4th annual - sickle cell consortium...leadership summit & general assembly of patients,...

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D O U B L E T R E E B U C K H E A D3 3 4 2 P E A C H T R E E R D. N E ,AT L A N TA , G A 3 0 3 2 6

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U n i t y - C o m m i t m e n t - P r o g r e s s

4 T H A N N U A LS I C K L E C E L L C O M M U N I T Y C O N S O R T I U M

LEADERSH IP SUMMIT & GENERAL ASSEMBLY OF CBOS

SC3SICKEL CELL COMMUNITY CONSORTIUM

UnityCommimentProgressSickle Cel l Community Consort ium

2 | SICKLE CELL CONSORTIUM LEADERSHIP SUMMIT AND GENERAL ASSEMBLY| #SC3SUMMIT2019

CO N T E N T S

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1. About SC3

2. Sponsors & Supports

3. At-A-Glance

4. Partner Services

5. CreativeContent

6. SC3Board&Staff

7. Agenda

8. A Closer Look

9. Speakers

10. Partners&Organizations

Dr. Lakiea Bailey

Dr. Lakiea Bailey is a sickle cell disease advocate, educator and research scientist.Diagnosedwithsicklecelldiseaseatagethree,shehasbecomeapassionateadvocateforthoselivingwithrarediseasesandiscommittedto servingas avoiceofencouragementandempowermentwithin thesickle cell community.

Despite the devastating symptoms of sickle cell, Dr. Bailey wasdeterminedtocompletehereducationalgoals,earningaBachelordegreein Biochemistry and Molecular Biology in 2001 and a Doctorate degree in MolecularHematologyandRegenerativeMedicinein2012.Duringthecourseofhereducation,Dr.BaileywasnamedaSouthernRegionalEducationBoard(SREB)DoctoralScholar,wastherecipientofmultiplehonors and awards, including the Fisher Scientific Award for OverallExcellence in Biomedical Research, the Medical College of Georgia AlumniAssociationAward,theGeorgiaReagentsUniversityLeadershipAward andwas inducted in theAlphaUpsilon Phi honor society. Shebelievesthatthroughhardwork,diligence,patienceandfaith,eventheseemingly most impossible obstacles can be overcome.

Dr. Bailey recognizes that her success is due to the strength and commitment of many amazing advocates and supporters in her life and is determined to provide the same support and encouragement to others inthesicklecellcommunity.Sheisthereforecommittedtoservingasaresourceforthesicklecellpatientpopulationasanadvocate,educator,mentor andpublic speaker.Dr.Bailey is theExecutiveDirectorof theSickleCellCommunityConsortium,acoordinatednetworkofsicklecelldiseasecommunity-basedorganizationsthroughouttheUnitedStates,acontractconsultantwithbluebirdbio,hasservedasapatientengagementconsultantwithPfizerPharmaceuticalsandsitsontheResearchAdvisoryBoardfortheFoundationforSickleCellDiseaseResearch.Dr.Baileyenjoys travelingacross thenationpromotingsicklecellawarenessandeducationand isavailable forsicklecellandhealth-relatedcommunityevents,conferencesandseminars.Hergoal is tocontinueto influencesickle cell disease-related biomedical research as well as social andmedicalpolicyandtotravelaroundthecountry,andtheworld,advocatingforthoselivingwiththisdisease.

TheSickleCellCommunityConsortiumwasfoundedinFebruary2014byacoregroupofpatientsandcaregiverswhileattendingtheFDAPatient-FocusedDrugDevelopmentmeeting.ForseveralyearsmanyinthecommunityexpressedaneedtocreateaunifiedplatformtosupportthemanyCBOs(bothlargeandsmall)throughoutthecountryastheyworktoensurethatthevoiceofthesicklecellpatientandcaregiverwascentral inallareasofresearch, legislation,advocacy,educationandpolicy.RealizingthatseveralofthekeyplayersinthisdiscussionwouldbeinMarylandfortheFDAmeeting,Dr.LakieaBaileyconvenedthefirstmeetingtolaythefoundationforwhatwouldbecometheSickleCellCommunityConsortium.Overthecourseoftheyearthatfollowed,she,alongwithVelvetBrown-Watts,KenaDrew,DouglasDeveaux,LavedaWallace-Page,NikkiPetersonandahostofotherpatientandcaregiveradvocates,workedtoestablishtheConsortiumasaUS-basednot-for-profitcollectiveofsicklecellstakeholdersandopinionleaders.TheConsortium’sfirstofficialactwastoorganizeandsupporttheattendanceofWarriorsandCaregiversto2014(and2015)SCDAAAdvocacyDayonCapitolHill.TheConsortiumbecameanofficial501(c)3designatednon-profitinAugust2015andheldthefirstLeadershipSummitandGeneralAssemblyofCBOsinMarch2016.

