A GIVING SMARTER GUIDE · Kathy Giusti Founder and Executive Chairwoman Multiple Myeloma Research Foundation Meredith Haupt Director, Research Partnerships The Michael J. Fox Foundation

A GIVING SMARTER GUIDE

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AUTHORSLEADAUTHORSMaureenJapha,JDErikLontok,PhD

EbonyMosleyDanielleSalka

CONTRIBUTINGAUTHORSLaTeseBriggs,PhDSonyaDumanis,PhDHeatherFields

YooriKim,MSEkeminiRiley,PhDMelissaStevens,MBA

COVER

InpartnershipwiththeAmericanSocietyforMicrobiology(ASM),thePhilanthropyAdvisoryServicecreatedthereportcoverwithsubmissionsbyASMmemberstothe2015and2016AgarArtContests.Allsubmissionsarelivingorganismsplatedonagar—agrowthsurfaceformicroorganisms—andspeaktothecreativityoftheacademicresearchfield.ASMlaunchedAgarArtasapublicoutreachprogramtopromotetheworkoftheirscientificmembers,humanizescientists,andhighlighttheroleofmicrobiologyinourlives.

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ACKNOWLEDGEMENTSANDCONTRIBUTORS

Wegraciouslythankthenonprofit,foundation,andphilanthropicleaderswhokindlysharedtheirtime,experience,andexpertisetohelptocompletethislandscapeanalysisofphilanthropicfundingofscientificacademicresearch.Thecontributors’storiesofchallenges,opportunities,andsuccessesguidedourwritingandwillhopefullyinformtheworkofcurrentandfuturephilanthropistsinthisspace.ThisreportwassupportedbytheApexFoundation’sLGMD2iResearchFund(seeAbout).

GinaAgiostratidou,PhDProgramDirector,T1DTheLeonaM.andHarryB.HelmsleyCharitableTrustElizabethCheung,MPPSeniorProgramOfficer,DomesticProgramsConradN.HiltonFoundationGeneralPeterChiarelli(Ret.)ChiefExecutiveOfficerOneMindLouisJ.DeGennaro,PhDPresidentandChiefExecutiveOfficerTheLeukemia&LymphomaSocietySandyFinucaneSeniorAdvisorEpilepsyFoundationRachelFlaxExecutiveDirectorWeissFamilyFoundationMaryroseFranko,PhDExecutiveDirectorHealthResourcesAllianceSimoneFriedmanHeadofPhilanthropyandImpactInvestingEmanuelJ.FriedmanPhilanthropiesKathyGiustiFounderandExecutiveChairwomanMultipleMyelomaResearchFoundation

MeredithHauptDirector,ResearchPartnershipsTheMichaelJ.FoxFoundationJayEttaHeckerExecutiveDirectorWishesforElliotKathyHudson,PhDDeputyDirectorforScience,Outreach,andPolicyNationalInstitutesofHealthBetsyMyers,PhDProgramDirectorforMedicalResearchDorisDukeCharitableFoundationPlaviJainMittal,PhDPresidentandChiefExecutiveOfficerJainFoundationRebeccaObermanExecutiveDirectorML4FoundationLouiseM.Perkins,PhDChiefScientificOfficerMelanomaResearchAllianceKathyRussellConsultantJoshSommerExecutiveDirectorChordomaFoundation

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TABLEOFCONTENTS

AUTHORS.............................................................................................................................................2

ACKNOWLEDGEMENTSANDCONTRIBUTORS.......................................................................................3

STANDOUTEXAMPLESOFSCIENTIFICPHILANTHROPY..........................................................................5

ABOUT.................................................................................................................................................6

FOREWORD..........................................................................................................................................7

EXECUTIVESUMMARY..........................................................................................................................9

1.WHATAREMYPHILANTHROPICGOALS?........................................................................................11

2.WHATISTHECURRENTSTATEOFTHERESEARCHANDEXISTINGSUPPORTERSOFRESEARCH?.......14NONPROFITSANDFOUNDATIONS...................................................................................................................14GOVERNMENT............................................................................................................................................16SUBSCRIPTION-BASEDRESOURCES.................................................................................................................17

3.GIVENTHESTATEOFRESEARCH,WHATARETHEMECHANISMSTOACHIEVEMYGOALS?..............18GIFTSVERSUSSPONSOREDRESEARCHAWARDS................................................................................................18GRANTMECHANISMS..................................................................................................................................19

4.HOWDOIFINDRESEARCHPROPOSALS?........................................................................................22WRITINGANRFP........................................................................................................................................22ADVERTISINGYOURFUNDINGOPPORTUNITY...................................................................................................24

5.HOWDOIJUDGETHEMERITANDPOTENTIALOFAPOTENTIALPROPOSAL?..................................25ENGAGINGEXPERTSINTHEFIELD...................................................................................................................26WHATTOCONSIDERINARESEARCHPROPOSAL................................................................................................27

6.HOWDOIWRITEARESEARCHGRANTAGREEMENT?.....................................................................29PRINCIPLESFOREFFECTIVECOMMUNICATION..................................................................................................29KEYELEMENTSOFINCLUSIONINAGRANTAGREEMENT.....................................................................................30OTHERPROVISIONSTOCONSIDER..................................................................................................................31

7.HOWDOIMONITORARESEARCHAWARD?...................................................................................34GRANTMONITORINGANDPROGRESSREPORTS................................................................................................34FINALGRANTREPORT..................................................................................................................................36

8.HOWDOIMEASURESUCCESS?......................................................................................................37MEASURINGTHETANGIBLEIMPACTOFARESEARCHPROJECT..............................................................................38MEASURINGTHESCIENTIFICMERITOFARESEARCHPROJECT...............................................................................38MEASURINGTHEIMPACTFORYOURFOUNDATION............................................................................................39

CONCLUSION......................................................................................................................................40

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STANDOUTEXAMPLESOFSCIENTIFICPHILANTHROPY

1. ChordomaFoundation:TargetingaCrucialUnmetScientificNeed Page10

2. ConradN.HiltonFoundation:ExpandingtheFieldofMultipleSclerosisResearch Page13

3. EpilepsyFoundation(EF):De-RiskingtheClinicalPipeline Page14

4. TheKennethRaininFoundation:SupportingInnovative,Proof-of-ConceptResearch Page17

5. DorisDukeCharitableFoundation(DDCF):DevelopingtheClinicalWorkforcethroughMentorship Page18

6. BladderCancerAdvocacyNetwork(BCAN):ConveningLeaderstoDefineStrategicPriorities Page19

7. MelanomaResearchAlliance(MRA):FundingCollaborativeResearch Page21

8. TheJainFoundation:DevelopingtheIn-houseExpertisetoAdvancePhilanthropicScientificResearch Page23

9. WishesforElliot(WFE):LeveragingStrategicPartnerships Page24

10. MichaelJ.FoxFoundation(MJFF):De-RiskingInnovation Page35

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ABOUT

AbouttheMilkenInstitute

TheMilkenInstituteisanonprofit,nonpartisanthinktankdeterminedtoincreaseglobalprosperitybyadvancingcollaborativesolutionsthatwidenaccesstocapital,createjobs,andimprovehealth.Wedothisthroughindependent,data-drivenresearch,action-orientedmeetings,andmeaningfulpolicyinitiatives.

AboutFasterCures

FasterCuresisaDC-basedcenteroftheMilkenInstitutedrivenbyasingulargoal—tosavelivesbyacceleratingandimprovingthemedicalresearchsystem.Inworkingtowardthisgoal,FasterCuresfocusesoncuttingthroughtheroadblocksthatslowmedicalprogressbyspurringcross-sectorcollaboration,cultivatingacultureofinnovation,andengagingpatientsaspartners.FasterCuresworksacrosssectorsanddiseasestoacceleratetheprocessthroughwhichgreatadvancesinscienceandtechnologyaretranslatedintomeaningfulmedicalsolutionsforpatients.Ourprogramsidentifywhatworksandwhatdoesnotworkacrosstheresearchecosystemandsharethatknowledgesothateverysector—andeverypatient—canbenefit.

AbouttheCenterforStrategicPhilanthropy

TheMilkenInstituteCenterforStrategicPhilanthropydesignssmartgivingstrategiestoacceleratephilanthropicgoalsandprogress.Itisfocusedonmaximizingthereturnonphilanthropicinvestmentbyensuringthatinnovationusedtoaddressonesocialissueistranslatedtoanother,bestpracticesandmetricsguidenewandexistinggivingprograms,andresourcesareinvestedtooptimizeoutcomes.

AstheflagshipprogramoftheMilkenInstitute’sCenterforStrategicPhilanthropy,thePhilanthropyAdvisoryService(PAS)counselsphilanthropists,familyoffices,wealthadvisors,andfoundationsseekingtomaketransformativephilanthropicinvestments.Expertadvisoryboards,in-depthduediligence,andanobjectiveframeworkforevaluationshapesouranalysis.PASworksinpartnershipwithFasterCurestoprovidecomprehensive,digestibleinformationthathelpsphilanthropistsevaluateresearcheffortsandfundingopportunitiesinvariousdiseaseareas.

AbouttheApexFoundation’sLGMD2iResearchFund

ThemissionofApexFoundation’sLGMD2iResearchFundistofindacureforLimbGirdleMuscularDystrophy2I(LGMD2I)andtoenhancethepatients’qualityoflife.TheResearchFundaccomplishesitsmissionbybuildingacomprehensiveviewoftheentireLGMD2Iresearchlandscape,advocatingforapplicationofnewtechnologiestothefieldofLGMD2Iresearch,financiallysupportingthemostpromisingresearch,andbringingalevelofcollaborationandmanagementtothescientificprocess.

Ourstrategyreliesonthesixcomplementaryprograms:(1)Supportingmedicalresearch,(2)Buildingsolidrelationshipswithscientists/clinicians,(3)Connectingpatients,scientists,anddrugdevelopers,(4)Facilitatingpatientidentification,(5)Increasingpatientinputintotherapydevelopment,and(6)RaisingawarenessofLGMD2I.Weachieveourstrategybyconcentratingonfourobjectives:ClinicalTrialReadiness,Disease-modifyingandCurativeSolutions,Quality-of-LifeImprovement,andPatientsMolecularDatarelatedtoDiseasePresentation.

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FOREWORD

ApexFoundation,thefamilyfoundationforBruceR.McCaw,hasbeenpleasedtoworkwiththeMilkenInstituteCenterforStrategicPhilanthropyandFasterCuresincreatingthisguide.Wearegratefultoallwhocontributedtheirinsightsandwisdom.Hopefully,itisausefulreadforanyoneconsideringinvestinginresearch.Thegoalofproducingausefulguideforprospectivephilanthropistswasdrivenbyourdesiretosharewhatwe’velearnedfrom20yearsofexperienceinthefield.We’velearnedalotthroughthecourseoffundingvariousacademicandmedicalresearchinitiatives,andthroughtrialanderrorofgrantingmanymillionsofdollarstoresearchprojects.Aguideofthissortwouldhaveserveduswellaswesetourcourse,andinconsideringquestionsthatcameupalongtheway.

Amajorfocusofourcurrentworkisonidentifyingnewapproachestodiagnose,treat,andcurelimbgirdlemusculardystrophyviatranslationalresearch.Atthisstageofresearch,newunderstandingsofdiseasemechanismsgainedinthelaboratoryareconvertedintothedevelopmentofnewmethodsfordiagnosisandtherapy.

