Meet the Amazing 15 People Running Falmouth Road Race for CPN

MeetTheAmazing15People RunningFalmouthRoadRace forCPN

AboutThisMagazine

Caringforachildwithaseriousillnessislikerunningalong-distance race.Itcanbelonelyandexhausting,anditisveryverydifficult.Aswith running,withtherightsupport,endurancebuildsandfamiliesbecome moreresilient.Withtimeandguidance,familiesfeelempoweredand abletocopewiththechallengestheyface.CourageousParents Network(CPN)providesthatsupportandguidancetocaregivers.

ThismagazinehighlightsCPN'sinvolvementwiththeFalmouthRoad Race.2023marksthefourthyearCPNwillhaveateamrunningthis summerevent.

Thisyear,TeamCPNismadeupof15 enthusiastic,committedrunners participatinginthe2023AsicsFalmouthRoadRace.Inthepagesthat followwefeaturethoserunnersandsharetheirstoriesonwhytheyare runningforCPNthisyear.

Ourgoalistoraiseatleast$25,000,allowingCPNtodevelopand launchnewresourcesvitaltoaffectedfamiliesandproviders.Resources thatwillhelpparentsandothersfeeltheyaredoingtheverybestthey canfortheirchildandfamily.Becausenoparentshouldfeelaloneonthis journey.

Fundraising

CPN'sgoalistoraiseatleast$25,000,whichwillfurtherallowCPNto developandlaunchnewresourcesvitaltoaffectedfamiliesand providers.Resourcesthatwillhelpparentsandothersfeeltheyaredoing theverybesttheycanfortheirchildandfamily.

Eachrunnerwillbefundraisingfromtheirfamilies,friendsandsupport networks.However,anyonecansupportTeamCPN.

Youcandonatetodayanditwillgotowardstheteam'sgoalof$25,000.

Tomakeageneralteamdonation: MakeaDonation

Visittheteampagehere.

Stayatthetopofthepageandselectanamountorotherifyoudon't seetheamountyouwanttodonate. Thenfollowthepromptstosubmityourdonation.

RelevantBlogs

TheFalmouthRoadRace,TeamCPN,andTheStoriesthatCarryUs

RunningtheFalmouthRoadRace(virtually)forCPN:AFamilyand PediatricProviderAffair

RunningintheSunforOurChildrenandTheirChildren

TheEnduranceWeDidn'tChoose

RunnersfromAcross theCountry

SteveShaw

SarahCasey

JessicaKaris

ShaelynWaller

TomQuinn

KellyQuinn

AliciaCasey

ReneeDelman

NicoleKraese

MicheleTorres

MaryKateO'Brien

MicheleHagerstrom

DaveNicholson

JenniferSpiegel

RobinLyons

SteveShaw

Steve'sStory

Sevenyearsago,welostourdaughter,Emerson,toararegeneticillness. TwomonthsafterrelocatingfromSeattletoVermont,wediscoveredthat ourseeminglyhealthydaughterwouldlikelynotlivetoseetwo.Shedied inJune2016at16monthsold.

Throughoutherjourney,wereceivedtremendoussupportfromfriends, family,andmedicalproviders,aswellastheCourageousParents Network(CPN).CPNisanonlinesupportnetworkforparentsand caregiversofseriouslyillchildren,offeringresourcesbasedonfirsthand experiencesandexpertguidance.Theyhelpedusfeelempoweredin caringforEmersonandconnectedustoasupportivecommunity.

SarahCasey

Sevenyearsago,ourdaughterEmersondiedfromType2Gaucher's,araregenetic illness.TwomonthsafterrelocatingfromSeattletoVermont,wediscoveredthat ourseeminglyhealthydaughterwouldlikelynotlivetoseetwo.ShediedinJune 2016at16monthsold.

Throughoutherjourney,wereceivedtremendoussupportfromfriends,family,and medicalproviders,aswellastheCourageousParentsNetwork(CPN).CPNisan onlineresourceforfamiliesandmedicalproviderscaringforseriouslyillchildren, offeringresourcesbasedonfirsthandexperiencesandexpertguidance.They helpedusfeelempoweredincaringforEmerson,allowingustogiveherthebestlife possible.

I'vestayedinvolvedwithCPNoverthesepastyearsinvariouscapacities,my favoritebeingcoordinatingCPN'sFalmouthRoadRaceteam.ThisyearI'vedecided tonotonlycoordinatetheteam,buttoalsodotherace!I'llbeparticipating,along withafewotherteammates,inthevirtualoptionwhichtakesplacetheweekbefore thein-personrace.I'mlookingforwardtocompletingthe7milesinhonorof familieslikeours.Iwouldbegratefulforanysupportyoucanoffer.Noamountis toosmalltomakeadifference!

