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8/3/2019 A Hydrocephalus Manifesto
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DavidM.Phillips,M.S.
c o er ,
8/3/2019 A Hydrocephalus Manifesto
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Thisdocumentisofferedtos urdiscussionamon eo le
livingwithhydrocephalus(hydros)andoursupportersaboutthestructure,use,andcontrolofresourcesintended
o mprove equa yo our vesan ourcare. e
observationsandproposalscontainedhereinarebasedon
thewritersexperienceswithinthehydrocephalus
communityandwithotherdiseasecommunities,including
breastcancer,HIV,andotherneurologicdiseases.
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Hydrosarewoefullyunderservedbyallstakeholdergroupsrelatedtoourdisease,includingourownranks.Inspiteoftheorganizationscreated,themoniesspent,andtheincreasingpersonalachievementsofhydrosundeterredbyourdisease,thenatureofandconcernsabouthydrocephalusrea men an care avec ange eover e as ree
decades.
Atthistime,onlyastructuralrevolutioninthehydrocephaluseco ogy,coup e w egrea erengagemen o y rosaalllevelsofaction,canensurethatourneedsareadequatelyunderstoodandaddressednowandinthefuture. This
profoundchange.
Nooneaskedifwewantedhydrocephalus,butwecan.
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Princi les1. Hydrosmustbeconsideredfullpartnersinourcareandin
thedirectionofallactivitiessurroundinghydrocephalus
education,support,advocacy,andresearch.Wearecapable
andtalented,andweappreciatetheengagementofour
lovedonesandourallies.
Failingtoincludehydrosinotherthantokenrolesinthe
governanceoforganizationsintendedtobenefitourcommunity
furtherstigmatizesourconditionandtreatsusasobjects,not
Anygroupviolatingthisprincipledoesnottrulyserveour
interestsandtheinterestsofgenerationsofhydrostocome.
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Princi les2. Thegoalofa cureisdeceptiveandunattainable. Hydrocephalus
hasmanycauses,eachwithitsownpreventativesolution;anda
un versa treatment s mp aus e. mprovements n now e ge
abouthydrocephalusprevalenceandincidence,diagnosis,
treatmentselection,treatmentoutcomes,andthequalityoflife
forhydrosarehowwewillmeasuresuccess.
hemorrhage,tumor,andotherrootcauses. Itdoesnottakeamedical
degreetounderstandhowdifferentthosecausesmaybe,how
,
maynotbenefitothers. Thereare,however,advancesinknowledge
andmedicalpracticethatwillbenefitallhydros;andwemustusethe
. .
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Princi les3. Attemptingtobeallthingstoallpeoplemakesforlittledonewellandfewsatisfiedcustomers. Wepromotespecialized
z w x yw w
othersonourbehalf.
Educationandsupport,nurturingresearch,andadvocacyeachrequirespecificskillsetsandknowledgetobeconductedandmana edwell. Inthereactive newbornstateofahealthmovement,suchaswhereHIVwas25yearsago,onemightexpectsmallerorganizationstoperformallofthesefunctions.Yet asmovementsmature the re uirelar eror anizationsto
dotheonethingwhichtheydowithexpertiseandmaturity. Toimprovetheeffectivenessofourresourcesandtoachievetheadvanceswedesire theh drocommunit mustcomeofa einthisregard.
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Princi les4. Wewillnotbepittedagainstotherdiseasecommunities,
evenaswepointoutdisparitiesintheresourcesallocatedto
hydrocephalusincomparisontootherdiseases.
n ac ,wew s oemu a e esuccesseso o ercommun es
inhighlightingtheirurgentneedsandinmarshalingresourcesto
theircause. Wewillcollaboratewithalliedcommunities
wheneverpossible. Wedonotwantanyothercommunitys
pieceofanypie:thepiemustbelargeenoughforallofus.
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Princi les5. Transparencyandaccountabilityareneveroptional. Our
healthandqualityoflifecannotbehostagetoconflictsof
interestandimproperactions.
ss ewar so reasure resources,ourorgan za onsan e r
officersmustcommittothehighestethicalstandardsin
governance,operations,andfundraising. Whenweseek
financialsupportfortreatmentadvances,75%offundsshould
notbespentonoperatingcosts. Controlofcharitableworks
influencesorpotentialselfdealingcannotdictatethe
knowledgeorservicesdeliveredtothecommunity.
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Duplicationofeffortsleadstooverallinefficiency,inconsistent
messaging,andlackofasharedvisionandstrategy
H drosexcludedfrom overnanceathi hestlevels
orgB
Org
C Knowledgeisnotwidelyshared,evenwiththosewhomay
benefitthemost
TransparencyisillusiveEducation
orgAEducation
oopera on srareEducation
Support
advocacy
researchsupport
Support
advocacy
researchsupport
orgE
orgF
Support
advocacy
researchsupportEducation
advocacy
orgDEducationsupport
advocacy
e ucation
support researchsupport
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Hydrossetprioritiesandleadatalllevels
Boardmembersacceptpersonalresponsibilityfor
Research
Support
Org
Duplicationisminimal Qualityofactivitiesincreases;messagingis
consistent
Transparencyandcooperationarebuiltin
Eachorgcollaborateswithallieddisease
Advocacy
Org
Education
&Support
Or
commun yorgs
EachorgparticipatesinrelevantBig
Pictureorgs,e.g.Natl.HealthCouncil,
OneMindforResearch
Qualityoflifeforhydrosandknowledgeaboutthediseaseare
con nua y mprove
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strictlyforthepurposeofreceivingmoneythatisgrantedtoresearchersinmanydisciplinestoimproveknowledge,treatment,
andqualityoflife Promotesinvestigationofareasnotbeing
fundedbyNIH,DoD,others
Isabletogiveasmallpercentageofreceiptsdirectlytoadvocacyorganization
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establishedstrictlytoinformallstakeholders
, ,
hydrocephalus;andtoconnecthydrosand
,
toformsupportiveinterpersonalnetworks.
treatmentorresearch
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policymakersatalllevelsonbehalfofthe
Educatesandtrainsmembersofthe
advocates
ece ves un ng romc ar ta e
organizationstotheextentallowedbylaw
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Conductahydrocephaluscommunityneeds
assessment
Therequirementsofhydros,notthe
asp rat onso anyot ergroups,must r ve
our
direction
going
forward o c t nputt roug ex st ngon ne
communities
ursuet eengagemento prev ous y
unengagedhydros,families,caregivers,
an concerne n v ua san ent t es
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Definetheorganizationsrequiredtomeet
theneedsofthehydrocommunityEstablishneworganizationsfromwhatthe
communitywouldsalvageofexistinggroups,
withnewcomponentsasneededHydrosmustenvisionanddirectthere
constructionoforganizationsandhold
majoritypositionsintheirnewboards
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Reintroducethenewhydrocephalus
movementtothelargerneuroscience,healthcommunities
Engagewithalliedcommunities,e.g.Spina
Bifida,Alzheimers,ParkinsonsIntegratewithlargeradvocacyand
researchmovements,e.g.NationalHealth
Council,OneMindforResearch
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Validatethisapproachwiththecommunity
Identifyhydrowarriorscapableofworkingtogethertopromoteandrealizetheagenda
Enlistthesupportofexistingandnewallies
Reportprogressregularlybacktothe
community
CommentsarewelcomebyemailorontheHydrocephalus
Manifestoblog:http://hydromanifesto.wordpress.com
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