Aswethinkaboutinnovationandleverage,wearealwaysseekingwaystobemorestrategicbyfosteringgreatercollaborationandtrustamongresearchersandinstitutions,andacrossdisciplinesandsectorsbyapplyingleadershipandmanagementtothesciencethatcanhelpdriveprogress.Giventhechangingstakeholderlandscapeandlesspredictablefundingclimateofourday,thereisincreasingneedforsmarterphilanthropyinR&D.Webelievethisprimerpavesthewayforfundersandtheresearchcommunitytoaccomplishtheirrespectivegoalsfasterandmoreeffectively.

Basedonourownexperience,ouradviceforfundersandexpectationsforresearchersarethefollowing:

AdviceforFunders

• Beclearaboutwhatyouwanttoaccomplish.Putitinwritinginyourgrantagreement,butbeflexible.Westructurethegranttoenablechangesbasedonemergingdataduringthegrantperiod.

• Tiegrantpaymentstoprojectmilestones.Wehavefoundthishelpstokeeptheresearchfocusedonobjectivesandtomaintainaccountability.

• Askyourselfifyouareusingyourfinancialresourcesinthebestwaytoseeresults.Ifwearenotseeingstrongresults,goodorbad,wearepreparedtohelptroubleshootproblemsorpulltheplug.

• Promotecollaborationandteardownsilosbetweengrantees.Wedothisbyrewardinginstitutionalbehaviorsthatfacilitateteamscienceandreal-timedatasharing.

• Consideryouroptionsforhavinginfluenceoverintellectualpropertydevelopedwithyourgrantfunding.Wehavefoundtherearepositionsthatfoundationscantaketohelppromotethedisseminationofknowledgetobenefitsocietyandadvancementofresearchtowardscommercialization.

• Lookforopportunitiestoleverageyourinvestmentforallstakeholders.Ourfundingalonewillnotdevelopanewtherapy,butotherstakeholders—patientsandfamilies,healthcarepayers,regulators,fundersandpatientadvocacyorganizations,biotech,pharma,medicalresearchers,andthemedia—canuseandbuildonthefindingsfromourinvestment.

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• Considerengaginginadvocacyefforts.We’veseenthatpolicysolutionsatthelocal,state,national,andgloballevelscancomplementourfundingprogramsandhelptoadvanceourmission.

AdviceforResearchers

• Focusonnotjustthe“what”butonthe“how”tointegrateyourfindingsintoimprovingpatientcareandadvancingcures.Webelieveallstakeholdershavearesponsibilitytoensurethatapplicableresearchdoesnotendupontheshelfbutisputtoproductiveuse.

• Knowyouraudiencewhencommunicatingresults.Wefindthatwhenoutcomesarecommunicatedineasy-to-understandlanguage,we,aswellasallotherstakeholders,canbebetterpartners,advocates,andsupporters.

• Treatfundersasfullpartners,notjustpatrons.We’vefoundittremendouslyproductivetoworkcollaborativelywithourgranteesandforthemtosharealldata/results,goodorbad,inrealtime,sothatwecanbehelpfulinovercomingobstaclesormovingpromisingresearchtothenextstep.Weappreciatethetime,attention,andrespectourgranteesshowus.Itmakesuswanttobeevenmorecommittedcollaborators.

• Participateineffortsthatpromoteopenscience.Webelievethatdemocratizingdataandsciencecanyieldgreatermedicalprogressforusall.Wehopeyouwillbepartofthemovementtoo.

Whenphilanthropy,science,business,program,andadvocacygroupspresentaunitedfrontandspeakwithacollectivevoice,wemakethemostprogressonpolicyandprogramchangesthatwillleadtothepreventions,treatments,andcuresforalldiseases.Witheachofyourvoicesandleadership,policychanges,andtheallocationofscarceresources,wecan,together,accomplishwhatsciencetellsusworksandistherightthingtodo.CraigStewartPresident&TrusteeApex/BruceR.McCawFamilyFoundation

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EXECUTIVESUMMARY

Aphilanthropist’sdecisiontoinvestinscientificresearchanddevelopmentmaybedrivenbyanarrayoffactors.Theirgivingmaybemotivatedbypersonalexperiencewithaspecificdisease,thedesiretohelpimprovehealthandsavelives,ortheaspirationtoimprovethestatusquo.Regardlessofone’smotivations,strategicphilanthropicinvestmentsinmedicalresearchrequireacarefulconsiderationofthephilanthropist’sprioritiesandanunderstandingofthecurrentstateofresearchtoamplifytheimpactoftheirgiving.

WithsupportfromtheApexFoundation’sLGMD2iResearchFund,theMilkenInstitutePhilanthropyAdvisoryServiceconductedalandscapeanalysisofcurrentandbestpracticesforfundingscientificresearch,whichwasinformedbyinterviewswithfoundationleaders,philanthropyadvisors,andgovernmentstakeholders.InthisGivingSmarterGuideforFundingScientificResearch,weprovideapathwayfordefiningyourphilanthropicpriorities,aligningthemwiththeunmetneedsofaresearchfieldandtheexistingfundingecosystem,andeffectivelydeployingphilanthropiccapitaltouniversitiesandresearchinstitutions.

Thereportisstructuredtoprovidepointsofentryintothepathwayoffundingscientificresearchprimarilyconductedinanacademicormedicalsetting.Writtenforindividualphilanthropistsandfoundationswhomaybenewtoscientificresearch,thisreportwillwalkyouthroughtheprocesswithaseriesofquestionsandkeytakeaways.

1. Whataremyphilanthropicgoals?

• Understandthestagesofscientificresearch(frombasicsciencetoclinicaltrials)andhowtheyalignwithyourgoals.

• Createawell-definedvision,mission,strategy,andobjectivestoguideyourphilanthropy,andalsoclearlyandconsistentlycommunicateyourintereststothescientificresearchcommunityandrelevantstakeholders.

2. Whatisthecurrentstateoftheresearchandwhoareexistingsupportersofresearch?

• Identifypotentialresearchpartners–fromacademics,nonprofits,andindustry–inthediseaseresearchecosystemtohelpdeterminetheresearchgapsyourphilanthropycanaddress.

3. Giventhestateofresearch,whataretheawardmechanismsIcanusetoachievemygoals?

• Explorewhichmechanismisrightforyou-auniversity-directedgiftorasponsoredresearchaward.

• Tailortheawardtofocusonthespecificresearchgaps,suchasscientificunknowns,segmentsoftheresearchworkforce,orresearchinfrastructuretoenhancethecapabilitiesoftheentireresearchecosystem.

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4. HowdoIfindresearchproposals?

• CraftaRequestforProposals(RFP)tocommunicateyourstrategicprioritiestothewiderresearchcommunityandhighlighttheresearchquestionsandobjectivesyouwishtoaddress.

• WidelydisseminateyourRFPtomaximizethenumberofproposalsaddressingyourspecificresearchquestion.

5. HowdoIjudgethemeritandpotentialofasubmittedproposal?

• Considerboththequalityandmeritofproposals,aswellastheabilityoftheresearchertosuccessfullycompletethework.

• Engagediseaseresearchexpertsaspartofthereviewandselectionprocess.

6. HowdoIwritearesearchgrantagreement?

• Uponidentifyingtheproposalyouwishtofund,craftagrantagreement,whichisthelegaldocumentthatoutlinestheterms,conditions,andgoalsofthegrant.

• Effectivecommunicationwiththegranteeandresearchinstitutioniscriticaltoadvancingyourfoundation’sstatedmissionandstrategy.

7. HowdoImonitoraresearchaward?

• Progressandfinalgrantreportsarekeycheckpointsofthefundingprocess,andshouldcapturetheroadblocksandproposedsolutionsoftheawardedproject.

8. HowdoImeasuresuccess?

• Measuringthesuccessofawardedgrantsinvolvebothtangibleandintangibleimpactmetrics.

o Tangiblemetricsincludefruitfulcollaborationsandfollow-onfunding,aswellasresearchinfrastructuredevelopmentandworkforcedirectlysupportedbytheaward.

o Intangiblemetricsincludedevelopmentofnewandinnovativethinkingforthefield,andwhethertheworkdemonstratesthekindofscientificambassadorshipyourfoundationwishestoproject.

Throughoutthereport,wealsohighlightstandoutexamplesofphilanthropicsupportforscientificresearch,rangingfromafocusonnovelresearchwithoutexistingdatabytheKennethRaininFoundation,workforcedevelopmentbytheDorisDukeCharitableFoundation,tothecollaborativeprojectreviewandmodificationmodelemployedbytheJainFoundation(seepage5forcompletelistofcasestudies).

Scientificresearchisanobleendeavor—onethatmanyadvocateforandprofessionallypursue.However,difficultiesremaininhowtoidentifythebestphilanthropicprocessandopportunitiestosupportresearch.Ourgoalwiththisreportistoidentifycommonapproachesandbestpracticestoaddressthepotentialpitfallsandchallengesthatcomewithsupportingscientificresearchinacademicinstitutions.

However,aswithallthingsinscience,youcannotknowwhatwillorwillnotworkuntilyouperformtheexperiment.

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1.WHATAREMYPHILANTHROPICGOALS?KEYTAKEAWAYS

• Understandthestagesofscientificresearch(frombasicsciencetoclinicaltrials)andhowtheyalignwithyourgoals.

• Createawell-definedvision,mission,strategy,andobjectivestoguideyourphilanthropy,andalsoclearlyandconsistentlycommunicateyourintereststothescientificresearchcommunityandrelevantstakeholders.

Thereareviableandeffectivetreatmentsforonly500fortheapproximately10,000knowndiseases.Thus,therearemanyopportunitiesformedicalphilanthropytoadvanceprogress—fromresearchingcausesofCrohn’sdiseasetodevelopingtreatmentsforAlzheimer’sdisease—withnoone-size-fits-allapproach.Giventhearrayofoptions,itcanbedifficulttodecidewhichavenuestopursue.Theinitialstepistodefineyourfundingpriorities,whichwillrequireanarticulationofyourphilanthropicgoals,followedbyanunderstandingoftheresearchprocess,therisksinvolved,andultimatelyinformedthecurrentstateofthescientificfield.

First,youshouldidentifyyourphilanthropicgoalsandaskwhatistheambitiouschangeyouwanttoseeintheworld?Doyouwanttocurearareneurologicaldisease?Doyouwanttodevelopnoveldiagnostictoolsforbloodcancers?Ordoyouwanttobuildaresearchfieldforanunderserveddisease?Articulatingyourgoalsservesasastrongfoundationtostrategicallydeployyourphilanthropy.

Next,youshouldunderstandtheresearchprocessandidentifytheunmetneedsthatareimpedingprogress.Simplystated,themedicalresearchpipelinehasthreestages:basicresearch,translationalresearch,andclinicalresearch(seeright).Philanthropycansupportresearchthroughoutthepipelinebyadvancingthescienceand/orimprovingthesystem.

• Advancingthesciencecentersonaddressingaspecificresearchquestion,suchasunderstandingthebiologicalunderpinningsofadiseaseortestingtheclinicalefficacyofanewdrug.

• Improvingthesystemmeanscreatingtools,resources,orinfrastructurethathelpscientistsanswerresearchquestions.Examplesincludebuildingpatientregistriesandsamplebiorepositoriesforresearch,ordevelopingtheresearchworkforce.

StagesofScientificResearch

Basicresearchaimstoadvanceknowledge,withoutaspecificallyenvisagedorimmediatelypracticalapplication,andservesasthefoundationoftranslationalandclinicalresearch.Basicresearchprojectsfocusonimprovingthescientifictheoriesthatexplainorinformwhatmaycause,drive,andimpactadisease.

Translationalresearch,oftenreferredtoasbench-to-bedsideresearch,servesasthebridgebetweenbasicandclinicalresearch.Translationalresearchprojectsapplyaniterativeandmultidirectionalprocessto(a)transformbasicresearchdiscoveriesintonewdrugs,devices,andinterventionsand(b)utilizefindingsfromtheclinictoinformnewresearchtorefineorexpandaninnovation.