OrganizedinamannersimilartotheUnitedNations,ConsortiumpartnerCBOsretaintheirautonomy,whileunitingtoapplyamodelofCollectiveImpacttotackledeeplyrootedsocial,mediaandlegislativeproblemsandbarriers.TheCBOs, alongwithCommunityPartners andPatient/FamilyAdvisors,work together to identify anddirectly addresscommunity needs. The General Assembly, comprised of Partner CBOs and advisors, form the decision-making body of theConsortiumtaskedwithformingmutuallybeneficialpartnershipstodevelopandexecutestrategiesandsolutionstoaddresstheneeds,gapsandconcernsidentifiedbythecollectivesicklecellcommunity.

Althoughweareayoungorganization,byworkingcollectively,Consortiumpartnershaveaccomplishedagreatdealinaveryshortamountoftime.In2016,weprovidedover$50,000intravel,lodgingandregistrationforpatientsandcaregiversto#SpeakUpand#ShowUpforsicklecellandhelpedtocoordinatepatient/caregiverparticipationinsponsoredmeetingsandfocusgroupsthroughoutthecountry.TheJulySickleCellPatientandFamilyEducationSymposium,co-hostedbySickleCell101, IASCNAPAandSickleCellWarriors, Inc.,wasattendedbyover100patients, caregivers,researchersandproviders.Allworkshops,panelsandeducationsessiontopicswerechosenbysicklecellpatientsandcaregivers.WelaunchedourPatient-CenteredOutcomesInitiativeandformedtheMentalHealthWorkgroup,theSickleCellMensActionNetwork(M.A.N.)andtheTransitionWorkgroup.ThefirstprojectinthePatient-PoweredEducationalLiterature serieswas developed, funded and completed.Thefinal product “AGuide to Livingwith SickleCell”waswrittenforsicklecellwarriorsbysicklecellwarriorsandisnowavailable.

Together, thepatients,caregiversandsupportersof theConsortiumhaveworkedtodefineandalter the landscapeofthesicklecellcommunityforcurrentandfuturegenerations.Allprojectsarecreatedandcompleteddirectlybyourcommunity.Weareonlyabletosucceedbyworkingasacollectiveunitandinviteallwarriors,caregiversandCBOstoworkwithusasweequipandempowerthesicklecellcommunitytobecomefullparticipantsandleadthechargeinsicklecelladvocacy,education,research,legislationandpolicy.

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RECOGNITION

AWARD

Southern Regional Education Board (SREB) Doctoral Scholar

Fisher Scientic Award for Overall Excellence in Biomedical Research

FOUNDER ABOUT THE SICKLE CELL COMMUNITY CONSORTIUM

SICKLE CELL CONSORTIUM LEADERSHIP SUMMIT AND GENERAL ASSEMBLY| #SC3SUMMIT2019 WWW.SICKLECELLCONSORTIUM.ORG | 2019

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Special Leadership Council

SC3Programs,Platforms&InitiativesLunch-CollectiveImpactandthePowerofPatientVoiceOvercoming the Access Barrier

TUESDAY, MARCH 12Leadership Summit & General Assembly of Patients, Caregivers, and CBOs

RegistrationOpeningReception&PartnerMeet-n-Greet

CreativeContent

WEDNESDAY, MARCH 13

Leadership Summit & General Assembly of Patients, Caregivers, and CBOs

Opening of the General Assembly ResearchReview-HopeOnTheHorizonLunchConsortiumPartnerOnboardingCreativeContentWorkshop&Lab

THURSDAY, MARCH 14Leadership Summit & General Assembly of Patients, Caregivers, and CBOs

Breakfast GeneralAssemblyStrategySessionI

LunchGeneralAssemblyStrategySessionIICreativeContentWorkshop&Lab

FRIDAY, MARCH 15

Leadership Summit & General Assembly of Patients, Caregivers, and CBOs

Breakfast Public Policy & AdvocayTrackA:Community-BasedOrganizationsTrackB:IndependentPatient/CaregiversLunch-InfrastructureCommitteesBusinessMeetingSC3KidsLeadershipTeamCreativeContentClosingofthe4thGeneralAssemblyofPatients,Caregivers, & CBOs

