scouragefirsthand sinceAlden'sdiagnosis.Weareheretosupportthemandeveryother CourageousParent!
IliveinSudbury,MAwithmywifeMaggie,mydaughterMay(8)and mysonHayes(6).Theywillbecheeringusonfromthesidelines!
IamsoexcitedtoruntheFalmouthRoadRaceforCPN.Asyoulikley knowmywonderfulwifeBlythfoundedCPN-inspiredbyourdaughter Cameronandtheamazingpeoplethathelpedusmakethearcofher lifefullandbeautiful.IamrunningforCameronandfordearHaviLev GoldsteinwhoissuchaninspirationforBlythandforme.
ThankyousomuchforsupportingCPNsothatitcanreachevermore familiescaringforchildrenwithseriousillnessandsupportmoreand moreclinicianswhowanttoprovidethelovingandcompassionate carethatwesovaluedinthecarethatCameronreceived.
WhenAldenwasdiagnosedwithPMG,araregeneticbrain malformation,ourfamilywasforeverchanged.CourageousParents Network(CPN)isanamazingresourcethatLauraandIhave accessedthroughoutourjourney.CPNhelpedusfindourway throughthefogofgriefthatenvelopedusafterAlden'sinitial diagnosisandwecontinuetoturntothemaswenavigatethe complexdecisionsthatarerequiredasparentsofamedically complexchild.
IamthrilledtobesupportingCPNbyjoiningtheirteamagainforthe 2026FalmouthRoadRace,myfifthconsecutiveyearsupportingthis greatclause.
Ifyouwanttoknowmoreaboutourjourney,checkoutLaura'swebsite here:https://www.adragonmomswords.com/.
MynameisMichaelNimeskern.IamaLeadEngineerworkingin SeaportBoston.IgrewupontheSouthShoreandspendmyfreetime enjoyingallthingsoutdoors.ThisismyfirsttimerunningtheFalmouth RoadRace.
BeingabletosupportCourageousParentsNetworkistrulyanhonor.I becameawareofthisorganizationaftermeetingmyfiancée,as someofherfamilymemberswereabletofindtheguidancethey neededduringanincrediblydifficulttime.Theirstoryhasalways stayedwithme,anditwasano-brainertojointheCPNteamformy firstFalmouthRoadRace.
Thankyouallforyoursupportsofar—lookingforwardtoraceday!
Hieveryone!MynameisNathanielNugnes,andI'manengineer currentlyworkingonamarineconstructionprojectattheU.S.Navy BaseinGroton,Connecticut.
IgrewupinBarnstable,Massachusetts,andI'vealwayswantedtorun theFalmouthRoadRace,butIneverhadthechance.Thisyear,I'm finallymakingithappen,andI'mhonoredtoberunninginsupportof theCourageousParentsNetwork.
CPNisanincredibleorganization,andI'veseenfirsthandthe meaningfulimpacttheyhaveonfamiliesfacingunimaginable challenges.Supportingtheirmissionthroughthisraceistrulyan honor.
I'mincrediblyexcitedtobepartoftheteamandcan'twaittosee everyoneonraceday!
ThisismyfourthyearrunningtheFalmouthRoadRacetoraise moneyandawarenessforCPNandI'mverygratefulforthe opportunity.
CPNisaremarkableorganizationdedicatedtoprovidingsupportand knowledgeforchildrenwithseriousillnessesandtheirfamiliesand caregivers.CPNisapricelessandtrustedresource.Itprovides informationandpersonalexperienceswiththegoaloforientingand empowering.
Anydonationisgreatlyappreciated! Iknowthistrainingandtherace willnotbeeasy;butwhenitgetstough,Iwillfocusonwhatthese familiesandcaregiversgothrougheveryday.
IamexcitedtoberunningmyfirstASICSFalmouthRoadRaceinsupportof CourageousParentsNetwork(CPN),andIamdeeplygratefulforthe opportunitytoraisefundsforsuchanimpactfulorganization.
IliveinChicagowithmyfamilyandourpets.Irecentlycompletedmy MasterofSocialWork(OhioStateUniversity)andinternedwiththe pediatricteamatLightwaysHospiceinChicago,whereIdevelopedand launchedacaregiversupportgroupforfamiliesofpediatricpatients.The opportunitytosupportfamiliesduringsomeoftheirmostchallenging momentshasbeenespeciallymeaningfultome,andIamrunningin honorofthosefamilies.
Throughmywork,IhavebenefitedfrommanyCPNwebinarsand workshopsandhavefrequentlysharedCPN'sresourceswithfamiliesIhave supported.Ihaveseenfirsthandhowvaluablecommunity,connection,and companionshipcanbeduringdifficulttimes.
ThankyouforsupportingmyraceandhelpingCourageousParents Networkcontinueitsimportantworkforfamiliescaringforchildrenwith seriousillness.