Clinicalresearchaddressesdiseaseprevention,treatment,diagnosis,andrelieffromdisease-relatedsymptomsinhumansubjects.Clinicalresearchprojectsfocusonthesafetyandeffectivenessofmedications,devices,diagnostics,andtreatmentregimensintendedforhumanuse.

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Regardlessofwhichresearchstageyouchoosetosupport,scientificprogressisoftenuncertainandriddledwithrisk.However,oneofthekeyadvantagesofascientificphilanthropyistheabilitytoassumeahigherriskprofilethanfunderssuchastheNIH.Thus,itisimportanttounderstandyourrisktolerancesandhowtotoleratetheriskotherfundersmaynot.

Anappetiteforhigherriskandhighersocialrewardshoulddrivephilanthropiststoconsidernontraditionalandinnovativeapproaches,whileaimingtofillgapsinthefundingandsciencelandscapethathavebeenavoidedbyindustry,governmentagencies,andothernonprofits.

Finally,alandscapeassessmentoftheresearchfieldwillhelpidentifytheunmetneedsthatcanbeaddressedtoadvancedtowardsyourgoals.Methodsforconductingtheduediligencenecessarytodeterminethecurrentfundingandscientificlandscapewillbeaddressedinthenextsection:“WhatIstheCurrentStateoftheResearchandExistingSupportsofResearch?”

ChordomaFoundation:TargetingaCrucialUnmetScientificNeed

MissionandStrategy:

TheChordomaFoundationisworkingtoacceleratethesearchforacurebyinitiatingandfundinghigh-impactresearch,facilitatinginformationexchangeandcollaborationamongresearchers,andprovidingscientificresourcestostudychordoma,ararecanceroustumorthatcanoccuralongtheboneandsofttissueanywherealongthespine.

Program:

TheCellLinePrize—Celllinesarecriticalforunderstandingchordomaanddevelopingnewtreatments.Until2010,onlyonevalidchordomacelllinehadbeencreated,whichpreventedresearchersfromconfirmingtheirfindingsandmanyresearchersfromundertakingchordomaresearchprojectsaltogether.Thus,theFoundation’sScientificAdvisoryBoardandattendeesofitsresearchworkshopsidentifieddevelopmentofnewchordomacelllinesasoneofthehighestprioritiesforadvancingchordomaresearch.

Inresponsetothisclearmessage,theFoundationsetagoaltodevelop10validatedchordomacelllinesandmakethemeasilyaccessibletotheresearchcommunity.However,howtodevelopthesecelllinesandwhotofundwasnotobvious;manyattemptshadbeenmadebytop-notchlabsinthepasttolittleavail.Neededweredifferentapproaches,moretrialanderror,andperhapssomeluck.Ratherthanfocuslimitedresourcesonasmallnumberoflabs,theFoundationencouragedasmanylabsaspossibletobringtheireffortsanduniqueapproachestobearontheproblembyofferinga$10,000prizeforeachvalidchordomacelllinethatissubmittedtotheChordomaFoundationCellLineRepository.

Todate,theCellLinePrizehasledtoninevalidatedchordomacelllines,allofwhichareavailabletoresearchersinthechordomascientificcommunity.

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Onceyouidentifyyourfundingpriorities,yourfoundationshoulddefineavision,mission,andstrategicplantodelineatelong-termgoalsandtheshort-termobjectivesemployedtoachievethem.Doingsowillhelpyourfoundationmaintainfocusandaninternalsenseofpurpose,whilefacilitatingcommunicationandengagementwithexternalstakeholdersthroughoutthefundingprocess.

• Yourfoundation’svisionistheendgoal—suchasaworldfreeofthedisease,oraworldwherethediseaseiscurable,chronic,and/ormanageable.

• Themissionsupportsthevisionandshouldfocusontheunmetneedsandbarriersthatyourfoundationseekstoaddress.Themissionshouldbebroadenoughtoaccommodateadjustmentsinstrategyovertime,butspecificenoughtoclearlydefineandcommunicateyourworktoexternalstakeholders.

• Strategicprioritiesdefinethetoolsthatyourfoundationwillutilizeandtheanglesfromwhichyourfoundationwillchipawayatthelargerproblem.Inotherwords,yourstrategydefinesthestepsneededtoachieveyourmission.

• Objectivessetspecificgoalsthathelpmaintainfocusandmeasuretheefficacyofyourstrategythroughindividualprojectsorinitiatives.Yourfoundation’svisionandmissionwillnotbeachievedovernight,asscientificresearchprogressisnonlinearandfraughtwithrisk.Strategicprioritiesandobjectivessetashort-term,nimbleagendathatcanrespondtointernalfactorssuchasyourfoundation’scapacityandavailableresourcesorexternalfactorssuchastheactionsofotherfundersandtheevolutionofthecurrentstateofthescience.

FORFURTHERREADING:

GettingStarted:AMedicalResearchandDevelopmentPrimer

HonestBrokersforCures:HowVenturePhilanthropyGroupsareChangingBiomedicalResearch

CrossingOvertheValleyofDeath:TranslationalResearch

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2.WHATISTHECURRENTSTATEOFTHERESEARCHANDEXISTINGSUPPORTERSOFRESEARCH?KEYTAKEAWAY

• Identifypotentialresearchpartners—fromacademics,nonprofits,andindustry—inthediseaseresearchecosystemtohelpdeterminetheresearchgapsyourphilanthropycanaddress.

Theidealnextstepinfocusingyourphilanthropyisbetterunderstandingwhoisplayinginthesamesandbox.Thefollowingsectionenumeratesresourcesthatcanexpandyourviewofthediseaseresearchecosystem,fromnonprofitsandfoundations,governmentresources,andsubscription-basedplatforms.

NONPROFITSANDFOUNDATIONS

CharityNavigatoristhenation’slargestandmostutilizedevaluatorofcharities.Itsanalystsexaminethousandsofnonprofitfinancialdocumentstodevelopanumbers-basedratingsystemtoassessmorethan8,000ofAmerica’sbest-knownandsomelesserknown,butworthy,charities.

FoundationDirectoryOnlineisafee-basedserviceoftheFoundationCenterthatmaintainsadatabaseofallU.S.privatefoundationsandassociatedgrantopportunities.

GeneticAllianceisaleadingnonprofithealthadvocacyorganizationthatincludesanetworkof1,200disease-specificadvocacyorganizations,aswellasthousandsofuniversities,privatecompanies,governmentagencies,andpublicpolicyorganizations.GeneticAlliancemanagestheGeneticAllianceRegistryandBiobankthatprovideavarietyofresourcesandpublicationsaboutregistriesandbiobanksdevelopedspecificallymembersandotherdiseaseadvocacyorganizations.

GuideStaristhelargestsourceofinformationonnonprofitorganizations.Ausercanfindorganizationswhosetitlesincludethenameofyourdiseasespace.Alongwithmissionandcontactinformation,GuideStarprovidesrecentIRSdocuments(990forms)thatdetailorganizationalrevenue,assets,expenses,andgrantmaking.

HealthResearchAlliance(HRA)isamembershiporganizationwithrepresentationfrommorethan70nongovernmentalfundersofhealthresearch.HRAmembersroutinelysharebestpracticesandideasabouthowtofacilitateoperationalprocessesofgrant-making.Itssemiannualmembermeetingsprovidememberswiththeopportunitydiscussthetopicsofinteresttothegrant-makingcommunity.Thelistofmemberorganizationsmightgiveinsightintoothernonprofitfundersinyourdiseasespace.

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NationalHealthCouncil(NHC)bringstogetherdiversestakeholderswithinthehealthcommunitytoworkforhealthcarethatmeetsthepersonalneedsandgoalsofpeoplewithchronicdiseasesanddisabilities.TheNHC'scoremembershipincludesthenation’sleadingpatientadvocacyorganizations,whomaltogetherdeveloppublicpolicypositionswiththegoalofbringingaboutahealthcaresystemcommittedtoputtingpatientsfirst.

NationalOrganizationforRareDiseases(NORD)providesnetworkingandresearchservicesforpatientsandtheirfamilies,rarediseasepatientorganizations,medicalprofessionals,andthoseseekingtodevelopnewdiagnosticsandtreatments.

TheResearchAccelerationandInnovationNetwork(TRAIN)isaFasterCuresprogramthatconvenesdozensofforward-thinkingfoundationstolearnfromeachotherandsharetheirnovelsolutionswiththerestofthemedicalresearchsystem.ThelistofparticipatingTRAINorganizationsmightgiveinsightintoothernonprofitfundersinyourdiseasespace.

ConradN.HiltonFoundation:ExpandingtheFieldofMultipleSclerosisResearch

Mission:

ThemissionoftheConradN.HiltonFoundationistoprovidefundstononprofitorganizationsworkingtoimprovethelivesofdisadvantagedandvulnerablepeoplethroughouttheworld.Withinthisscopeofwork,theFoundationprioritizesscientificsupportforresearchersandclinicianshopingtodiscoverthecauseandacureformultiplesclerosis(MS),impactitspreventionandtreatment,toultimatelyimprovethequalityoflifeofpatientswhosufferfromitsdebilitatingeffects.

Strategy:

TheFoundationtargetsitsscientificfundingportfoliotowardtwoprimaryaims:supportandenhancementofexistingfundingeffortsinthefield,andidentificationofinnovativeresearchthatisnotsupportedbycurrentfundingprograms.ThroughtheMarilynHiltonAwardforInnovationinMSResearch,theFoundationleveragesitsexistingrelationshipwithclinicalcarenetworkstoidentifynewresearchers,withthegoalofdirectingfundingtowardinnovativeandriskyresearchprojectswiththepotentialtocreatesignificantchange.

Throughthiseffort,theFoundationaimstoavoidduplicationofexistingresearch,whilealsoidentifyingnew,excitingprojectsthatmightotherwisegounfunded.

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GOVERNMENT

NIHRePORTER—TheNationalInstitutesofHealth(NIH)istheprimaryagencyoftheU.S.governmentresponsibleforbiomedicalandhealth-relatedresearch,aswellasthelargestpublicfunderofbiomedicalresearchintheworld,withannualinvestmentsofmorethan$32billionayear.NIHRePORTERisatooltoassessexistingresearchawardsusingmultiplefilterssuchasresearchfield,university,projectparameters,andprincipalinvestigators(theprimaryresearcherontheaward).Thetoolcanhelpyouunderstandtheongoingresearcheffortsinthespace,aswellastheresearchleadersandprincipalinvestigatorswhomightserveasidealpointsofcontact.AlthoughNIHRePORTERcanhelptoidentifyleadingresearchandexpertsinthefield,itshouldnotserveastheonlytooltoassesstheresearchlandscape.Inthecontextofaconstrainedgovernmentfundingenvironment,establishedinvestigatorsarefavoredtoreceiveNIHfundingbecauseoftheirtrackrecordsorabilitytogeneraterelevantpre-awarddata.YoungerinvestigatorsmaybringanovelperspectivetoresearchquestionsbutcanbedisadvantagedbytheNIHprocessduetotheirlackofpre-existingdata.

Clinicaltrials.gov—Understandingadisease’sclinicalpipelineisavitalsteptoassessingthescientificlandscapeoftheresearch.Asaregistryandresultsdatabaseofpubliclyandprivatelysupportedclinicalstudiesofhumanparticipantsconductedaroundtheworld,maintainedbytheNationalLibraryofMedicine,Clinicaltrials.govcangreatlyaidthisprocess.Ifyourdiseaseareahaspromisingtherapiesintheclinicalpipelinethatneedadditionalsupport,fundingclinicalstudiesmightbeaworthyinvestmentwithhigh-impactpotential.Understandingthestateoftheclinicalresearchcanalsoinformtranslationalresearchopportunitiesbydelineatingthegapsbetweenthebasicscienceandclinicalapplications.