SATURDAY, MARCH 16Special Best Practices Training Sessions

GrantWritingTrainingLunch-NavigatingOnlineGrantPortals

DAY1-Vision,Design,CapacityGrantWritingWorkshop:OfficeofMinorityHealthResourceCenter

SUNDAY, MARCH 17

Special Best Practices Traning Sessions

DAY2-GRANTWRITINGTRAINING–Vision,Design,CapacityGrantWorkshop:OfficeofMinorityHealth

Resource Center

Lunch-SMARTObjectivesandSkillsBuilding

MONDAY, MARCH 18

O U R S P O N S O R S& S U P P O R T E R S

A T - A - G L A N C E



PARTNERSSERVICESWe are pleased to offer a variety of services to our partners. The services vary by day and time. Availability is in order of sign-up. Time slots are limited. All partners are encouraged to sign-up at registration. Please arrive promptly, prepared for the chosen service.

HeadshotswithSharondaHudsonof610Designs&CompanyA headshot is a good opportunity tomake a lasting impression in a professionalmanner. 610Designswill be on site to capture headshots photography for eachpartner. The imagewill be available to save on your Consortium flash drive thefollowingday..Sign-upatthecreativecontentworkshop.PleasecontactSharondaHudson @ [email protected]

AccountingConsultationswithDorisBailey,Asst.DirectorofFinanceSign-upfora30minuteone-on-onesessionwiththeConsortium’sAsst.DirectorofFinance.ComepreparedtoaskspecificquestionsrelatedtoyourCBOs.Non-profit990sareduesoon.Thisisanexcellentopportunitytogetyourquestionsanswered.

DigitalContentCheck-UpswithPatSmithofOnlineMediaInteractiveThese30minone-on-oneconsultationswithPatriciaSmithwillreviewyourwebsiteand/orsocialmediaprofilestoensurefulloptimizationandutilization,andhowtobestcatertoyourweb-basedaudience.

ProductPlacementandCBOBrandingPhotoswith610Designs&CompanyBring your CBO merchandise and models to obtain professional photography for yourwebsites,publicationsandsocialmediaprofiles.Wewillnotbeprovidinghairand make-up during these photography sessions. Come ready to shoot and go.

CreativeContentLaboratoryOpenSpaceSTARTNOW!Creatingwithwhatyouhave!!!ParticipantsoftheCreativeContentLab.TheuseofthisspacewillBeexplainedduringtheoverview.IfyouhaveanyquestionsorconcernspleaseemailSharondaatmedia-marketing@sicklecellconsortium.org

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DORIS BAILEY, MFIN

DorisBaileyistheAssociateDirectorofFinancefortheSickleCellCommunityConsortium.ShecompletedherB.S.inBusinesswithaconcentrationinAccountingfromIndianaUniversity-Bloomington,followedbyaM.S.inAccountingandFinancialManagement.Sheistheparentofasicklecellwarriorandhasbeenavocal advocate for over 30 years.

ASSOCIATE DIRECTOR OF FINANCE

ERIC NTI-FREMPONG, CPA, MTAX, PMP

EricFrempongistheDirectorofFinancefortheSickleCellCommunityConsortium.Heispresidentofaprofessionalfirmspecializinginindividualincometaxpreparationandplanning.HealsopreparedS-Corporationfinancialstatement and income taxes.

DIRECTOR OF FINANCE

KIMBERLY M. DAVIS

DiagnosedwithSickleCellAnemia,typeSSattheageof11,Kimberlyisadedicatedandhardworkingindividualwhohasovercomemanyofthechallengesfacedbythosefightingthebattleagainst sickle cell disease.

WithanearnestdesiretoincreaseawarenessofSCDandtoseemarkedimprovementinthecareandtreatmentofthosewhosufferfrom SCD, including her 12 year old niece. She seeks to inspire and providehopeforallofthosewhobattledailywiththisegregiousdisease.Kimberlyiscommittedtotheideaofbeingthechangethatshewantstosee.

ADMINISTRATIVE COORDINATOR FOR GEORGIA

OUR GREATTEAM!

