Welcome.ImBonnieFeldmanaec2onatelyknownasDrBonnie360andIdelightedtobebacktoStanfordMedicineX-asweworktogetherbridgetheautoimmuneabysstomaketheLonelyVoicesofAutoimmunediseaselesslonely.

Whointhisroomhasanautoimmunediseaseorknowssomeonewithanautoimmunedisease?

Aretheyintheir20s,30sor40s?Thereisasurprisingincreaseinmul2pleautoimmunediseasesforyoungadults.

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WhorecognizestheGartnerHypecycle?(Itisusuallyawaytodescribetechadop;on)Surprisingly,sincelastyearIfoundmyselfrecapitula2ngtheHypeCycleinmypersonaljourneyasIbecamepar2cularlyinterestedinapplyingdigitalhealthtoolstoautoimmunediseases.

Baseduponmyresearchinterviewingmorethan200companiesandaTendingmorethan50digitalhealthmee2ngsIcreatedthisAutoimmunityHypeCyclewhichshowsthemicrobiomecomingupthehypecyclewhilemonoclonalan2bodieshavenallyreachedtheplateauofproduc2vity.Ifyouwouldliketoexplorethismore,seemeaXerthetalk,orcometomyworkshoptodayat1:20pm.[seelinkforworkshophTp://bit.ly/1JyIvKd].

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WhydidItakethisplunge?Iheardthelonelyvoicesofautoimmunepa2ents,alsoknownasspoonies,callingtomeacrossanabyssoffrustra2on-whenIfoundmyselfinafamilyconstella2onofautoimmunediseases,includingpeoplemarryingintomyfamily!Theirsymptomswereharrowing,theiraTemptstonddiagnosisandtreatmentdisappoin2ng,andmyhopestopreventdiseaseinmygrandchildrenwerestymied.Autoimmuneisunderservedandunrecognizeddespitethefactthattheyaect16%oftheUSpopula2on,morethancancerandheartdiseasecombined!Yet,autoimmunediseases(includingT1diabetes)receiveonly$1BinNIHfundingperyear,unlikecancers,whichget72mesasmuchfunding.Canyoubelieve,ittakesonaveragemorethan3.5yearsand5doctorstogetadiagnosis?Oncediagnosed,theavailabledrugtreatmentsareusuallyappliedthroughalengthyandfrustra2ngprocessoftrialanderror.Wecanandmustdobe.er.

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Listeningtothepeoplesstories,ledmetolookthereforanswerstotheselonelyvoices.(Thosewhoknowme,canaTestthatInevertakenoforananswer)

SoIdreamedofbecomingadisruptorinautoimmunedisease.Every;meIinterviewedanewcompany,Iwonderedhowwecouldapplytheirideastohelptheautoimmunecommunity.

And,IwasinspiredbythegroundbreakingworkofKathyGius2oftheMul2pleMyelomaResearchFounda2on.Shewasabletobringnewplayerstogetherthatspurredmul2disciplinarycollabora2oninnewanddierentways.

Lookattheremarkableresultsinjust10years-TheMMRFhelpedbring7cancerdrugstomarketandincreasedthelifeexpectancyofMMpa2entsfrom2.5to8years.

Weneedtobringthesecollabora1onstoautoimmunedisease.

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Icon2nuedtodream.LastyearatMedXinGepngtoYes,Atthat2me,weenvisionedahightechandhightouchteamforunderservedautoimmunepa2ents.

Wesawafood-as-medicineteam,amusculoskeletalintegrityteamandawell-beingteam,allworkingincollabora2on.Thegoodnewsis,sincethat2meIseecomplementarymedicinegainingtrac2onintheautoimmunitycommunity.ImagineifwecouldgoonestepfurtherandtheseteamscouldcollaboratewithourWestern-trainedphysicians!THATSwhatIwanttomakehappeninautoimmunedisease.

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Tomovefromdisillusionmenttoenlightenmentweneedtoworktogethertoadvancefromndingproblemstotakingac;on.The3meisright.Myresearch,whichyoucanndonslideshare,uncoveredthreetrendscomingtogethertoignitechange:

TherstisPa2entpower:thevoiceofthepa2ent,individuallyandcollec2velyisbecomingstrongerinresearch,developmentandclinicalprac2ce.Thesecondiscollabora2onanddatasharingtobuildconnec2onsacrossexis2ngspecial2esanddisciplines.Icallitsilobus2ng.