AlthoughClinicaltrials.govisatoolthatcapturestheexistingeffortsinthespace,itdoesnotfacilitatesupportofspecifictrials,asindustry,suchasbiotechsandpharmaceuticalcompanies,playaconsiderableroleinfundingclinicaltrialsofpotentialdrugsandmedicines.

EpilepsyFoundation(EF):De-RiskingtheClinicalPipeline

MissionandStrategy:

EF’smissionistoleadthefighttoovercomethechallengesoflivingwithepilepsyandtoacceleratetherapiestostopseizures,findcures,andsavelives.Inpursuitofthismission,EFworkstoovercomethebarrierstosuccessfultranslationofpromisingnewresearchinsights.

Program:

ThroughtheEpilepsyTherapyProject,EFanalysestheclinicalpipelineandprovidesfinancialsupportandscientificandbusinessdirectiontopromisingnewtherapiesthathaveprogressedbeyondthebasicsciencediscoverystage.Preferenceisgiventoproposalsthatalreadyhaveacommercialpartnerengagedtoassistwithdevelopmentand/orhavecommittedormatchedfundingfromathird-partysource.

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SUBSCRIPTION-BASEDRESOURCES

UberResearch,DimensionsforFunders—Thisfee-basedplatformprovidesphilanthropistswithacomprehensiveviewofthepastandongoingeffortsinspecificresearchfields.Drawingfromaglobalawarddatabasecovering200fundersandmorethan$900billioninhistoricalawards,userscaninstantlycompareinternalfundingapplicationsandtheirphilanthropicinterestsagainsttheglobalfundinglandscape.

OnlinePartnershiptoAccelerateResearch(OnPAR)—Researchfunderscanutilizethisfee-basedplatformtosupportproposalsthatwerereviewedbutnotfundedbytheNIH.NIHhashistoricallysupportedaround30%ofsubmissions;however,inthisconstrainedresearchfundingenvironment,thatratehasdroppedtolessthan20%ofsubmissions.Thus,manyworthyresearchproposalsgounfunded.OnPARaimstoconnectthesehigh-scoring,unfundedproposalswithpotentialfoundation,philanthropic,andindustryfunders,servingasthematchmakerbetweenfunderandpotentialgrantee.

BioCenturyOnlineIntelligence(BCIQ)—Thisfee-basedserviceprovidesinformationandanalysesofvariouscomponentswithintheclinicaldevelopmentspace.BCIQallowstheusertoanalyzetherapeuticproductpipelines,publicandprivatefinancingactivity,andtherelevantbiotechandindustryplayersintheirdesiredresearchspace.Understandingthedynamicandevolvinglandscapethatshapesclinicaldevelopmentempowersthefundertomakemorestrategicgivingdecisions.

FORFURTHERREADING:

ConsortiumSandbox:BuildingandSharingResources

Consortia-pedia:Aprojecttobetterunderstandthebreadthandscopeofapproachesthatawiderangeofconsortiahaveadoptedtobringtogethernon-traditionalpartnerswithasharedR&Dgoal.

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3.GIVENTHESTATEOFRESEARCH,WHATARETHEMECHANISMSTOACHIEVEMYGOALS?KEYTAKEAWAYS

• Explorewhichmechanismisrightforyou-auniversity-directedgiftorasponsoredresearchaward.

• Tailortheawardtofocusonthespecificresearchgaps,suchasscientificunknowns,segmentsoftheresearchworkforce,orresearchinfrastructuretoenhancethecapabilitiesoftheentireresearchecosystem.

Therearemultiplefactorstoconsiderwhendeterminingthefundingmechanismsthatalignwithyourphilanthropicgoals.ThefollowingsectionisinformedbyasurveyofthecurrentmechanismsandprogramsutilizedbymembersoftheFasterCuresTRAINprogram(seesection2foradescriptionofTRAIN).

GIFTSVERSUSSPONSOREDRESEARCHAWARDS

Aninitialconsiderationishowtoengagewiththeacademicinstitutions,becauseexternallysupporteduniversityresearchisclassifiedaseitheragifttotheuniversityorasponsoredresearchproject.Giftsaredefinedasanyitemofvaluegiventoauniversitybyadonorwhoexpectsnothingofsignificantofvalueinreturn,otherthanrecognitionanddispositionofthegiftasdesired.Sponsoredresearchprojectsinvolveagrant,contract,orcooperativeagreementbetweentheuniversityandthesponsor,alongwithadetailedstatementofworkandacommitmenttoaspecificprojectplan.Bothawardstructuresdifferintheirleveloffinancialaccountabilityandprojectoversight.Thefollowingtableprovidesabriefcomparisonofthetwoawardmechanisms.

Gifts SponsoredResearchAward

Purpose Donorspecifiesanareaofinteresttobeaddressedbythegift

Sponsorspecifieshowthefundsshouldbeused,asoutlinedinthegrantorstatementofwork

Reporting Theuniversityhaslittletonoobligationtoreporttothedonorhowthegiftisused.Requiredreportingislimitedtodetailsofhow,when,andtowhomtofundsweredisbursed

Sponsorrequiresperformanceofspecificdutiessuchasresearchdeliverables,budgetreports,progressreports,andreturnofunusedfunds

Document LetterofDonationorGiftAgreement AwardLetterand/orGrantAgreement

DeadlineandTerms Typically,notimeperiodisassociatedwiththeuseoffunds

Agreementoutlinesaspecifictimeperiodtoconducttheproject

Facilities&AdministrativeCostRates(IndirectCosts)

None Variesbyinstitutionandusuallyapercentageofthetotalawardvalue

University/AcademicInstitutionContact

DevelopmentOfficersandFoundationRelationsOffice

SponsoredProgramsOfficeaswellasResearch/ProgramDirectors

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TheKennethRaininFoundation:SupportingInnovative,Proof-of-ConceptResearch

HealthMission:

TheKennethRaininFoundationsupportscutting-edgeresearchprojectsthatarepotentiallytransformativetodiagnosing,treatingandcuringinflammatoryboweldisease.

Program:

TheInnovatorAwardsprogramprovides$100,000grantsforone-yearresearchprojects,whichbecauseoftheirground-breakingnaturemaynotbesuitableforfundingfrommoretraditionalsources,suchastheNIH.Applicantsarenotrequiredtohavepre-existingdata,andgrantproposalsareweighedagainstthefollowingcriteria:innovation,scientificmerit,strongevidenceofcollaboration,andtheinvestigator’scapabilitytoexecutetheproject.Todate,theFoundationhasawarded36InnovatorAwards,ofwhich27weresuccessfullyvalidatedandreceivedfollow-onfundingthroughtheFoundation’sBreakthroughAwardsmechanism.

GRANTMECHANISMS

Dependingonwhatyouwanttoaccomplishwithyourresearchaward,certaingrantmechanismsmaybemoresuitablethanothers.Forwell-studieddiseases,moreimpactfulawardslieintargetedresearchinitiativesthataddressagapinthefield,suchasdrugdevelopmentorinnovativeapproachestodiseaseresearch.Otherdiseaseareasmaybenefitfromworkforcedevelopment;thus,financialsupportforearly-stageinvestigatorsmaybeabetterfit.Belowareconsiderationsinchoosinggrantmechanismsbasedonyourresearchpriorities.

1) First,yourfoundationshouldfirstconsidertheresearchgapyouwishtoaddress.

GrantMechanism

Purpose RangeofAwardSize(peryear)

RangeofAwardDuration

InnovativeResearchAward

Supportsinnovativeresearchwithminimalexistingdatabutaddressesquestionsbeyondcurrentlyacceptedparadigms

$40,000-$150,000

1-2years

TargetedInitiativeAward

Targetsidentifiedresearchneeds,e.g.,biologicalandgeneticsignalsofdisease(biomarkers),drugdiscoveryanddelivery

$25,000-$600,000

1-3years

BridgeFunding SupportsresearchprojectsthathavebeensubmittedtotheNIHbuthavenotyetreceivedNIHfunding

$25,000-$50,000 1-2years

ResearchToolsAward

Targetsthedevelopmentoftoolstosupportdiseaseresearche.g.animalmodels,imagingtechniques,andtissueculturecelllines

$25,000-$50,000 1-2years

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DorisDukeCharitableFoundation(DDCF):DevelopingtheClinicalWorkforcethroughMentorship

MedicalResearchMission:

ThemissionoftheMedicalResearchProgramistoadvancetheprevention,diagnosis,andtreatmentofhumandiseasebystrengtheningandsupportingclinicalresearch.

StrategyandProgram:

TheClinicalResearchMentorshipprogramprovidespreviouslyfundedDDCFinvestigatorswiththeopportunitytofosterthenextgenerationofcliniciansbymentoringamedicalstudentforoneyear.

Scientificmentoringisapersonal,one-on-onerelationshipbetweenanexperiencedscientistandascientist-in-the-making.TheClinicalResearchMentorshipprogramsupportstheestablishmentofarelationshipbetweenamedicalstudentandatalentedandsuccessfulDDCF-fundedclinicalinvestigatorandrolemodel.Studentswillbecomeinvolvedinaresearchprojectthathasalreadymetthehighstandardsofpeerreview,whileDDCFinvestigatorswillreceivetheopportunitytoteachandtrainthenextgenerationofresearchers.Theirworkwillnotonlyboosttheirmentoringskills,butalsobenefitfromthestudent’senergyandideas.

2) Anotherpotentialconsiderationisthesegment(s)oftheresearchworkforceyouwishtosupport.Withinagivenfundingcycle,yourfoundationcanfundmorethanonetypeofscientist.Thefollowingtabledescribessomecommonpracticesrelatedtoworkforcegrants.

TheconsiderationsdescribedintheMechanismandWorkforcetablesarenotmutuallyexclusiveandcanbemixedandmatchedtoalignwithyourphilanthropicpriorities.

Workforce Definition AwardSize

(peryear)

RangeofAwardDuration

UndergraduateFellowship

Forresearcherscurrentlyenrolledinanaccreditedundergraduateprogram

$2,500-$4,000

<1year

PredoctoralFellowship

Forresearchersenrolledinamaster’sordoctoralprogram

$30,000-$41,000

1-2years

PostdoctoralFellowship

Forresearcherswithagraduatedegree

$35,000-$60,000

1-5years

Early-StageInvestigators

Forprincipalinvestigatorsintheearlystagesoftheircareer

$20,000-$100,000

1-5years

EstablishedInvestigators

Forprincipalinvestigators10yearsormoreposttheirgraduatedegree

$100,000-$150,000

1-5years

TeamScience For>2investigatorsacrossmultipleresearchdisciplines

$100,000-$300,000

1-5years

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3) Anotherpotentialconsiderationforrarediseasesandnewresearchfieldsistosupportgeneralawarenessanddisseminationofresearchfindingsviaconferenceandmeetingattendance.

FORFURTHERREADING:

EntrepreneursforCures:TheCriticalNeedforInnovativeApproachestoDiseaseResearch

ExpandingtheScienceofPatientInput:BuildingSmarterPatientRegistries

AwardType Purpose

OneTimeAwardSize

MeetingorConferenceSupport

Fundsmeetingsorconferencesrelatedtodisease-specificresearch

$5,000-$20,000

TravelAwards Fundsforresearcherstoattendconferencesorfacilitatecollaborations

$1,000-$2,500

BladderCancerAdvocacyNetwork(BCAN):ConveningLeaderstoDefineStrategicPriorities

Mission:

BCANsetstheagendaforbladdercancerbypromotingandfundingcollaborativeandcutting-edgeresearchprogramsandprovidingcriticalpatientsupportandeducationservices.