RAYMONA LAWRENCE, DPH, MPH, MCHES

Dr.RaymonaH.LawrenceisanAssociateProfessorofCommunityHealthBehaviorandEducationintheJiannPingHsuCollegeofPublicHealthatGeorgiaSouthernUniversity. Her main research focus is community engagement in rural, hard toreachpopulations-especiallythosewithSickleCellDisease.Herapproachtoresearchisprimarilyqualitative.Dr.Lawrencehasbeenaninvestigatoronnumerousruralhealthandsicklecelldisease-relatedgrants.Dr.LawrenceiscurrentlyadualprincipalinvestigatorwithDr.IfyOsunkwoona$9.7millionPatientCenteredOutcomesResearchInstitute(PCORI)grantentitled,Comparativeeffectivenessofpeermentoringversusstructurededucationbasedtransitionprogrammingforthemanagementofcaretransitionsinemergingadultswithsicklecelldisease.Dr.LawrencealsoservesastheDirectorofResearchfortheSickleCellCommunityConsortiumandastheEditorinChieffortheJournaloftheGeorgiaPublicHealthAssociation.

DIRECTOR OF RESEARCH

ALEXIS WARDLOW-PERRY

AlexisJ.W.Perryisa25yearoldyoungadult,livinginLosAngeles,CaliforniathatwasdiagnosedwithSickleCellSSatbirth.Shehasbeendealingwithmanyhealthissuessince,includingbeingdiagnosedwith2otherchronicdisorders.Afterhighschool,AlexisdecidedtofollowherpassionandattendCulinaryschool,andwentontograduatewithhonors.ShortlyafterworkingforstarsinHollywood,CA,shebecameanonlineE-Nutritionist,helpingotherindividualsmanagetheirchronicdisordersthroughbalanceddieting.ShenowworkswiththeSickleCellConsortiumastheDirectorofPrograms,workingonprojectsandinitiativestobenefittheSickleCellCommunityasawhole.

PROGRAMS MANAGER

NIKKI PETERSON

NikkiPetersonisasicklecellwarriorlivinginPrincessAnne,Maryland.NikkihasabachelorsdegreefromBennettCollegeinSpecialEducationandamastersdegreeinSchoolAdministrationandinSpecialEducationfromUniversityofNorthCarolinaA&T.SheiscertifiedtoteachallsubjectsandareasofspecialeducationfromBirthtothetwelfthgrade.NikkiisthefounderandCEOofTutor’s-R-Us.Tutor’s-R-Uswascreatedoriginallyjustasatutoringcompany.CurrentlyTutor’s-RandUshelpsstudentsandtheirparentswithhomework,withcreating504plansandIEP’s,andadvocatingforthemintheclassrooms,schoolsystemsandinthecourtroomswhenneeded.Theyalsoeducatedtheparentsonwhat504plansandIEP’sareandwhatIDEAisandthelawsofspecialeducationandtheimportanceofhavingtheirchildidentifiedasapersonwithspecialneeds.Nikkihasbeenwithconsortiumsincetheideaofapatientrannon-profitorganizationwasadreamonDr.LakeiaBailey.CurrentlyNikkiservesasspecialprojectsmanagerandastheeducationalspecialistandliaison.

SPECIAL EDUCATION SERVICES


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JANEEN GREENEEVENTS COORDINATOR

OUR GREATTEAM!

A28yearcareerintheflightindustryJaneenisgratefultohavesurvived9/11/2001andacompanymerger.JaneenisevenmoreThankfulthatGodhasenabledhertoworkandraiseafamilythroughitall.SkilledinsafetyandsystemsnegotiationJaneenhasdevelopedadiscerningabilitytoassesssituationsandpeopleandcarefullyguidethespacewherethyintersect.SheisalsoFirstAidandCPRcertifiedandhasaFederalAviationAdministrationSecurity clearance.

JaneenislivingwithSickleCellThalassemiadisorder.Twoofherchildren also carry the sickle trait. At 2 years old she began to fallandalwayswantingtobecarried,whatmanythoughtwasspoiledturnedouttobeSickleCell.Afteryearsofflare-upsandhospitalizations,thisdiagnosiswasfinallyconfirmedforherwhilea19yearoldcollegestudentlivinginadormitory.ItwasGod’sgracethataMediterraneanphysicianrecognizedthesymptomsandknewwhichmedicaltesttoorder.Graceagain.JaneenisamemberoftheSickleCellCommunityConsortiumundertheleadershipofDr.LaKieaBailey.ShehasrepresentedtheConsortiumandprovidedinformationinherlocalcommunityaswellasonCapitalHill.Janeensaysan“ounceofpreventionisworthapoundofcure”.Shetellseveryoneassoonasyoumeetapotentialpartner,askswhat’stheirsicklecellstatus.Iftheyhavethetraitandyouhavethetraityou can only be friends for life.

JaneenJVGreenehasaBachelorsdegreeinSocialWorkfromBuffaloStateCollegeSUNY.In1999shebecameaMaryKayrepresentativeandisregularlyavailableforconsultations,salesandparty planning.