Jessica'sStory

Becomingaparentisoneofthehardestandmostjoyfulthingsanyonecando. BringingSebbyintotheworldwasthescariestandmostfulfillingthingI'veever doneandIwoulddoanythingforhim,asIknowanyparentwould.Parentswhoare takingcareofchildrenwithserioushealthissuesaretrulysuperheroeswhodeserve asmuchsupportandasmanyresourcesaspossible.Itisbeyonddifficult.Noone shouldeverhavetodothatalone.CourageousParentsNetworkmakessurethat familiesdon'thavetodoitalone.Thisincredibleorganizationprovidesguidance andhelptofamiliesofchildrenwithseriousillness.Theyempowerfamiliesand makesurethattheydon'twalkthischallengingparentingpathalone.

IamrunningtheFalmouthRoadRacethisyearforthefirsttimeasamomma,andI amthrilledtoberunninginhonorofCPNandthefamiliesandchildrenthatthey support.

JessicaKaris

ShaelynWaller

MynameisShaelyn,or"ShaeShae"asmypatientscallme.Ihavebeenapediatric nursesince2015,startingmycareerasapediatricpalliativecareandhospicenurse inMA.IamcurrentlyapediatricacutecarenursepractitioneratTheChildren's HospitalofPhiladelphia,caringformedicallycomplexchildren.

Duringmyyearscaringforchildrenandfamilieswithacutechronicandterminal illnessesIlearnedaboutCourageousParentsNetwork(CPN).CPNhasactedasa vitalsupporttothefamiliesinmakingdelicateandimportantdecisionsaswellas providingasafeplaceforfamiliestoexpresstheirfeelingsaboutunimaginable situations.Asaprovider,IhavebeenabletouseCPNtofindresources,mentors, andtoolstobetterunderstandwhatfamiliesareupagainstintheirdailylives. HavingCourageousParentsNetworktoreferfamiliesandtouseasapersonal resourcehasallowedmetobeabetternurseandpalliativecareprovider.Iam askingforsupportinreachingmyfundraisinggoal!Allofthemoneyraisedwillbe donatedtotheCourageousParentsNetworktohelpthemtocontinuetodothe amazingworkthattheydo.IwillberunningonAugust20th,perthescheduled FalmouthRoadRace.ThisisoneofmyfavoriteracestorunandIamsohappytobe abletorunagainforthisimportantandcherishedorganization.

Shaelyn'sStory

TomQuinn

Tom'sStory

MywifeKellyandIarethrilledtoberunningtheFalmouthRoadRacethisyearnearlyoneyearafterbeingmarriedrighthereinFalmouthHeights!

Thisisourfirstyearrunning,andwearesothrilledtoberunninginsupportofthe CourageousParentsNetwork,anon-profitorganizationthatorientsandempowers parentsandotherscaringforchildrenwithseriousillness,byprovidingresources andtoolsthatreflecttheexperienceandperspectiveofotherfamiliesand clinicians.

KellyandIarebothphysicianspracticinginBoston.TheCourageousParents Networkhasbeenaninvaluableresourceforusandforourpatients,sothatwemay all"NeverWorryAlone".

KellyQuinn

MyhusbandTomandIarethrilledtoberunningtheFalmouthRoadRacethisyearnearlyoneyearafterbeingmarriedrighthereinFalmouthHeights!

Thisisourfirstyearrunning,andwearesothrilledtoberunninginsupportofthe CourageousParentsNetwork,anon-profitorganizationthatorientsandempowers parentsandotherscaringforchildrenwithseriousillness,byprovidingresources andtoolsthatreflecttheexperienceandperspectiveofotherfamiliesand clinicians.

TomandIarebothphysicianspracticinginBoston.TheCourageousParents Networkhasbeenaninvaluableresourceforus-especiallytobeabletosharewith ourpatients,sothatwemayall"NeverWorryAlone".

Weappreciateanyandalldonationsforthistrulywonderfulcause.

AliciaCasey

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

Manyofmypatientsandcolleagues,mysister-in-lawandbrother-in-law,andIhave benefitedfromCPNresources.IamsogratefultoCPNforthesupportthatthey provideasithelpsmetotakebettercareofmypatients.

Thisyear,IwillberunningtheFalmouthRoadRaceinhonorofCourageousParent Network.TheCPNhasbeenandcontinuestobeanincredibleresourceforparents andfamiliesofcomplexmedicalchildren,likeours.Thereisahugevideolibrary, robustparentblogs,andmanyvirtualeventsforparentsandfamilymembersto accessfreeofcharge.Thisinformationcovershowtoprocessandcopewitha difficultdiagnosisandprognosis.Itsupportsparentsandfamilies24/7.

CPNhasgivenmeaplacetogowhenIhavefeltalone,heartbroken,andafraid.CPN helpedmebuildresiliencethroughotherfamilies’storiesandremindedmethat thereisawholecommunityofparentsandfamilieswhoarebrave,beautiful,and incredible.Iamnotaloneonthisjourney.