Strategy:

In2006,BCANstartedtheBladderCancerThinkTank,thefirstscientificconferencesolelyfocusedonbladdercancer.Hostedannually,theeventistheonlyscientificconferencethatconvenesleadingoncologists,urologists,researchers,andpatientstoenhancecollaborationamongthosededicatedtotheprevention,diagnosis,andtreatmentofbladdercancer.

ThemeetinghasfocusedonidentifyingobstaclesandcreatingsolutionsinbladdercancerresearchandhelpstodefineBCAN’sstrategicfundingprioritieswhileadvancingbladdercancerresearch.AkeyoutcomeoftheThinkTankwasthelaunchoftheBladderCancerGenomicsConsortium,whichisacooperativeeffortbetweenBCANandeightmajormedicalcentersrecognizedfortheirexpertiseinbladdercancerresearchandtreatment.

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4.HOWDOIFINDRESEARCHPROPOSALS?KEYTAKEAWAYS

• CraftaRequestforProposals(RFP)tocommunicateyourstrategicprioritiestothewiderresearchcommunityandhighlighttheresearchquestionsandobjectivesyouwishtoaddress.

• WidelydisseminateyourRFPtomaximizethenumberofproposalsaddressingyourspecificresearchquestion.

WRITINGANRFP

Aftersettingyourgoalsandidentifyingthemostappropriategrantmechanisms,thenextstepistosolicitresearchproposals.ThisprocessstartsbywritinganRFP,alsoreferredtoasRequestforApplications(RFA),whichcommunicatesyourstrategicprioritiestothewiderresearchcommunity.Itshouldhighlighttheobjectivesyouwishtoaddressgiventhecurrentstateoftheresearch.RFPscanfollowavarietyofapproachestopredeterminewhichresearchersortypesofprojectswillbefunded,orboth.TheoutlinebelowdelineatesthekeyelementsthatyourfoundationmightincludeinanRFP.

1)StatementofResearchPurpose:AsthemostsignificantsectionoftheRFP,thestatementofpurposeclearlydefinesthegoalsyouseektoadvanceinthecontextofunmetneedsandthelargerresearchlandscape.

Elementsofyourstrategymayinclude:

• Stageofresearch:basic,translational,orclinical.

• Targetedpatientpopulation(suchasgenderoragegroup).

• RiskprofileabovethethresholdfortheNIHorothertraditionalfunders(suchasminimalrequirementofpre-existingdata).

Intendedgoalsmayinclude:

• Innovativeandnewmethodsofresearchanddiscovery.

• Identifiedresearchneeds,suchasbiologicalandgeneticsignalsofdisease(biomarkers),drugdiscoveryanddelivery.

• Bridgefunds,orfundingsupportforNIHsubmittedproposalsthathavenotyetreceivedNIHfunding.

• Increasedawarenessaboutyourdiseasespace(meetingsupportortravelgrants).

ToolsforPhilanthropy:GrantManagementSoftware

Manygrantmanagementplatformscanaidinthedevelopment,receipt,review,andtrackingofawardsthroughouttheirfundinglifecycle.In2016,thenonprofitIdealwarepublishedacomprehensivereviewofcommerciallyavailablegrantmanagementsoftware.The“Consumer’sGuidetoGrantsManagementSystems”categorizesplatformsbasedonfourattributes:lowcostforsimpleneeds,flexiblerelationshipmanagement,comprehensiveonlinedatacollection,andcomprehensiveapplicationreview.

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2)Submissions:Thissectiondescribestheadministrativecomponentsofgrantselectionandimplementationandmayinclude:

• Desiredformat/pagelengthforthegrantproposal.

• Timelineofthereviewprocessandwhenresearchersmightexpectaresponse.

• Expectedtostartandendoffundingforselectedproposals.

• Timelineforreleaseoffundingoverthecourseofthegrant.

• Accessandavailabilityofuniversityresourcestoaccomplishtheproposedwork.

3)Eligibility:Theeligibilitysectiondefinesthetypesofresearchersyourfoundationhopestosupport.Dependingonyourpriorities,youmaylimiteligibilityto,orencourageapplicationsfrom:

• Undergraduateresearchers.

• Trainees.

• Early-stagepostdoctoralresearchers.

• Early-stageorestablishedprincipalinvestigatorsinthebeginningstagesoftheircareer.

• Academicswithindustrypartnerships(fortranslationalprojects).

• Researchteamsacrossmultiplescientificdisciplines(suchascliniciansandbasicresearchers)oracrossmultipleresearchfields.

• Consortia—existingresearcheffortscharacterizedbycross-sectorcollaboration,oftenwithmultiplestakeholders,inthepursuitofaunifiedresearchmission.

4)RangeofGrantAwards:Thissectiondefinesthemonetaryscaleofthegrantbasedonyourdesiredgrantingmechanisms(seesection3).YourRFPcanstatethattheawardsizesandtimelineswillbedeterminedbythestatedjustifiedneedsofthesubmittedproposal.Alternatively,yourRFPcanstateapredetermineddollaramounttiedtoasettimelineofrelease(tranchesoffunding).

MelanomaResearchAlliance(MRA):FundingCollaborativeResearch

Mission:

Toendsufferinganddeathduetomelanomabycollaboratingwithallstakeholderstoacceleratepowerfulresearch,advancecuresforallpatients,andpreventmoremelanomas.

Program:

TheTeamScienceAwardProgramisthecenterpieceofMRA’sresearchfundingportfolioandfulfillsoneofMRA’sprimarygoals—tofosteracollaborativeresearchprocess.Multidisciplinaryteamsconsistofprincipalinvestigatorswithcomplementaryexpertisewhomaybefromthesameinstitution,inter-institutional,and/orinternational.

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Tobetterunderstandtherangeofawardsizesforeachstageofresearch,wesurveyedpubliclyavailableinformationonthewebsitesof57TRAINmembers(seesection2).Thetable(right)providesbroadparametersofawardsizesforeachresearchstageandprovidecontextasyourfoundationsolicitsproposalsanddecidesonfundingamounts.Althoughtherangesarewide,thereisaclearprogressioninawardsizebasedonadvancementthroughtheresearchpipeline.

5)ReviewProcess:Thissectiondescribeshowyourfoundationwillselectproposalsandprocessesforinternalandexternalreviewbyscientificexperts.Italsosuggestscriteriaforuseduringproposalevaluation.Thesectiontitled“HowDoIJudgetheMeritofandPotentialofaSubmittedProposal?”presentsbestpracticestoengageexpertsinthefieldandmetricstoassesstheresearcherandresearchproposal.

ADVERTISINGYOURFUNDINGOPPORTUNITY

Toattractaslargeanapplicantpoolaspossible,yourfoundationshouldbroadlydisseminateitsRFP.Advertisingopportunitiesexistonavarietyofwebportalswithareachfarbeyondyourfoundation’swebsite.Belowareseveraloptionsworthexploring:

FoundationDirectoryOnlineisafee-basedserviceoftheFoundationCenterthatmaintainsadatabaseofallU.S.privatefoundationsandassociatedgrantopportunities.Becausemostmajoruniversitieshavesubscriptionstothisdatabase,FoundationDirectoryOnlineisaneffectivewaytomarketyourgrantopportunitiestoacademicresearchers.

COSPivotisasearchabledatabasethatenablesresearcherstoidentifyfundingopportunitiesfromgovernment,privatefoundation,andinternationalsources.AlthoughPivotisafee-basedserviceforresearchersanduniversities,thereisnochargetosubmitfundingopportunities.Mostmajoruniversitieshavesubscriptionstothisdatabase.

Disease-specificgrantdatabasesarecentralizedresourcesthatadvertisefundingopportunitiesfromgovernment,foundations,andindustrythatpertaintospecificdiseases.Thesedatabasesareusuallycoordinatedandmanagedbynonprofits.Dependingonyourfoundation’sdiseasearea,theremightbeadisease-specificdatabasetoadvertisefundingprograms.Ifnoneexistsforyourdisease,yourfoundationmightconsidercoordinatingone.TheEpilepsyResearchConnectionisanexampleofthistypeofdatabase.

StageofResearch RangeofAwardSize(peryear)

Basic $10,000-$250,000

Translational $40,000-$500,000

Clinical $50,000-$3,000,000

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5.HOWDOIJUDGETHEMERITANDPOTENTIALOFAPOTENTIALPROPOSAL?KEYTAKEAWAYS

• Considerboththequalityandmeritofproposals,aswellastheabilityoftheresearchertosuccessfullycompletethework.

• Engagediseaseresearchexpertsaspartofthereviewandselectionprocess.

Thesectionsbelowaddresshowtoengageexperts,evaluatethequalityofaresearcher,andassessthescientificandstrategicmeritoftheproposal.

TheJainFoundation:DevelopingtheIn-houseExpertisetoAdvancePhilanthropicScientificResearch

Mission:

TheJainFoundation'smissionistocuremusculardystrophiescausedbydysferlinproteindeficiency.

FundingModel:

TheJainFoundationemploysaninteractiveprojectmanagementprocess,drivenbytheFoundation’sin-house,full-timescientificteam.Incontrasttothecommonlyusedexternalscientificadvisoryboard,whichevaluatesstacksofsubmittedproposals,theJainFoundation’sscientificteamidentifiesareasofneed,solicitsproposalsfromexpertsintherelevantfields,evaluateseachproposalwhileworkingwiththeresearchertooptimizetheaimstoimprovetheproposal’schancesofsuccessandalignmentwiththeFoundation’sgoals,andthenworkswiththeresearchertoensurethattheprojectisexecutedeffectivelyandcompletedtoitslogicalconclusion.Akeyinnovationofthefundingmodelisthereviewperiod’s“collaborativeprojectmodification”thatoccursbetweentheFoundation’sscientificteamandresearcherswhohavesubmittedproposals.TheFoundationandresearchersworktogethertorefinetheproposal,obtaintherequiredresearchmaterials,andbuildarelationshipofmutualrespectbetweengrantorandgrantee.Thisrelationshipisinvaluablethroughoutthegrantreview,monitoring,andrenewalprocessandleadstoaheightenedlevelofintellectualengagementbybothpartiesthatmovesresearchforward.AfinalkeyadvantageoftheFoundation’sscientificteamisitsfocusedexpertisetoidentifyandeliminateresearchroadblocksduetolackofresearchmaterialsorexpertise,bymediatingcollaborationsamongresearchers.

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ENGAGINGEXPERTSINTHEFIELD

Manyofthefoundationsinterviewedforthisreportengageanetworkofscientificleadersasexternalreviewers.Thesereviewersassessthemeritofaproposalutilizingafoundation-issuedrubricormetricstoensurethatevaluationsarestandardizedandtailoredtothefoundation’sinterests.

Inadditiontoexternalreviewers,yourfoundationshouldconsiderhiringaninternalscientificadvisorordirector–oftenreferredtoasaChiefScientificOfficer–tooverseeproposalevaluationandgranteeselection,aswellastohelptodefinethescientificandstrategicprioritiesadvancedbyyourfundingprograms.

Ifyourfoundationisinterestedintranslationalresearch,youshouldalsoconsiderengaginganadvisoryboardofreviewerswithbusinessexpertisetoevaluatethecommercialviabilityofaninvestmentopportunity.Thesereviewerscanalsohelptoidentifyopportunitiesforstrategicpartnershipswithindustrytofacilitatethetranslationofresearchfromthebench-to-bedside.

