AHydrocephalusManifesto A Hydrocephalus Manifesto

Changinghowweorganizetoimprovehydrolives Changing how we organize to improve hydro lives DavidM.Phillips,M.S. October9,2011 O t b 9 2011 hcpsage@gmail.com

Purpose
Thisdocumentisofferedtospurdiscussionamongpeople p gp p livingwithhydrocephalus(hydros)andoursupporters aboutthestructure,use,andcontrolofresourcesintended toimprovethequalityofourlivesandourcare.The to impro e the q alit of o r li es and o r care The observationsandproposalscontainedhereinarebasedon thewritersexperienceswithinthehydrocephalus communityandwithotherdiseasecommunities,including breastcancer,HIV,andotherneurologicdiseases.

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Summary
Hydrosarewoefullyunderservedbyallstakeholdergroups relatedtoourdisease,includingourownranks.Inspiteof theorganizationscreated,themoniesspent,andthe increasingpersonalachievementsofhydrosundeterredby ourdisease,thenatureofandconcernsabouthydrocephalus treatmentandcarehavechangedlittleoverthelastthree t t t d h h d littl th l t th decades. Atthistime,onlyastructuralrevolutioninthehydrocephalus ecology,coupledwiththegreaterengagementofhydrosat l l d ith th t t fh d t alllevelsofaction,canensurethatourneedsareadequately understoodandaddressednowandinthefuture.This documentsuggestsprinciplesandavisiontoguidesuch document suggests principles and a vision to guide such profoundchange. Nooneaskedifwewantedhydrocephalus,butwecan determinehowourneedsarebestmet. determine how our needs are best met
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Principles p
1. Hydrosmustbeconsideredfullpartnersinourcareandin thedirectionofallactivitiessurroundinghydrocephalus education,support,advocacy,andresearch.Wearecapable andtalented,andweappreciatetheengagementofour loved ones and our allies. lovedonesandourallies. Failingtoincludehydrosinotherthantokenrolesinthe governanceoforganizationsintendedtobenefitourcommunity furtherstigmatizesourconditionandtreatsusasobjects,not thestrong,intelligent,andthoughtfulpeoplewhomweare. the strong, intelligent, and thoughtful people whom we are. Anygroupviolatingthisprincipledoesnottrulyserveour interestsandtheinterestsofgenerationsofhydrostocome.
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Principles p
2. Thegoalofa cureisdeceptiveandunattainable.Hydrocephalus hasmanycauses,eachwithitsownpreventativesolution;anda universaltreatmentisimplausible.Improvementsinknowledge i lt t t i i l ibl I t i k l d abouthydrocephalusprevalenceandincidence,diagnosis, treatmentselection,treatmentoutcomes,andthequalityoflife forhydrosarehowwewillmeasuresuccess. f h d h ll Hydrocephalusafflictsussecondarytospinabifida,intraventricular Hydrocephalus afflicts us secondary to spina bifida, intraventricular hemorrhage,tumor,andotherrootcauses.Itdoesnottakeamedical degreetounderstandhowdifferentthosecausesmaybe,how imperfectcurrenttreatmentsare,andthatadvancesforonecondition imperfect current treatments are and that advances for one condition maynotbenefitothers.Thereare,however,advancesinknowledge andmedicalpracticethatwillbenefitallhydros;andwemustusethe rightlanguagewhenadvancingourcause.Anewshuntisnotacure. right language when advancing our cause A new shunt is not a cure
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Principles p
3. Attemptingtobeallthingstoallpeoplemakesforlittledone wellandfewsatisfiedcustomers.Wepromotespecialized organizationsthatperformwithexcellenceandplaywellwith organizations that perform with excellence and play well with othersonourbehalf. Educationandsupport,nurturingresearch,andadvocacyeach requirespecificskillsetsandknowledgetobeconductedand managedwell.Inthereactive,newbornstateofahealth g , movement,suchaswhereHIVwas25yearsago,onemight expectsmallerorganizationstoperformallofthesefunctions. Yet,asmovementsmature,theyrequirelargerorganizationsto , , y q g g dotheonethingwhichtheydowithexpertiseandmaturity.To improvetheeffectivenessofourresourcesandtoachievethe advanceswedesire,thehydrocommunitymustcomeofagein , y y g thisregard.
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Principles p
4. Wewillnotbepittedagainstotherdiseasecommunities, evenaswepointoutdisparitiesintheresourcesallocatedto hydrocephalusincomparisontootherdiseases. Infact,wewishtoemulatethesuccessesofothercommunities I f t i ht l t th f th iti inhighlightingtheirurgentneedsandinmarshalingresourcesto theircause.Wewillcollaboratewithalliedcommunities wheneverpossible.Wedonotwantanyothercommunitys pieceofanypie:thepiemustbelargeenoughforallofus.

