8/3/2019 A Hydrocephalus Manifesto

1/17

DavidM.Phillips,M.S.

c o er ,

hcpsage@gmail.com

8/3/2019 A Hydrocephalus Manifesto

2/17

Thisdocumentisofferedtos urdiscussionamon eo le

livingwithhydrocephalus(hydros)andoursupportersaboutthestructure,use,andcontrolofresourcesintended

o mprove equa yo our vesan ourcare. e

observationsandproposalscontainedhereinarebasedon

thewritersexperienceswithinthehydrocephalus

communityandwithotherdiseasecommunities,including

breastcancer,HIV,andotherneurologicdiseases.

10/9/2011 2AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

3/17

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.

10/9/2011 3AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

4/17

Princi les1. Hydrosmustbeconsideredfullpartnersinourcareandin

thedirectionofallactivitiessurroundinghydrocephalus

education,support,advocacy,andresearch.Wearecapable

andtalented,andweappreciatetheengagementofour

lovedonesandourallies.

Failingtoincludehydrosinotherthantokenrolesinthe

governanceoforganizationsintendedtobenefitourcommunity

furtherstigmatizesourconditionandtreatsusasobjects,not

Anygroupviolatingthisprincipledoesnottrulyserveour

interestsandtheinterestsofgenerationsofhydrostocome.

10/9/2011 4AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

5/17

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

. .

10/9/2011 5AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

6/17

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.

10/9/2011 6AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

7/17

Princi les4. Wewillnotbepittedagainstotherdiseasecommunities,

evenaswepointoutdisparitiesintheresourcesallocatedto

hydrocephalusincomparisontootherdiseases.

n ac ,wew s oemu a e esuccesseso o ercommun es

inhighlightingtheirurgentneedsandinmarshalingresourcesto

theircause. Wewillcollaboratewithalliedcommunities

wheneverpossible. Wedonotwantanyothercommunitys

pieceofanypie:thepiemustbelargeenoughforallofus.

10/9/2011 7AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

8/17

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.

10/9/2011 8AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

9/17

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

10/9/2011 9AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

10/17

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

10/9/2011 10AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

11/17

strictlyforthepurposeofreceivingmoneythatisgrantedtoresearchersinmanydisciplinestoimproveknowledge,treatment,

andqualityoflife Promotesinvestigationofareasnotbeing

fundedbyNIH,DoD,others

Isabletogiveasmallpercentageofreceiptsdirectlytoadvocacyorganization

10/9/2011 11AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

12/17

establishedstrictlytoinformallstakeholders

, ,

hydrocephalus;andtoconnecthydrosand

,

toformsupportiveinterpersonalnetworks.

treatmentorresearch

10/9/2011 12AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

13/17

policymakersatalllevelsonbehalfofthe

Educatesandtrainsmembersofthe

advocates

ece ves un ng romc ar ta e

organizationstotheextentallowedbylaw

10/9/2011 13AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

14/17

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

10/9/2011 14AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

15/17

Definetheorganizationsrequiredtomeet

theneedsofthehydrocommunityEstablishneworganizationsfromwhatthe

communitywouldsalvageofexistinggroups,

withnewcomponentsasneededHydrosmustenvisionanddirectthere

constructionoforganizationsandhold

majoritypositionsintheirnewboards

10/9/2011 15AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

16/17

Reintroducethenewhydrocephalus

movementtothelargerneuroscience,healthcommunities

Engagewithalliedcommunities,e.g.Spina

Bifida,Alzheimers,ParkinsonsIntegratewithlargeradvocacyand

researchmovements,e.g.NationalHealth

Council,OneMindforResearch

10/9/2011 16AHydrocephalusManifesto

8/3/2019 A Hydrocephalus Manifesto

17/17

Validatethisapproachwiththecommunity

Identifyhydrowarriorscapableofworkingtogethertopromoteandrealizetheagenda

Enlistthesupportofexistingandnewallies

Reportprogressregularlybacktothe

community

CommentsarewelcomebyemailorontheHydrocephalus

Manifestoblog:http://hydromanifesto.wordpress.com

10/9/2011 17AHydrocephalusManifesto