CPNhasbeenthereformewithanswersinthemiddleofthenightand encouragementwhenIdidn’tknowhowtogetthroughthenextday.Iamhonored torunforthem.IhumblyaskforyoursupportasIraisemoneyandawarenessfor thisamazingorganizationandforwhattheygivetofamilieslikemine.Everydollar isappreciated.Everysteptaken,everymilecompletedisforCPN,parentslikeme, andforthesweetchildrenandbabiesweloveandwoulddoanythingfor.Ithank yousosomuchforyourloveandsupport.

NicoleKraese

Nicole'sStory

MicheleTorres

IamexcitedtoruntheFalmouthRoadRaceonAugust20,2023withTeamCPN.The CourageousParentsNetworkhasbeenextremelyimportanttomeasbotha pediatricchaplainandasaparent.Itisoneofthefewwebsitesthatisaccessiblein bothEnglishandSpanish.

CheckoutthisvideoofhersonMateoshootingforthestarsinLokomat!

Michelle'sStory

MaryKateO'Brien

MynameisMaryKateO’BrienandIamhonoredtoberunningthisyear’sFalmouth RoadRaceforCPN.IfirstlearnedoftheincredibleworkofCPNin2021throughmy dearfriendDr.AliciaCasey.AliciaandImetonthecross-countryandtrackteamsat theCollegeoftheHolyCrossyearsagoandhaveremainedfriendseversince.

Alicia'sclosefamilymemberutilizedtheservicesofCPNandwhatIdiscovered throughAliciaishowunconditionallysupportive,educationalandlovingCPNwas inatimethatwasincomprehensiblydifficult.Aliciaaskedmethatyeartorun FalmouthraisingmoneyforCPNandIdidnothesitate.Iwasaffordedthe opportunityagainthisyearandIhopetoexceedmyfundraisinggoalsandspread awarenessofthisincrediblenonprofit.

Ihavethefantasticjobofsupportingfamiliesofchildrenwithraregenetic disorders,medicalcomplexities,andseriousillnessatMaryBridgeChildren's hospitalinTacoma,WA.IamtheNurseManagerforourComplexPrimaryCare, PalliativeCare,andPhysicalMedicine&Rehabclinics.Eachdayisdifferent, humbling,andinspiring.Thechildrenandfamilieswesupportaresomeofthemost amazing,courageous,fierce,loving,andoftenfunnyhumansthatIhaveevermet. Theynavigateacomplicatedhealthcaresystem,jugglingmultipleproviders, appointments,procedures,equipment,andmedicationswhiletryingtocarefor theirchildandlivelife.Theyfighteverydayforservices,inclusion,andequipment (suchashospitalbeds,medicalstrollers,andsupportiveseating)whiletryingto loveandcarefortheirchild.Allthis,whilemakingdifficultmedicaldecisionsalong theway.

IamgratefulfortheworkCPNdoesandfortheamazingsupporttheyprovideto families,caregivers,andhealthcareproviders.Iamsoexcitedtoraisemoneyand runforTeamCPNagainthisyear.Thankyouforhelpingtosupportthesespecial childrenandtheiramazingfamilies!

MicheleHagerstrom

Michele'sStory

DaveNicholson

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

IamthrilledtobesupportingCPNbyjoiningtheirteaminthe2023FalmouthRoad Race.LauraandIbothrantheracein2021butshewastheonlyonetofundraiseso nowit'smyturntogiveback.

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

Dave'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.

JenniferSpiegel

Jennifer'sStory

RobinLyons

Robin'sStory

Itrytoremindmyselfthatnoteveryoneisluckyenoughtobeabletorunarace,it's bothajoyandaprivilege.

IrunformysonTimmy.Hewas22yearsoldandtragicallypassedawayfrom injuriessustainedinanATVaccident.It'sbeen3yearsbuttheheartbreakwill alwaysbethere...it'sunimaginableandIfindrunninghelps!Ialsorunforour friend'ssonFrankiewhosadlypassedawayinSeptember2022fromanextremely raredisease.Frankiewaswheelchair-boundandlosthiseyesightandhearingfrom thedebilitatingdisease...Ithinkofhim,tooandhowhecouldn'twalknevertheless run.So,IrunandhopetoraisefundsforCPNtohelpotherfamiliesfacedwithlifechangingsituations...it'sajourneynoparentshouldwalkalone.

Thosearemywhy's.....FRRisabeautifulsceniccourseanditbringsasmilewhen I'mhittingthepavementandhearingallthecheeringfromthespectators...it'sjust thebestfeeling.Now,ifmykneesholdupthatwouldbeamazing!

OurPurpose

Toorientandempowerparentsandotherscaringforchildrenwithseriousillness, byprovidingresourcesandtoolsthatreflecttheexperienceandperspectiveof otherfamiliesandclinicians.

OurVision

Parentsandotherscaringforchildrenwithseriousillnesshaveconfidencethat theyaredoingtheverybesttheycanforthechildandfamily.

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.