Thethird,Newinsights,istheconvergenceofresearchingenomics,immunology,microbiomics,etc.withinputfrommovementslikequan2edselfandci2zensciencetoturndataintoknowledge.

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LetmetellyouastoryaboutawomanwhowellcallJudy.Judyisinher20s,sueringwithpainfulbutvariableGIsymptomsandpelvic/hippain.

Shegoesrsttohergeneralprac33oner,whooersstandardtreatmentstoquellhersymptomsandprobablydoesntevenconsiderautoimmunediseasesinherdieren2al.Herefershertorsttoanob/gyn,thentoanorthopedistandmaybetophysicaltherapyforherhippain,butdoesnotsuggestdietaryormind/bodyinterven2ons.Monthsgoby,hersymptomswaxandwaneandshebegsherdoctortodosomethingmore.Soherefershertoagastroenterologist,whoordersbloodtestsandacolonoscopy.Basedonbloodbiomarkersandvisibleintes2nalinamma2on,herGIdoctellshershehasIBD.Nowwhat?Anddoesthatdiagnosisexplainherhippain?Judyisinthetroughofdisillusionmentfeelingfrustratedandalone.

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CannewdiscoveriesinimmunologyandthemicrobiomemoveJudyFromtheTroughofDisillusionmenttotheSlopeofEnlightenmentandthrowalifelinetoherandothersintheautoimmunecommunity?Aswediscussedlastyear,wearenowndingthattheGItractisamajororganofimmunityaec2ngbothhealthanddisease.Throughthegut-brainconnec2onourGIseveninuenceourmentalhealth!Thereseemstobecrosstalkbetweenourinternalmicrobialcommuni2esandourhostimmuneresponse.Newresearchsuggestslinksbetweenthemicrobiomeandautoimmunediseases,notjustGIones,butalsoLupusandRA.

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ForJudy,woulddiagnosinghergutproblemsearlierhaveshortened2metotreatmentandpreventedprogression?Judydoesntreallyunderstandhertreatmentop2ons:oralcor2costeroidswithuglyside-eects,scary-soundingan2-inammatoriesormysteriousmonoclonalan2bodiesthatneedtobeinjected.ItshardtobelievethatevenforIBDandCrohns,thestandardofcaredoesnotyetincludedietaryinterven2ons.

SononeofJudysdocsevensuggestexperimenta2onwithdiet,exerciseorstresscontrol.But,manyautoimmunepa2entsandanincreasingnumberofdoctorsnowbelievedietiscrucial,notjustforGIautoimmunediseases,wheretheconnec2onseemsobvious,butalsoforHashimotos,RA,MS,Lupusandothers.Withlimited2mespentwithherMDs,shefeelslostandaloneduringthelongintervalsbetweenappointments.

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SoJudy,baedandconfused,turnstoonlinepa2entcommuni2esforinforma2onandsupport.Incommuni2essuchasmyHealthteams,Chronology,autoimmunemom,PaleomomandFurtherfood.andothersJudycanndfolksexperimen2ngwithdiet.

Inothercommuni2es,likeSmartPa2ents,shendsinforma2onondrugandclinicaltrialop2ons.AndshendsuBiomeoeringtohelphertesthermicrobiome.Fromotherpa2ents,shehearsaboutYehudaSchoenfeldsautoimmunitycenter,wherepa2entsareseenbyautoimmunologistsandwonderswhyshecantndanautoimmunitycenterintheUS.

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Butwhataboutherhippain?Hermusculo-skeletalproblemspersist.Shefeelsincreasinglydiscouragedas--shegetsreferredtoatrigger-pointPT,asoX-2ssuePT,anorthopedist,apodiatrist,ayogatherapist,awalkingtherapist,allwithoutmuchoverallimprovement.S2llfrustrated,shehearsabouttheworkofLarrySmarrandtheQSCollec2veandthinksthattrackingherowndatamayhelp.Soshebeginstotrackwhatsheeatsandhowshefeels,notjustGIsymptoms,butmusculo-skeletalones,too.