JaneenisamemberoftheFaithMissionaryBaptistChurchinBuffaloNewYorkwhereElderJamesRBanks,IIisPastor.Sheisthemotherofthreesuccessfulchildrenandismarried.JaneenissoveryThankfulforherVillagewhoraisedher,lovedonherandstoodinthegapasneeded.Thistraditioncontinueswithheroffspring.To God be the Glory for the marvelous things He has done.

SHARONDA HUDSONSharondaHudsonistheFounderandLeadAdvocateatTheRedChairProject.FoundedinFebruaryof2014,theorganizationprovidesSupport,EducationandEmpowermentforSickleCellWarriors,theirfamiliesandtheircommunities.ThroughherworkwithTheRedChairProject,Sharondareceivedthe2015PhilanthropyAwardfromDFWTeenFashionWeek.Shealsohostsconcerts,photoshootsandother“projects”tocontinuetoforwardthemovementforSickleCellawareness.Aphotographerbytrade,Sharondalearnedhercraftorganicallyandalmostbychance.Afteranunexpectedlayofffromherjob,Sharondabegantakingpicturesofhernephewsbothtohelphersistercapturethosefirstpreciousyearsandasapersonalformoftherapy.Overtime,shedevelopedquiteaneyefortakingqualityphotosandbeganvolunteeringandapprenticingunderotherphotographerstocontinuetodevelopherskills.SomeofherclientshaveincludedgospelartistssuchasCandyWest,KirismaEvans,CedricRivesandBET“Sunday’sBest”Winner,AmberBullock.ShehasshotphotosformagazinepublishersBeYou!GirlMagazineandElisiaMagazineaswellasnonprofitsTheSocietyofWomenWhoLoveShoesandMinnie’sFoodPantry. Singer, actor and personal friend Cedric Rives once nicknamed her “Cupcake”becauseSharondawas“thesweetestpersonhe’devermet.”Truetohername,Sharonda“Cupcake”Sikessweetensthelivesofallthosearoundherthroughtakingphotos,givingbackandlivingeverydaywithenormouslove,alight-heartedspiritanda“infectious”personality.Forsicklecellawarenessevents or speaking engagements, visit our contact page here trcpinfo@gmail.

MEDIA & MARKETING MANAGER

MARIA RIVERA

MariaElenaRiveraisacaregiverlivinginCalifornia,workingasanAdministrativeAssistantfortheSickleCellCommunityConsortium,andshebecameinvolvedafterbeingacaregivertoadaughterwithSickleCellDisease.Herdaughterisa25yearoldpatient,whoiscurrentlyundergoingthebonemarrowtransplantprocess.Mariaisdeeplypassionateaboutraisingawarenessforsicklecelldiseaseandbeingasupportivecaregivertoherdaughteraswellastoothercaregivers.BothmydaughterandIlovetohelpouttheSickleCellCommunityConsortiuminanywaythatwecan.MariahashelpedtheConsortiumbymanagingtheregistrationtablesattheirvariousevents,helpingwithanySpanishtranslationsthatmayhavebeenneeding,andhelpingDr.LakieaBaileywithanyrequests.MariaisalwaysinspiredtohelpandworkwiththeSickleCellCommunityandtheConsortium,inraisingawarenessforsicklecelldisease,andtohelpimprovethelivesofSickleCellwarriorsandotherCaregivers.

SPECIAL PROJECTS COORDINATOR

DOMINIQUE GOODSONSPECIAL PROJECTS COORDINATOR

DominiqueGoodsonwasbornandraisedinNewark,NJ.AftergraduatingfromRutgersUniversitywithadegreeinSociologyandAnthropology,Dominiquebeganworkingasresearchassistanttoprofessorsatdifferentuniversities.Duringoneofherbreaksbetweenresearchprojects,sheworkedasaBusinessDevelopmentSpecialistatEagleDetectiveAgency,wheresheworkedtogainnumerouscontractsincludingtheNFLSuperBowlNY/NJ2014contract.DominiqueresignedfromEagleDetectiveAgencyin2014,tofocusonherpassionswritingandadvocatingforSickleCellAnemia.HavingSickleCellAnemiaherself,DominiqueworkswithmanyotherSickleCellCommunityBasedOrganizationstohelpnotonlygetinformationtopeopleaboutSickleCellAnemia,butalsotohelpSickleCellAnemiapatientsandcaregivers.ShehasbeenusinghersocialmediaplatformSickleCellDiseaseCommunityForumforthelastyearequipping,empoweringandencouragingthecommunity.