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Principles p
5. Transparencyandaccountabilityareneveroptional.Our healthandqualityoflifecannotbehostagetoconflictsof interestandimproperactions. Asstewardsoftreasuredresources,ourorganizationsandtheir A t d ft d i ti d th i officersmustcommittothehighestethicalstandardsin governance,operations,andfundraising.Whenweseek financialsupportfortreatmentadvances,75%offundsshould notbespentonoperatingcosts.Controlofcharitableworks cannotbeconcentratedinafamilyoracircleoffriends.Outside cannot be concentrated in a family or a circle of friends. Outside influencesorpotentialselfdealingcannotdictatethe knowledgeorservicesdeliveredtothecommunity.
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CurrentEnvironment Current Environment

Duplicationofeffortsleadstooverallinefficiency,inconsistent messaging,andlackofasharedvisionandstrategy Hydrosexcludedfromgovernanceathighestlevels y g g Knowledgeisnotwidelyshared,evenwiththosewhomay OrgC benefitthemost Transparencyisillusive orgB Education C Cooperationisrare ti i Support orgA
Education Support advocacy researchsupport advocacy researchsupport

Education Support advocacy researchsupport

orgE
Education support advocacy

orgD

education d support

Education advocacy researchsupport

orgF

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WhereWeNeedToBe Where We Need To Be

Hydrossetprioritiesandleadatalllevels Boardmembersacceptpersonalresponsibilityfor levelsoffundraising levels of fundraising Duplicationisminimal Qualityofactivitiesincreases;messagingis consistent Transparencyandcooperationarebuiltin Eachorgcollaborateswithallieddisease communityorgs it EachorgparticipatesinrelevantBig Pictureorgs,e.g.Natl.HealthCouncil, OneMindforResearch Research Support Org

Education &Support Org

Advocacy Org

Qualityoflifeforhydrosandknowledgeaboutthediseaseare continuallyimproved ti ll i d
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ResearchSupportOrganization Research Support Organization

Independent organization or trust established Independentorganizationortrustestablished strictlyforthepurposeofreceivingmoney thatisgrantedtoresearchersinmany disciplinestoimproveknowledge,treatment, andqualityoflife Promotesinvestigationofareasnotbeing fundedbyNIH,DoD,others Isabletogiveasmallpercentageofreceipts directlytoadvocacyorganization
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Education&SupportOrganization Education & Support Organization

Independent 501(c)(3) charitable organization Independent501(c)(3)charitableorganization establishedstrictlytoinformallstakeholders aboutpreventing,treating,andlivingwith about preventing treating and living with hydrocephalus;andtoconnecthydrosand theirlovedoneswithotherssimilarlyaffected, their loved ones with others similarly affected toformsupportiveinterpersonalnetworks. Does not raise money for itself in the name of Doesnotraisemoneyforitselfinthenameof treatmentorresearch
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AdvocacyOrganization Advocacy Organization

501(c)(4) organization established to lobby 501(c)(4)organizationestablishedtolobby policymakersatalllevelsonbehalfofthe hydrocephaluscommunity hydrocephalus community Educatesandtrainsmembersofthe hydrocephaluscommunitytobeeffective hydrocephalus community to be effective advocates R i Receivesfundingfromcharitable f di f h i bl organizationstotheextentallowedbylaw
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HowWeGetThere How We Get There

Conductahydrocephaluscommunityneeds assessment Therequirementsofhydros,notthe aspirationsofanyothergroups,mustdrive i i f h di ourdirectiongoingforward Solicitinputthroughexistingonline S li i i h h i i li communities Pursuetheengagementofpreviously P h f i l unengagedhydros,families,caregivers, andconcernedindividualsandentities d d i di id l d titi
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HowWeGetThere How We Get There

Definetheorganizationsrequiredtomeet theneedsofthehydrocommunity Establishneworganizationsfromwhatthe communitywouldsalvageofexistinggroups, withnewcomponentsasneeded Hydrosmustenvisionanddirectthere constructionoforganizationsandhold majoritypositionsintheirnewboards

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HowWeGetThere How We Get There

Reintroducethenewhydrocephalus movementtothelargerneuroscience,health communities Engagewithalliedcommunities,e.g.Spina Bifida,Alzheimers,Parkinsons Integratewithlargeradvocacyand researchmovements,e.g.NationalHealth Council,OneMindforResearch

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NextSteps Next Steps

Validatethisapproachwiththecommunity Identifyhydrowarriorscapableofworking togethertopromoteandrealizetheagenda Enlistthesupportofexistingandnewallies Reportprogressregularlybacktothe community
CommentsarewelcomebyemailorontheHydrocephalus Manifestoblog:http://hydromanifesto.wordpress.com

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