Inaddition,whenselectingreviewers,itisimportanttotakemeasurestomaintainobjectivityandavoidconflictofinterest.Ifyourfoundationisworkinginararediseaselandscapewithlimitedresearchersorinanotherwiseinsulatedcommunity,youmayneedtoexerciseextracautiontodeterconflictofinterestduringthereviewprocess.Thiswouldinvolveseekingoutabroader,interdisciplinarypoolofexpertswhomightbeoneortwostepsremovedfromyourdiseasearea,inadditiontothemainplayersinyourdiseasearea.

Thesurveyedfoundationsengagereviewersonavolunteerbasisorwithanannualhonorariumrangingfrom$1,000-$5,000,dependingontheleveloftheengagement.

WishesforElliot(WFE):LeveragingStrategicPartnerships

Mission:

WFEisafamily-based,nonprofitorganizationdedicatedtosupportingscientificresearchtoimprovethelivesandprognosesofchildrenstrugglingwithSCN8Amutations,anextremelyrareformofepilepsy.

Strategy:

Asasmallfoundationlackingin-housescientificexpertise,WFEpursuedanalternativestrategytodevelopacompetitive,peer-reviewedprocessforidentifyingpromisingresearchopportunities.WFEpartneredwiththeAmericanEpilepsySociety(AES),aleadingnonprofitsupporterofepilepsyresearch,togainaccesstoAES’sexpertiseandpeerreviewinfrastructure.

Underthetermsofthepartnership,AES’speerreviewpanelsevaluatedproposalsforSCN8AresearchalongwithotherproposalsforAESEarlyCareerResearchFundingprogramsandrecommendedtwoproposalsforfunding.WFEfundedoneproposal,andAESfundedtheotherproposal(forwhichWFEprovided15%ofthecosts).

Throughthisstrategicpartnership,WFEwasabletoachieveahighlevelofscientificrigorinitsselectionprocessaswellassuccessfullychanneladditionalfundingtoSCN8Aresearch.

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WHATTOCONSIDERINARESEARCHPROPOSAL

Researchproposalreviewisatwo-stepprocess.First,yourfoundationshouldassessthesubmittedproposalsforscientificmerit.Next,yourfoundationshouldassesstheproposalsthatpassthisfirstthresholdforstrategicmerit,orhowwelltheproposedresearchfitswithstrategicfundingpriorities.

ScientificMerit:Yourscientificreviewboardshouldfirstconductabaselineevaluationoftheproposal’sscientificmerit,perhapsusingthefollowingkeymetrics:

Metric KeyQuestionsandMeasures

BackgroundandSupportforHypothesis

• Doestheproposalclearlydefineahypothesisthatissupportedbythecurrentbodyofliteratureinthefield?

ResearchObjectives

• Isitclearwhatknowledgeoradvancementthisresearchseekstoachieve?

• Doresearchobjectivesaddressunmetneedsandalignwithyourfoundation’smission?

• Howlikelyisitthattheseobjectiveswillbeachieved?

StudyDesignandMethodology

• Doesthestudydesignandmethodologyclearlytiebacktothehypothesis?

• Doesthisdesignincludeappropriatecontrolsandameanstogathermeasurablequantitativeand/orqualitativedata?

DataAnalysisandInterpretation

• Willtheproposedanalysisproceduresyieldobjectiveresultsthathaveclearimplicationsforthehypothesis?

ScheduleandMilestones

• Doestheproposalestablishastrategicplanwithclearmilestonesandmonitoringcheckpoints?

• Istheproposedtimelinefeasibleandinlinewiththegrantparametersandyourfoundation’sgoals?

BudgetandBudgetJustifications

• Isthereaclearlystatedbudgetwithjustificationsthatmakesenseandadheretoyourfoundation’sfundingpolicies?

Collaboration(ifafoundationpriority)

• Doestheproposaltakeacollaborative,team-orientedapproach?

• Willtheproposedcollaborationadvancethescientificresearchfield?

ResourceBuilding(ifafoundationpriority)

• Doesthisresearchaimtodeveloptoolsorresourcesthatwillexpandtheinfrastructureandcapabilitiesofthefield?Arethesetoolscongruentwithourfoundation’soverallmission?

• Willthesetoolscontributetotheaccountability,collaboration,andresearcheffectivenessinthefield(seesection7)?

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StrategicMerit:Yourscientificreviewboardshouldnextevaluatetheproposalsdeemedtobeofscientificmeritforstrategicmerit,i.e.,thepotentialoftheresearchtopositivelyimpactthefieldandadvanceyourfoundation’smission.Belowarequestionstoconsiderwhenassessingstrategicmerit.

AlignmentwithYourFoundation’sStrategicPriorities

• Howwelldoestheproposalfitwithyourfoundation’sfundingprioritiesandmission?

• Howsignificantwouldyourfundingbetotheresearcher,i.e.,willyourgrantbeahighpriorityinthecontextoftheresearcher’stotalportfolio?

• Ifyourfoundationchosenottofundthiswork,wouldthisresearchbefundedbyothersources?

• Doesthisproposalfitwithyourfoundation’srisktoleranceanddesiredtimeframeforresults?

PotentialtoImpacttheField

• Howlikelyisitthattheproposedresearchwillpositivelyimpactandcontributetothefield?

• Willthisproposalaidinthedevelopmentnewresourcesandinfrastructuresforthefield?

• Howwelldoestheproposalcapitalizeonexistingresourcesandinfrastructuresinthefield?

• Doestheresearchseektoformstrategicpartnershipswithindustry,nonprofits,universities,otherresearchers,and/orinternationalresearchinitiatives?

o Ifso,willtheproposedcollaborationadvancethescientificresearchfield?

• Howlikelyisitthattheproposedresearchwillsucceedinattractingadditionalresourcesandothersourcesoffunding?

• Iftheapplicantisaformergranteeofyourfoundation,howwelldidtheyperformduringpreviousengagements?

OtherConsiderations:Theavailabilityofinstitutionalresourcestoexecutetheproposedresearchisanotherconsideration.Weemphasizethatinstitutionalresourcesareasecondaryconsiderationtoscientificandstrategicmerit,asgoodresearchcanbeconductedatresearchinstitutesanduniversitieswithfewerresources.Themainquestionisnothowmuchcapitaltheuniversityhas,butwhethertheresearcherhasaccesstothetoolsandresourcesneededtoconducttheproposedresearch.Accordingly,theproposalshoulddescribenotonlythetoolsnecessarytocompletetheresearchbutalsohowtheresearcherwillgainaccesstothosetools.

FORFURTHERREADING:

MeasuringandImprovingImpact:AToolkitforNonprofitFundersofMedicalResearch

GivingSmarter:BuildingaHigh-ImpactMedicalPhilanthropyPortfolio

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6.HOWDOIWRITEARESEARCHGRANTAGREEMENT?KEYTAKEAWAYS

• Uponidentifyingtheproposalyouwishtofund,craftagrantagreement,whichisthelegaldocumentthatoutlinestheterms,conditions,andgoalsofthegrant.

• Effectivecommunicationwiththegranteeandresearchinstitutioniscriticaltoadvancingyourfoundation’sstatedmissionandstrategy.

Thissectionprovidesanoverviewoftheelementscommontomostgrantagreements,aswellasadditionaltopicsafoundationmaywanttoconsideraddressingthroughthegrantagreement.

PRINCIPLESFOREFFECTIVECOMMUNICATION

Regardlessofthedetailsofyourfundingagreement,yourfoundationshouldadoptstrategiesandpoliciesthatfacilitatepositiveandeffectiveinteractionwithuniversitypartners.

Beforeenteringnegotiations,yourfoundationshouldconfirmitsabilitytoclearlyarticulateitsgoalsandlimitationstotheotherparty.Inaddition,itshouldsetadeadlineforfinalizingdecisions,buildingintimetoaddressunexpectedissuesthatmayariseasnegotiationsprogress.

FrominterviewsforthisreportanddiscussionsamonguniversityandfoundationleadershostedbyFasterCuresinJuly2012andNovember2015,wehaveidentifiedthreekeyprinciplestoguidebothfoundationsanduniversitiesingrantagreementnegotiations.

Principle1:EnterintoPartnershipsforPurpose

• Althoughtheirprioritiesandexpectationsmaydiffer,universitiesandfoundationsaremission-drivenorganizationsworkingtoservethepublicgood.Thenegotiationprocessshouldbemindfulofthecommongoaltodeliversafeandeffectivetherapiestopatientsasefficientlyaspossible.

• Throughexperience,resources,andcontacts,yourfoundationcanaddvaluetotheprocessfarbeyondtheamountoffundingsupplied.Clearlycommunicatethatvaluetouniversitystakeholderswiththeaimofformingasustainablepartnershipratherthanaone-timetransaction.

Principle2:CommunicateEarlyandOften

• Establishingasinglepointofcontactforyourfoundationandtheuniversityfacilitatesinternalcoordinationandavoidsmultiple,potentiallyconflictingconversationsbetweenthefunder,researchers,technologytransferoffice(“TTO”),researchadministration,andotherentities.

• Settingexpectationsforwhenyourfoundationshouldbenotifiedofcertaindevelopments.Forexample,establishingthattheuniversitymustnotifyyourfoundationwithin60daysofreceivinganinventiondisclosureforaninventionfundedatleastinpartbyyourfoundation.

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Principle3:BeasTransparentastheProcessAllows

• Whenlicensingofthefundedtechnologytoathird-partyispossible,yourfoundationshouldasktoreviewtheinstitution’sdiligencetermsandrequirements.

• Ifinterestedinsupportingthesharingofearly-stageresearchorresources,yourfoundationshouldensurethattheuniversity’ssharingpoliciesarereasonablytailoredforthetechnologyandresearchstage.

• Ifseekingashareofanylicensingrevenue,yourfoundationshouldarticulateyourgoalsanddeterminethetermsforafairallocation.Thisallocationcouldtaketheformofaproportionalshare,flatrate,thresholdrequirement,and/oracap.

KEYELEMENTSOFINCLUSIONINAGRANTAGREEMENT

Dependingonthedepthandbreadthofitsresearchportfolio,yourfoundationmayneeddifferentagreementsfordifferentresearchprojects.Trustedlegalcounselshouldreviewthegrantagreementtoensuresatisfactionofthethelegalrequirementsspecifictoyourorganizationandresearchgrant.However,theelementslistedbelowwilllikelybeincludedinanyacademicgrant.

• Amountandpurposeofthegrant:Althoughitmayseemobvious,theagreementshouldincludethisinformationsothatallpartiesareclearabouttheexpectationsbeforetheresearchbegins.

• Coverageofindirectcosts:Theagreementshouldstatewhetherindirectcostswillbecovered,andifsoatwhatrate.Indirectcosts,alsoknownas“facilitiesandadministrationcosts,”areexpensesthatcannotbedirectlyattributedtoaparticularproject(e.g.,labs,classrooms,offices,libraries,officesupplies,departmentaladministrativestaff,utilities,maintenance,andresearchadministrationstaffandoffices).FederalagenciessuchastheNIHmaypayindirectcostratesof50%ormoredependingontheresearchinstitution.Foundationsthatelecttocoverindirectcoststypicallydosoatamuchlowerrate.A2014surveyoforganizationsconductedbyFasterCuresandtheHealthResearchAlliancerevealedamedianindirectcostrateof10%.

• Granttermandpaymentschedule:Theagreementshouldoutlinehowandwhenthegranteewillreceivefunds.Fundingcanbeadministeredininstallmentstiedtothegranteemeetingcertainmilestonesoutlinedintheresearchplan.