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YOLANDA LEWISWEBSITE MAINTENACE

SHAYLAWALKEREXECUTIVE ASSISTANT

YolandaLewisisanadvocateatheartwhousesherdiversebackgroundtominister,mentorandeducatewithinhermultiplespheresofinfluence.Herheartforpeopleextendsintoaroleasamentormomforaninternationalorganization,aswellasprovidingone-on-oneencouragementtothoseexperiencingtransitionsinlife.Yolanda’sadvocacyisreallyondisplaywithintheSickleCellDiseasecommunity.YolandahascreatedaseriesofeducationalvideosforConquerors.Yolandaiscurrentlyprovidingwebcontentupdatesupport,socialmediapresence(Parent2ParentInitiative)andlimitedadministrativesupporttotheSickleCellConsortium.Asawife,motheroffour,andcaregiverofachildwithSCD, Yolanda stays very busy by volunteering. Yolanda believes thatbyadvocatingonbehalfofothers,theconnectionbetweencareprovidersandcaregiversisthekeytosustainedpositivecare.


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Friday, March 15 (Piedmont)

9:00 AM - BREAKFAST *SPONSORED BY: BLUEBIRD BIO Talk Saves Lives: Peer-to-Peer Mental Health Training: Taylor Chambers Grief&Bereavement:Curtesy&Etiquette:ClaytonAndrews

10:00 AM - GENERAL ASSEMBLY STRATEGY SESSION I MentalHealthPriority(2016Priority):ClaytonAndrews SickleCellAnthology(2017Priority):KadeemGayle SickleCellToolkits(2017Priority):Dr.WandaShurney ClinicalTrialsInitiative:Dr.MarieOjiambo DiversityOutreach(2018Priority) SickleCell&Aging(2018Priority)

1:00 PM - LUNCH *SPONSORED BY GLOBAL BLOOD THERAPEUTICS GBT440:Dr.KenBridges CURESICKLECELLINITIATIVE(CureSCi):Dr.Benz

2:00 PM - GENERAL ASSEMBLY STRATEGY SESSION II

SickleCellExemptioninOpioidPolicies:ASuccessStory:GeorgeCarter

EDInitiative:GoingPositive:DominiqueFriend,ChandraWhite-Cummings

TransitionWorkgroup/Toolkit(2017Priority):AlexisWardlow-Perry

SickleM.A.N.(2016Priority):ClaytonAndrews

NationalAwarenessCampaign(2018Priority)

6:00 PM - CREATIVE CONTENT WORKSHOP & LAB - Sharonda Hudson

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AGENDA CONT.

Thursday, March 14 (Piedmont)10:00 AM - OPENING OF THE GENERAL ASSEMBLY Welcome:CollectiveImpact:Dr.LakieaBailey Partner Services

10:30 AM - RESEARCH REVIEW – HOPE ON THE HORIZON Patient-PoweredResearchAgenda:Dr.RaymonaLawrence Update on Endari: Mark Diamond HRSA - EMBRACE: Shirley Miller ASHClinicalTrialsNetwork:Dr.LakieaBailey ACEP–EDSC3 STAR/NMDP PalliativeCare:Dr.WandaShurney

1:00 PM - LUNCH *SPONSORED BY VERTEX/CRISPR - Matthew McLeod Creatingtransformstivegene-basedmedicinesforhemoglobinopathies

2:00 PM - CONSORTIUM PARTNER ONBOARDING *Closed Session*

ConsortiumOrganization&Infrastructure:Dr.LakieaBailey Credentialing,Partnership&Dissolution:DominiqueGoodson Code of Conduct, Ethics: Esterphine Greene RobertsRulesofOrder:JaneenGreene SC3Roles,Positions&Committees:Dr.LakieaBailey

6:00 PM - CREATIVE CONTENT WORKSHOP & LAB - Sharonda Hudson

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AGENDA

Tuesday, March 12 (Piedmont)

TUESDAY, MARCH 129:00AM-SC3Programs,Platforms&Initiatives:HighLevelSummary

1:00 PM - LUNCH: COLLECTIVE IMPACT AND THE POWER OF THE PATIENT VOICE

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Wednesday, March 13 (Piedmont)

2:00PM-RegistrationDeskOpens4:00 PM - OPENING RECEPTION & PARTNER MEET-N-GREET Welcome:SC3Staff NetworkingActivities&Icebreakers:BLFSC MemoryBook:Jontrece,Jazmine,DiamondRay:SharondaHudson CreativeContentSponsorshipRemarks:HollyJohn6:00PM-CreativeContentOverview