PleasejoinmeinsupportingCourageousParentsNetworkasIrunthe FalmouthRoadRacethisAugust16th.I'llberunningandraising moneyinhonorofmydaughterEmerson,whodiedinJuneof2016 fromararegeneticdisorder.
Thisyearmarksthe7thtimemywife,SarahCasey,hasorganizeda charityteamfortherace,my6thyearrunning,andnowEmerson's sister's4thruninthechildren'srace!Whatstartedoutasawayto honorEmersonhasbecomeanimportanttraditionforourfamilyand awaytosupportotherfamiliesfacingdifficultcircumstancesand impossiblechoices.
CourageousParentsNetworkprovidesresources,guidance,and communityforfamiliescaringforchildrenwithseriousillness— supportweknowcanmakeadifference.
IamaNYC-basedprivatefundslawyerwhohasbeenrunningforover30years now.IhavefollowedCPNsinceitscreationbecauseitwasfoundedbyacollege classmateofmine,BlythLord.Earlyon,Irealizedsomeofthearticlessheposted ontheCPNsitehadamuchbroaderreachthantheimmediatecommunityof familiesofmedicallycomplexchildren.Onearticleinparticular about anticipatorygrief trulyresonatedwithmebecauseIrealizeditwasessentially aboutlearningtolivein,andappreciate,thepresentmoment somethingwe canalllearntodobetter.
So,asanavidathlete,IwasveryeagertoparticipateinCPN’sfirstfundraising foraythroughtheFalmouthRoadRace.Thefirstyearwoundupbeingremote weranthesamedistancenearBlyth’shomenearBoston,evendoingastretch alongtheBostonmarathon’sheartbreakhill.Itturnedouttobethehighlightof the2020summerforme,notjustbecauseoftherunningandtherare opportunitytoleavemyapartmentinNYCandseepeople,butbecauseofthe opportunitytospendtimewiththeCPNcommunity.Duringthelonelytimesof COVID,withnoendinsightatthatpoint,Iwastrulyupliftedbytheexperience.It impresseduponmethepowerandimportanceofcommunity.
IamveryexcitedtoberunningwithTeamCPNonceagainthisyearandcontinue tobeinspiredbyallthatCPNdoesandthecommunityofsupportithascreated.
RunningFalmouthRoadRacewithTeamCPNthisyearhasspecialmeaningasIwillberunningin memoryofourbelovedson,Mateo,whodiedonValentine'sDay FollowingMateo'sdeath,Johnny toldushewantedtochangehisnametoQuinnashenolongerfeltlikeJohnnyasMateoand Johnnyalwayswenttogether Veryearlyinlife,Mateowasmetwithalitanyofthingshewould neverbeabletodo Hislimitationswerereal,buthisdriveanddeterminationfarexceeded predictions Mateotaughtusthatnodiagnosiscandefinewhowearenordeterminethe differencewemakeinthisworld
Mateo’sabilitytocommunicatehisdesiresanddreams,ridehisadaptivebike,windsurf,danceall nightattheBostonCollegeCampusSchool’ssemi-formalsinhisgaittrainer,collectdollarbills duringhisworkwiththecoffeecart,andsetnewrecordswalkinginhisgaittrainer,neverceased toinspireallofuswhoknewandlovedhim.Mateohadseizuressinceinfancy,multiple hospitalizationsforrespiratoryillnesses,andeightsurgeriesduringhislife.Healwaysrecovered withcourage,perseveranceandresilience.
Ashismothers,wenavigatedtheworldofhismedicalchallengesandserviceswithdogged determination,skillandasenseofjustice.MateowillberememberedastheambassadorofLove ashealwaysconnectedustoextraordinarypeople,includingBlythLordandTheCourageous ParentsNetwork.CPNhasbeenimportanttomeasbothapediatricchaplainandasaparent.
IamrunningforCPNincelebrationofMateo'scapacitytosharehislovewithsomanypeopleand tonevergiveup.Duringthelastyearofhislife,Mateowentfrombeingabletowalkonly4-5steps, afterbeingconfinedtoabedintheICUfor5months,tobreakinghisalltimewalkingrecordinhis gaittrainerwith1300+stepswithhisdogAmigaalongtheMysticRiver!Pleasejoinmein supportingCPNtocontinuetheirworktobringlifechangingresources,accompaniment,and hopetofamilieswithachildwithalifethreateningandchronicillness
IhaveapersonalconnectiontoBlythLordasafellowParkSchoolparent,anda professionalonethroughoursharedfocusonsupportingparentsandclinicians caringforfullydependentyoungadultstransitioningtoadulthood.Inmyroleas DirectoroftheBRIDGESProgramatBostonChildren’sHospital,Ileadateamof nursepractitioners,atransitioncoordinator,andsocialworkersdedicatedto helpingpatientsandfamilieswithcomplexmedicalandsocialneedstransition toadultcare.