• Reportingexpectations:Theagreementshouldspecifywhetherthegranteeshouldsubmitinterimreportsoronlyafinalreport.Inaddition,toensurethatreportsarecomprehensiveyetdigestibleatalaylevel,theagreementshouldprovideguidelinesaboutthetypeofinformationtoreport.Updatesviateleconferencecouldserveasalternativestowrittenreports.Ifareportrevealsthateventsarenotunfoldingasplanned,yourfoundationshouldhelpthegranteetomakecoursecorrectionstoensureeffectiveuseofyourfunding.KeyconsiderationsforgrantreportingwillbecoveredinSection#7,“HowDoIMonitoraResearchAward?”

• Publicationandpublicity:Theagreementshouldoutlinetheexpectationsforpublishingresultsandclarifyhowthegrantitselfwillbepublicized(ifatall).

• Confidentiality:Theagreementshouldclarifyhowboththegrantorandgranteewillhandleandexchangeconfidentialinformation.

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• Budget:Theagreementshouldsetforththebudgetandstatehowchangestothebudgetcanbemadeandaddressedifnecessary.

• Provisionsforterminatingthegrant:Itiscommontoallowforterminationwhere,forexample,thegrantee’stax-exemptstatusischangedorrevoked,orthegranteefailstoabidebythetermsofthegrantagreement.

• Intellectualproperty:Foundationsandgrant-makingorganizationsaretypicallynotstructuredtomanageintellectualproperty.Academicgrantsusuallystatethatownershipofintellectualpropertyresideswiththeuniversity.However,foundationsarebecomingincreasinglyinterestedinplayingaroleinhowtheintellectualpropertymovesforward,orinsharinganyrevenue.Wediscusstheseapproachesinthefollowingsection.

OTHERPROVISIONSTOCONSIDER

Thedecisiontoincludetheprovisionsdiscussedbelowinthegrantagreementwillvaryacrossorganizations,andevenacrossprojectswithinthesameorganization.Forexample,afoundationthatfundsbasicresearchmayplaceahighpriorityondataandresourcesharingandincludeprovisionsdesignedtofacilitatesuchsharing.Incontrast,afoundationthatfundslaterstageortranslationalresearchmayfocusmoreonhelpingtomoveanyintellectualpropertygeneratedtowardcommercialapplication.

ThroughdiscussionswithrepresentativesfrombothuniversitiesandpatientfoundationsatFasterCures,weidentifiedthreeroadblocksfrequentlyencounteredingrantagreements:

• Sharingofresourcesinbasicresearch

• Intellectualpropertyandroleofthefunder

• Revenuesharing

SharingofBasicResearchandResources:Manyfoundationsthatfundscientificresearch,particularlyearly-stageresearch,wanttoensurethatresearchersacrossinstitutionsworkcollaborativelysothatdiscoveriesmoveforwardefficiently.Foundationscanpromotetheircollaborativepolicesthroughtheirgrantagreementsandmayconditionfuturefundingonthedegreeofcooperationandcollaborationdemonstratedbyaninvestigator.Belowarepossibleprovisionsforconsideration.

ParticipationinWorkshopsorCollaboration:Somefoundations,particularlythosefocusedonaspecificdiseasearea,requireitsfundedresearcherstodiscussandshareinformationandtoolswitheachother.Thisconditionisoftenemployedbyfundersinadiseaseareawithrelativelyfewresearchersorwithalargeportfolioofresearchersworkingonasimilartypeofproject.

Publication:Academicresearchersarehighlymotivatedtopublishtheirworkinacademicjournals.However,ittakestimetoprepareanarticleforpublicationinaprestigiousjournal,whichcanbecriticaltocareeradvancement.Moreover,academicresearchersmaynotbeeagertoshareresultsfromfailedexperiments.Manyfundersrecognizethesechallengesandrequirepublicationofallresults,withinareasonableamountoftime,asaconditionoffunding.Fundersmayalsoconsiderprovisionsthatreservetheirrighttopubliclyreleasetheresultsoftheresearchiftheresearcherfailstodosowithinareasonableamountoftime.

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SharingData,Tools,andResources:Accesstoresearchtoolsiswidelyacknowledgedasacriticalcomponenttoscientificadvancement.Atthesametime,reasonablerestrictionsmaybenecessarytopreserveopportunitiesforcommercialdevelopment.Therefore,fundersshouldbecarefultobalancetheneedsofthescientificcommunitywiththerequirementsofproductdevelopmentwhencraftingprovisions.

Research-UseOnlyLicense:Aresearch-useonlylicenseauthorizesthelicenseetouseintellectualpropertyforresearchpurposesonly.Thistypeoflicensefacilitatesresearch,withoutcompromisingownershipoftheunderlyingintellectualproperty.Itmaybeparticularlyusefulwhenresearchisinarelativelyearlystage,suchthatthebenefitsofsharingoutweightherisks.Furthermore,thislicensepreservestherightsoftheuniversitytoofferexclusivecommercialrightstoathird-partycompanythatisinterestedinthetechnology.Theselicensescantakedifferentforms.Earlycommunicationwiththegranteewillensureanapproachthatisacceptabletobothsides.

• OptionA:Grantorrequiresgranteetoextendanonexclusive,sub-licensablelicensebacktothegrantor,whichthegrantormaythendistributesolelyforresearchpurposes.

• OptionB:Granteeagreestoextendanonexclusive,royalty-freelicensetoalimitednumberofinstitutionswhowillhavepermissiontouseintellectualpropertygeneratedwithfoundation-fundedresearchsolelyforresearchpurposes.

IntellectualPropertyandtheroleoftheFunder:Manyfoundationsplacehighimportanceofworkingwithinstitutionsthatareequallydedicatedtomovingpromisingtechnologyforward,includingafterlicensingtoathirdparty(e.g.suchasbiotechorindustrypartners).Theymaybeconcernedaboutthededicationofallindustrypartnerstoadvancetherapeuticdevelopmentwithintheirdiseasespace.Therefore,selectingalicenseewiththecapability,expertise,andmotivationtomoveaproductforwardiscriticalandfoundationsincreasinglywanttoplayaroleintheselectionprocess.

Moreover,foundationswithbroadnetworksandsubjectmatterexpertisemaybeabletocontributetotheidentificationofpotentiallicensees.Indeed,manysurveyeduniversitiesandTTOsindicatedthattheywouldwelcomeinputfromfunders.However,grantprovisionsthatremovefinaldecision-makingauthorityfromtheuniversityorgivethefoundationtherightto“march-in”andtakecontroloftheintellectualpropertyifthelicenseeisnotadvancingthetechnologycanbeproblematic.Specifically,suchprovisionsmayhavetheunintendedconsequenceofdiscouragingpromisinglicenseesorderailingnegotiations.However,foundationscanplayanimportantoversightroleandshouldworkwiththegranteetodevelopacollaborativeandcoordinatedlicensingeffort.

IdentifyInterestinCommercializationProcess:Funderswhodesirearoleinthecommercializationprocessshouldclearlycommunicatethisintentinthegrantagreement.Exampletextisasfollows:

“GivenFoundation’snetworkandexpertise,bothpartiesrecognizethatFoundationcanbeavaluablepartnerinthesearchforalicenseeoftechnologyfundedbythisgrant.Accordingly,thepartiesagreethatwithin30daysofthedecisiontopursuepatentprotection,theFoundationwillbeofferedanopportunitytoconferwiththeInstitutiontoidentifyandsuggestpotentiallicensees.”

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Inaddition,foundationsshouldidentifyacontactpersonwithintheofficeresponsibleforcommercializinginventions,usuallytheuniversity’sTTO.Althoughuniversitiesandfoundationsarealignedintheirgoaltomovetechnologymoveforward,foundationscanexercisesomeoversightbyrequiringtheuniversitytoshareitsdiligencetermsearlyintheprocesssothatitcanidentifypotentialvulnerabilities.Buildingintotheagreementarequirementforregularcommunicationwiththeuniversityaboutlicensingefforts,evenafterthegranttermhasended,willnotonlykeepthefoundationinformedbutalsoenablethefoundationtoidentifyasyetuntappedresourcesorpotentialpartners.

RequireNotificationofInventions:Foundationswhodesirearoleinthecommercializationprocessshouldalsorequirenotificationwhenintellectualpropertyisdevelopedwithfoundationfunds.Toreducetheadministrativeburdenoninstitutions,thesereportingrequirementsshouldbeconsistentwiththoseestablishedbytheNIH.

RevenueSharing:Manyfoundationsareexploringrevenue-sharingprovisionstogeneratemoresustainablefundingstreams.Theseprovisionsareparticularlyappealingforfundersoflaterstageresearchbecausethelikelihoodofgeneratingintellectualpropertywithcommercialpotentialismuchhigher.Differentinstitutionsarelikelytohavedifferentpoliciesregardingrevenuesharing.Manysurveyedinstitutionsindicatedthatrevenuesharingisanappropriateandreasonablestrategy,butitmustbeinlinewiththefoundation’scontributiontotheresearch.Althoughrevenue-sharingprovisionscantakemanyforms,thefollowingaretwocurrentexamples:

• Revenueisdistributedinamountsproportionaltothefunder’scontribution,whichisthefairestallocation.

• Thefunderreceivesaflatroyaltyrate,cappedatareasonablemultipleoftheaward,whichisappealingbecauseofitsstraightforwardapplication.

Thereasonablenessofthenegotiatedratewilldependonotherdeductionsorcontributionsmadebythefoundation,aswellasthespecificresearchbeingfunded.Forexample,becauseuniversitiesdevoteresourcestofilingforpatentsformanyinventions—notjustthosethatgenerateroyalties—afoundationthatofferstocoverpatentingcostsmaybeabletonegotiateahigherroyaltyrate.

Regardlessoftheapproachemployed,foundationsshouldconsiderstatingathresholdthatmustbereachedbeforetheitsrighttosharekicksin.Suchathresholdensuresthatafoundationsharesinanybigwinners,butavoidstheadministrativeburdenofdividingsmallamountsofrevenue.Athresholdalsogivetheuniversityachancetorecoupsomeofitsindirectcoststhatmaynothavebeencoveredbythefoundation.

FORFURTHERREADING:TRAINFoundation-UniversityPartnershipsToolkit

UnlockingIntellectualProperty:PrinciplesforResponsibleNegotiation

University-FoundationRelations:FromTransactionaltoTransformativePartnerships

KeyResearchAgreementTerms&Definitions

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7.HOWDOIMONITORARESEARCHAWARD?KEYTAKEAWAY

• Progressandfinalgrantreportsarekeycheckpointsofthefundingprocess,andshouldcapturetheroadblocksandproposedsolutionsoftheawardedproject.

Likeanyinvestment,choosingwhoandhowtofundisonlythefirststageoftheprocess,withthenextdecisionbeingwhethertocontinuefundingaspecificresearchproject.Scientificresearchisnotlinear,withroadblocksahallmarkoftheprocess.Anaward’sprogressandfinalgrantreportarekeymaterialsthatshouldcapturethesechallengesanddemonstratetheresearcher’sabilitytocontinueresearchadvancement.Thefollowingsectiondiscusseshowtoregularlymonitorresearchprogress,identifypotentialchallenges,andassesswhetheraprojectmeritscontinuedand/orpossiblerenewedfunding.

GRANTMONITORINGANDPROGRESSREPORTS

Dependingonthelengthofagrant,yourfoundationcansolicitprogressreportseverysixmonthsorannually.Thefollowingtemplatecanfacilitatethereviewofresearchprogress.Progressreportsarerequiredforsponsoredresearchawards,butarenotregularlyrequiredforgiftstoauniversity(seeSection#3).

PROJECTAIM:

Accomplishmentssincelastprogressreport

Challengesencountered

Proposedsolutions

Anticipatedmilestonesfornextreportingperiod

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Becauseaproject’ssuccesscannotalwaysbepredictedatitsoutset,weencourageyoutoconsidertheabilityofagranteetoadapttoresearchchallengesandgeneratereasonablesolutionstocontinuetoadvancetheproject’saims.Theflowchartbelowservesasaguidetoquicklyassessaresearchgrant’sprogress.Warningsignsincludethefollowing:

• Continuedlackofprogressinprojectaims.