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SICKLE CELL CONSORTIUM LEADERSHIP SUMMIT AND GENERAL ASSEMBLY| #SC3SUMMIT2019

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AGENDA

Saturday, March 16 (Piedmont)

9:00 AM - BREAKFAST *SPONSORED BY NOVARTIS PHARMACEUTICALS10:00 AM - Public Policy & Advocacy: Dr. Chic Smith

11:00 AM - TRACK A: COMMUNITY-BASED ORGANIZATIONS BestPractices:Infrastructure&CapacityBuilding

11:00AM-AccesstoFederallyQualifiedHealthCenters:Dr.WandaShurney DrivingOperationalEffectivenesswithDigitalTechnologies:PatriciaSmith GrantWritingOverview:OMH

TRACK B: INDEPENDENT PATIENT/CAREGIVERS (Peach Tree C) BestPractices:ExpertAdvocacyTraining

11:00AM-DressforAdvocacySuccess#AdvocatingStyle Expert Advocacy Training - Telling Your Story: Tosin Ola 501c3 for jCBOs: Dan Moore Building Your Advocacy Resume - Dr. Lakiea Bailey

1:00 PM - LUNCH: INFRASTRUCTURE COMMITTEES

2:00 PM - BUSINESS MEETING

2:00 PM - SC3 KIDS LEADERSHIP TEAM: STRATEGY SESSION

4:00 PM - CREATIVE CONTENT - SHARONDA HUDSON

CLOSING OF THE 4TH GENERAL ASSEMBLY OF PATIENTS, CAREGIVERS, CBOS

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Monday, March 18 (Piedmont)GRANT WRITING TRAINING

VISION, DESIGN, CAPACITY GRANT WORKSHOP: OFFICE OF MINORITY HEALTH RESOURCE CENTER – DAY 2

10:00AM-RecapandReviewofVDCElements LogicModels-WritingLab

12:00 PM - LUNCH SMART Objectives and Skills Building Practicum/Learning Lab

1:00PM-EvaluationMethodology FederalGrantApplicationProcessSummaryandEvaluations

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AGENDA CONT.

Sunday, March 17 (Piedmont)

GRANT WRITING TRAINING

10:00AM-IntroductiontoPrivateFoundation/PhilanthropicGrantFunding:LocatingPrivate/PhilanthropicGrantResources IdentifyingPartnerships&PrivateFundingGrantCycles:Dr.ChicSmith

12:00 PM - LUNCHNavigatingOnlineGrantPortals-Dr.LakieaBailey

VISION, DESIGN, CAPACITY GRANT WRITING WORKSHOP: OFFICE OF MINORITY HEALTH RESOURCE CENTER – DAY 1

1:00PM-IntrotoGovernmentGrants FacilitatedVision,Design,&Capacity ProposalDesign-PartsoftheGrant:“SharetheDream” ProposalDesign:PartsoftheGrant:TechnicalReviewintheProposalNarrative

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A CLOSER LOOK


A CLOSER LOOK CONT.

Pat Smith - Driving Operational Effectiveness with Digital Technologies Thissessionfocusesontheevolvingroleofdigitaltechnologiesintheday-to-dayoperationsofnon-profitslarge and small. Emphasiswill be placed on understanding the importance of key performance indicatorsandhowtechnologycandrivethecollection,analysisandreportingoftheinformationinawaythatinformsconstituents,andimprovesbothnewfundraisinganddonorretention.

George Carter - Sickle Cell Exemption to Opioid Policies and Overcoming the RestrictionsThissessionwilloutlinewhatwasdoeninVirginiatogetanexceptiontotheopioidguidelinesandwhatcanbe done in other states.

Funmi Makinde, MPH, CHES; Elton Naswood - Overview of Government Grants Broad OverviewWhatyouneedtoknowwhenapplyingforgovernmentgrants

Funmi Makinde, MPH, CHES; Elton Naswood - The VDC (Vision, Design, Capacity) WorkshopImproving the Skills of Technical Writers TheVDC(Vision,DesignandCapacity)WorkshopshavebeenconductedinavarietyofcommunitiesacrosstheUnitedStatessince2002.Theworkshopshaveimprovedthewritingskillsofparticipantsandincreasedtheirunderstandingof thecomponentsandusual requirementsofcompletingsuccessfulgrantapplications.Thetrainingswereinitiallyofferedtocommunity-basedorganizationsandhavesinceexpandedtoaddressresearchfundingatinstitutionsofhighereducationintheUnitedStates.Participantsaresequentiallyengagedthroughlecturesandinteractiveexercises,over1-2days.Wereviewprinciplesoftechnicalwriting,practicestrategiestorelayinformationingrantapplications,andsharethetipsandstandardsGrantReviewersuseastheyscreenapplicationsgoingtotheFunder.