I’vehadtheprivilegeofworkingwithpatientslivingwithcongenitalorchildhoodacquiredconditionswhohavesurvivedintoadulthood.Theirresilience andthat oftheirfamilies continuestoinspireme.I’vealsohadtheprofoundhonorof walkingalongsidefamiliesduringthefinaldaysofyoungpeoplewhocouldnot overcomethelongoddstheyfaced.Thesecourageousparentsandcaregivers shareaquietstrengththathumblesme;IoftenwonderifIwouldhaveevena fractionoftheirstrength.
AsDirectoroftheAdultCysticFibrosisProgram,I’vewitnessedboththeravages andthemiraclesofchronicillness.Eachtimeweloseapatient,itfeelslikelosing afamilymember.Ineverexpectedmyprofessionallifetotakethispath,butIfeel deeplygratefulfortheprivilegeofcaringforpeoplelivingwithchronicillness
SupportingCourageousParentsNetworkmeansagreatdealtome,asdoes runningtheFalmouthRoadRaceintheirhonor.
MynameisShaelyn,or"ShaeShae"asmypatientscallme.Ihavebeena pediatricnursesince2015,startingmycareerasapediatricpalliativecare andhospicenurseinMAandhavecaredformedicallycomplexchildren andtheirfamiliesmywholecareer.
DuringmyyearscaringforthosewithacutechronicandterminalillnessesI learnedaboutCourageousParentsNetwork(CPN).CPNhasactedasa vitalsupporttothefamiliesinmakingdelicateandimportantdecisionsas wellasprovidingasafeplaceforfamiliestoexpresstheirfeelingsabout unimaginablesituations.Asaprovider,IhavebeenabletouseCPNtofind resources,mentors,andtoolstobetterunderstandwhatfamiliesareup againstintheirdailylives.HavingCourageousParentsNetworktorefer familiesandtouseasapersonalresourcehasallowedmetobeabetter nurseandpalliativecareprovider.Iamaskingforsupportinreachingmy fundraisinggoal!Allofthemoneyraisedwillbedonatedtothe CourageousParentsNetworktohelpthemtocontinuetodotheamazing workthattheydo.IwillberunningonAugust16th,perthescheduled FalmouthRoadRace.ThisisoneofmyfavoriteracestorunandIamso happytobeabletorunagainforthisimportantandcherished organization.Thankyousomuchforyoursupport!!
I’mrunningtheFalmouthRoadRacetosupportCourageousParents Network,anonprofitthatprovidesguidance,community,and practicalresourcestofamiliescaringforchildrenwithseriousorlifelimitingillnesses.IbelievesostronglyinthemissionofCPNthatIhave joinedtheirteamas"storycurator,"(bestjobtitleever).Imeetwith parentsandclinicianswhohaveexpertiseandwisdom,andhelp themcraftblogsthatarerelevantandinformative.CPNsworkhelps parentsfeellessaloneduringsomeofthehardestmoments imaginable,whilealsosupportingbettercommunicationand compassionate,palliative-awarecareforchildrenandfamilies.
Asaparentofachildwithalife-limitingillnessmyself,thiscauseis deeplypersonal.DaveandIhavebenefitedfromtheguidanceofCPN throughthelastsixyears.
Donatingtothisfundraiserhelpsensureotherfamiliesandclinicians canaccesseducationandconnectionwhentheyneeditmost.
AboutCPN
CourageousParentsNetwork(CPN)isanonprofit501(c)(3) organizationthatprovidescurateddigitalresourcesand programmingtohelpcaregiversandotherscaringforchildrenwitha seriousmedicalconditionnavigatetheillnessjourneywithsupport andasenseofcommunity.
AttheheartofCPNareparentandclinicianvoicesthatilluminateand sharethelivedfamilyexperience,focusingonsocial,functional,and emotionalneedsandthepositiveimpactof“palliative-aware” practices,regardlessofdiagnosisandwithoutbias.
CPNresourcesincludevideoandpodcastinterviewsandeducational guides,parent-generatedblogs,andaclinicianportaloffering materialsforuseinself-andcolleagueeducation.Formorethana decade,CourageousParentsNetwork,anonprofitorganization,has oriented,equipped,andempoweredthosecaringforchildrenwith seriousillness.
Vision
Parentsandotherscaringforchildrenwithaseriousillnesshave confidencethattheyaredoingtheverybesttheycanforthechild andfamily.
Aspiration
Totransformthefamilyandcareexperience,asitisbothdelivered andreceived,sothateveryparentcaringforachildwithaserious medicalconditionfeelsempoweredandequippedtoadvocatefor theirchildandbethebestparentpossible.