• Lackoffeasibleproposedsolutionstoencounteredchallenges.

• “Missioncreep”orappearanceofnewaimsnotpreviouslydiscussedand/orwithlimitedvaliditytooriginalprojecthypothesis.

Wasprogressmadeinalignmentwithproject

aims?

Yes

Continuemonitoring/fundinguntilnextprogress

report

No

Wereresearchchallenges

encountered?

Yes

Didtheresearcherproposeasolutionto

overcomethechallenge?

Yes

Moveforwardwithproposedsolutionandcontinue

monitoring/fundinguntilnextprogressreport

No

Discussroadblockswithresearchertodeterminewhethercontinuedfundingofprojectisreasonable

No

Reasesstoseewhytheremayhavebeenlackof

progress,expectresearchertoproposesolution

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FINALGRANTREPORT

Attheconclusionofthefundingperiod,yourfoundationshouldrequestafinalreportthatdescribestheproject’soutcomesandimpact.Youcanstructurethefinalreportintermsoffourmetrics:Accountability,Collaboration,ResearchEffectiveness,andResourceBuilding.Althoughtheprogressreportformatcanserveasanoutline,thefinalreportshouldprovidegreaterdetailaboutthesuccessesandfailuresoftheresearchproject.Thequestionsandmetricsbelowcanassistinrequestingtheprojectinformationmostimportanttoyou.

Accountability:Thedegreetowhichagranteetransparentlydetailsprojectexecutiontothefoundation.

• Dothespecificaimsandactivitiesoutlinedinthefinalreportmatchthoseagreeduponintheoriginalworkplan?

• Wereeachoftheprojectaimsaddressed,andwhatweretherelevantoutcomes?• Whatweretheencounteredchallenges,andhowweretheyovercome?• Wastheprojectcompletedwithintheagreedupontimeline?• Wastheprojectcompletedwithinbudgetguidelines?Ifnot,isthereagoodexplanation?

Collaboration:Thedegreetowhichthegranteeengagesandbuildsrelationshipstoacceleratetheoverallfundingandresearchsupportedbythefoundation.

• Wereacademicorindustrycollaborationsinitiated/facilitatedbytheproject?• Wereanyinterdisciplinarycollaborationsinitiatedduringtheproject?

ResearchEffectiveness:Thedegreetowhichthegrantee’sconductedresearchyieldssufficientdataanddeliverablesinalignmentwiththeirproposal’sstatedobjectivesandaims.

• Hastheprojectraisednewpointedresearchquestionstopursue?• Didtheprojectemploynovelconcepts,approaches,ormethods?• Doprojectresultschallengeexistingparadigms?• Doprojectresultsdevelopnewmethodologiesortechnologies?• Howwereresearchresultsdisseminated?

o Numberofpublishedarticlesinpeer-reviewedjournalsorabstractspresentedatconferences.o Numberofseminarsheldfornon-academicaudiences.

• Didtheprojectresultinotherdeliverablessuchasproductsorpatents?• Hasfollow-onfundingbeenawardedtosupportresearchrelatedtotheawardedproject?

ResourceBuilding:Thedegreetowhichthegrantee’sresearchcontributescriticalresourcesandinfrastructuretothegreaterscientificcommunity.

• Howmanytraineesweresupportedbythisaward(ifapplicable)?• Didtheprojectresultintoolsorinfrastructurethatbenefitstheresearchfield?• Howwereprojectresults(publishedornegativedata)sharedwiththefield?

FORFURTHERREADING:


TRAINFoundation-UniversityPartnershipsToolkit

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MichaelJ.FoxFoundation(MJFF):De-RiskingInnovation

Mission:

MJFFisdedicatedtofindingacureforParkinson'sdisease(PD)throughanaggressivelyfundedresearchagendaandtoensuringthedevelopmentofimprovedtherapiesforthoselivingwithParkinson'stoday.

StrategyandImpact:

MJFFinvestsinhigh-risk,high-rewardresearchtargets,withthegoalofde-riskingtheParkinson’sfieldandmakingitasattractiveaspossibleforallresearchers,particularlyindustrygroupsthatplayasignificantpartincommercializingtherapies.

In2005,MJFFbegansupportingnovelresearchatVanderbiltUniversitytodevelopanentirelynewclassoftreatmentforPD,focusedontheglutamatesystemasameanstobypassdopaminereplacementaltogether,withafocusontheglutamatereceptorcalledmGluR4.

In2012,ontheheelsofnearly$5millioninMJFFinvestment,VanderbiltUniversityannouncedamajorcollaborationwithBristol-MyersSquibbfordevelopmentofapotentialfirst-in-classsymptomatictreatmentforPD.Typically,thetimelinefortranslatingaresearchdiscoveryintoanewtreatmentforadisordersuchasPDcantakeasmanyas20years.WithMJFF’ssupport,thefundedresearchgroupwasabletoradicallyacceleratethisprocess.

8.HOWDOIMEASURESUCCESS?KEYTAKEAWAYS

• Measuringthesuccessofawardedgrantsinvolvebothtangibleandintangibleimpactmetrics.

o Tangiblemetricsincludefruitfulcollaborationsandfollow-onfunding,aswellasresearchinfrastructuredevelopmentandworkforcedirectlysupportedbytheaward.

o Intangiblemetricsincludedevelopmentofnewandinnovativethinkingforthefield,andwhethertheworkdemonstratesthekindofscientificambassadorshipyourfoundationwishestoproject.

Thelackoflinearityinscientificresearchmaymakemappingsuccessdifficult,butdoesexpandthewaystomeasuretheimpactofacompletedresearchaward.Althoughitisstraightforwardtoaskwhetherthespecificmilestonesofaprojectweremet,theabilitytogaugethelong-termimpactandbenefitsforthefieldisoftenlimitedattheendofafundingperiod.

Thefirstgoalofthissectionistomakesenseofalltheinformationcollectedfromtheprogressandfinalreports.Thesecondgoalistoprovideaframeworkofquestionstohelpyoutoevaluatewhethertorenewaresearchaward.Weapproachthisevaluationbyconsideringtheimpactofthestakeholdersinvolvedinasignedsponsoredresearchagreement.

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MEASURINGTHETANGIBLEIMPACTOFARESEARCHPROJECT

Thebasiccurrencyoftheacademicresearchfieldliesinscientificpublicationsandpresentations.Researcherswhosuccessfullycommunicatetheirresearchfindingsthroughpeer-reviewedmanuscriptsandscientificconferencesandseminarsaregeneratingimpact.However,impactcanalsobemeasuredintermsofcollaborationswithacademicandindustrypartners,follow-onfunding,andworkforcedevelopment.

• Collaborations:Impactfulcollaborationsincludeengagementwithresearcherswithinthegrantee’suniversityandpartnersinotherinstitutions.Forlate-stagebasic,translational,andclinicalprojects,engagementofindustrycollaboratorsexemplifiesaresearcherapplyingtheirworkbeyondthebench.

• Follow-onFunding:Follow-onfundingisanindirectmeasureofthevalueoftheworktothefieldandadirectmeasureoftheresearcher’sabilitytocapitalizeandadvancetheworkinanenvironmentoflimitedresearchfunding.Thefollow-onfundingagencyisalsoanimportantconsideration,asitrepresentsnewfinancialcollaboratorsthatcanspanfederal,industry,andothernonprofit/foundationfunders.

• WorkforceDevelopment:Recruitmentofnewresearchersintoafieldisacriticalfactorforcontinuedandbetterresearch.Withthefocusonresearchadvancesandnewmedicalproducts,theimportanceofeducatingthenextgenerationofscientiststobecomethenewexpertsandleadersintheirfieldisoftenoverlooked.Thus,youmightassesstheresearcher’sabilitytonotonlyeducateundergraduate,predoctoral,andpostdoctoraltrainees,butalsosupporttheirtransitiontoandsuccessinthenextstageoftheirscientificcareers.

MEASURINGTHESCIENTIFICMERITOFARESEARCHPROJECT

Thefinalresearchreportshoulddiscussthescientificmeritofthecompletedworkandshouldprovideasenseofitsvaluetotheentirefield.Measurementsofthework’simpactincludeitsexpansionofscientificknowledge,innovativeandappliedpotential,andoverallbenefittotheresearchfield.Answeringaresearchquestionoftenbegetsonlymorequestions,andbeforerenewingfunding,youshouldconsidertherelevanceanddirectimpactofnext-stagequestionstoyourdiseaseareaandyourfoundation’smissionandobjectives.

• Didtheprojectresultinanewandinnovativewaytoapproachresearchinyourdiseasearea?

o Doprojectresultsdirectresearcherstoanewwayofthinkingorproposenovelapproachestosolvedisease-relatedproblems?

o Doprojectresultspointtoanoveldiagnostictool,orpossiblyanewtherapytobenefitpersonsaffectedbydisease?

• Didtheprojectleadtonewtoolsorinfrastructurethatwillbenefittheentireresearchfield?Suchtoolsorinfrastructuremightincludenewanimalmodels,experimentalassaysanddesigns,andresearchdatabasesthatfacilitatethesharingofdataandinitiationofcollaborations.

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MEASURINGTHEIMPACTFORYOURFOUNDATION

Becausethelandscapeofscientificresearchisdiverse,itisdifficulttoassembleabroadlyapplicablesetofmetricstoassessthesuccessofanaward.Therefore,theassessmentmustattempttoanswerthefollowingquestions:

• Dotheprojectresultssupportandadvanceyourfoundation’smission?

• Doesthegrantee’sworkdemonstratethekindofscientificambassadorshipyourfoundationseekstoproject?

• Mightthenewresearchquestionsraisedbythegrantimpactandguideyourfoundation’sstrategicobjectives?

FORFURTHERREADING:


GivingSmarter:BuildingaHigh-ImpactMedicalPhilanthropyPortfolio

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CONCLUSION

Philanthropyaccountsforonly3%oftheoverallfundingforscientificresearch,butitcanhaveanoutsizedimpactbytargetingknowledgegapsandbuildingneededresearchinfrastructure.Inaddition,althoughmeasuringthesuccessoffundingscientificresearchhasbeendescribedas“youwillknowitwhenyouseeit,”ourinterviewswithnonprofitfundersofresearchrevealedseveralcontributorstoasuccessfulventureintoscientificphilanthropy:

• Theneedtomaintainalaser-likefocusonthefoundation’sgoals.

• Theimportanceofassessingthegapsinresearchwiththehelpofsubjectmatterexperts.

• Thewillingnesstoemploymultiplefundingapproachestoachieveafoundation’sstrategyandobjectives.

• Thevalueofidentifyingandfacilitatingmultidisciplinaryacademicandindustryresearchpartnerships.

• Thebenefitofmaintainingopencommunicationandtransparencybetweenthegrantor,grantee,andacademicinstitution.

Scientificresearchisanobleendeavor—onethatmanyadvocateforandprofessionallypursue.However,difficultiesremaininhowtoidentifythebestphilanthropicprocessandopportunitiestosupportresearch.Ourgoalwiththisreportistoidentifycommonapproachesandbestpracticestoaddressthepotentialpitfallsandchallengesthatcomewithsupportingscientificresearchinacademicinstitutions.

However,aswithallthingsinscience,youcannotknowwhatwillorwillnotwork,untilyouperformtheexperiment.

A GIVING SMARTER GUIDE · Kathy Giusti Founder and Executive Chairwoman Multiple Myeloma Research Foundation Meredith Haupt Director, Research Partnerships The Michael J. Fox Foundation

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