JudyisintriguedbymyNutri2onHealth,anappthatallowshertotracksymptomsagainstfoodtoexperimentwithanelimina2ondiet.

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Wonderfully,Judydiscoversthatsomesimpledietarychangeselimina2onofnightshades:tomatoes,peppers,eggplantreduceshermuscular-skeletalpain.Inspired,Judywantstogofurtherexploringhermind/bodyconnec2on.ShendsJiyo,apersonalwell-beingcompanionviaacomprehensivedigitalplayorm.Thisplayormgivesyouwaystoengageandlearnfromothershowtobefeelwell.Basedon20yearsofworkofLeeHoodandtheIns2tuteofSystemsBiology,ArivalegivesJudyachancetounderstandhergenome,microbiomeandlifestyle.Bygatheringdatafromblood,salivaandthemicrobiome,shereceivespersonalizedroadmapalongwithcoachestoguideherwhattodotomaintainherhealth.Butwait,atthesame2meJudyreadsabouttheUCLAdatabreachandbeginstowonderaboutherowndata,whoownsitandwhathappenstoit.

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Sogoingbacktobasics,Judythinksthatmaybeasystems-orientedapproachthatlooksattheunderlyingcauseofdiseasemayhelp.Unfortunately,YehudaSchoenfeldsautoimmunitycenterisbasedinTelAviv.PerhapsshecouldndaUS-basedprac2cefromtheIns2tuteforFunc2onalMedicine.OnautoimmunesummitshendstalksbyDrs.MarkHayman,SusanBlumandTerryWahls,whoallhaveautoimmunediseasesthattheycontrolledwiththeirowndietandlifestylechanges.ButshedoesnotknowwheretondFinally,shendstheOpenMedicineIns2tute,whereshendsour3themes-pa2entpower,newformsofcollabora2onandsharingaswellasnewdatainsights-putintoac2on.Builtfromthegroundupwiththepa2entatthecenter,pa2entsowntheirdatasupportedbyanopen-dataplayormcalledOpenMedNet.ThebackendoftheOpenMedicineIns2tuteisanopen-source,mobile-enabledintegra2onplayormthatallowsdatasharingfrommanyfeeds:smartphones,emails,texts,fax,Webandsoon.

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Thiscollabora2veapproachconnectsallthoseinvolvedinJudyscare-physicians,casemanagers,imagingservices,andclinicallabs.(collabora2onanddatasharing)Attheclinic,doctorsperformadvancedlabtes2ngincludinggenomicsandmicrobiomics.Importantly,thisdataiscollectedover2me,allowingJudytotrackherprogress,supportedbynutri2onistsandotherspecialists.

Furthermore,whileattheclinic,Judyndsoutaboutclinicaltrialsandhowshecandonateherdatatoresearch.(helpingtoturndataintoinsights)

ThegoodnewsisthatJudyhasleXthetroughofdisillusionment.Sheisnowenteringtheslopeofenlightenment,throughpa2entpower,newformsofcollabora2onanddatasharing.Judyisnolongerfeelingisolatedandalone.Judyfeelsempoweredandcomforted.

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WhatelsecouldhelpJudyandpa2entslikeher?Howcanwecreatenewcenterswhereshefeelssupported,encouragedandempowered?Whatifwecouldtakethebestoffunc2onalmedicine,lookingattherootcauseofdiseaseandcombineitwiththeopendatasharingandanaly2ccapabili2esoftheOMI

AndgiveJudyandherteamanexpandedtoolkitwhichusesthebestofconven2onalandcomplementaryapproachesshownhere.Thisapproachwouldbeinanopenandsharingsystemthatfostersthegrowthofaglobalknowledgesharingcommunityforautoimmunepa2ents.Wewelcomeallofyourhelpasweworktogethertomakethelonelyvoicesofautoimmunediseaselesslonely.Link:hTp://bit.ly/20xRCXOHelpushelpyouandothersadvancefromndingproblemstotakingac2on.Joinusintheworkshopat1:20today.

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