Taylor Chambers, MPH - Talk Saves Lives: Peer-to-Peer Mental Health Training TalkSavesLivesisacommunity-basedpresentationthatcoversthegeneralscopeofsuicide,theresearchonprevention,andwhatpeoplecandotofightsuicide.Attendeeswilllearntheriskandwarningsignsofsuicide,andhowtogether,wecanhelppreventit.Followingthepresentation,attendeeswillhavetheopportunitytoaskquestionsandlearnhowtheycanpresentthetraininginthecommunity.

Matthew Mcleod - Creating Transformative Gene-Based Medicines For HemoglobinopathiesOverviewofCRISPRTherapeuticsapproachtotreatinghemoglobinopathies

Raymona Lawrence - COMPASS: Guiding The Direction Of Community-Engaged Sickle Cell Disease Research

Clayton Andrews - Grief, Loss And BereavmentTheprocessofbereavement:whatitmeanstogrieve,howtogrieveandwhat“movingon”means.

Shirley Miller - Education And Mentoring To Bring Access To Care (EMBRACE) TheEMBRACEProjectseekstoexpandaccesstoqualitycare,improvecaredelivery,andprovideknowledgeandsupportviaECHOclinics(virtualgrandrounds)presentingpatientcasepresentationsfordidacticlearningand mentoring.

Tosin Ola - Expert Advocacy Training - Telling Your Story Thisisforadvocatestakingtheiractivismtothenextlevel.Learnhowtotellyourpersonalstoryinashort,impactful,andmotivating,tocreateawarenessandchangeintheaudience.

Edward J. Benz, Jr., MD - CURE SICKLE CELL INITIATIVE TheCureSickleCellInitiative(CSCI)isacollaborativeefforttoutilizeaninnovativemechanismcalledtheOtherTransactionalAuthority(OTA)toprovideresources,funding,andconveningpowerforprojectsand engagements that will accelerate the application of emerging gene therapy and gene-editingtechnologies to curing sickle cell syndromes. The root cause of Sickle Cell anemia, a change in one code letteroutoftheentirehumangenomehasbeenknownfordecades,butmethodstocorrectorreplacetheerrorarejustnowemerging.CSCIwillutilizeamoreflexibleapproachmadepossiblebytheOTAtosupportinnovativeprojectstodeployresourcesthatcannototherwisebefundedandeffortstoengagemorepatientsandfamiliesintheclinicalresearchthatmustbedoneinordertodevelopacure.

Shamonica Wiggins - #AdvocateInStyleBestpracticehowtodressforsuccesswhenadvocating.I’llincludewarriorstomodelexampleoutfits&haveagiftcardraffle.

Lakiea Bailey - ASH Clinical Trials NetworkUpdateonnewlycreatedClinicalTrialsNetworkoftheAmericanSocietyofHematology

Lakiea Bailey - Emergency Department Sickle Cell Care Coalition (EDSC3) Update on the projects and plans of EDSC3, created by the American College of Emergency Physicians

Wanda Shurney - Palliative CareDispellingTheMythThatPalliativeCareIsOnlyForTheDying

Wanda Shurney - Access to Federally Qualified Health CentersEngagingFederallyqualifyHealthCentertoprovideprimarycareforadultslivingwithsicklecelldisease

Ken Bridges - Global Blood Therapeutics: An update on GBT440

Dan Moore - 501c3’s for jCBOs AnoverviewofIRSrequirementsandtheprocesstoformallydevelopingandfilingyou501c3

Sharonda Hudson - Creative Content


MATTHEW MCLEOD

MattMcLeodworksastheExecutiveDirectorofProgramManagementatCRISPRTherapeutics.Overthelast15yearshe’sfocuseddrugdevelopmentprogrammanagementacross3oncologycompanies.He’sexcitedtohavereturnedtohisrootsingenetherapy,whichhestudiedandworkedonattheUniversityofPennsylvania(MS)andMIT’s(SB)WhiteheadInstitute.Outsideofwork,heandhiswifeKatehave3boys, ages 8, 6, and 3, and he enjoys coaching their hockey, drinking craftbeer,andcurling.

SPEAKER

CLAYTON ANDREWS

ClaytonAndrewsisa35-year-oldSickleCellWarrior,husband,andfatherof four residing in Augusta GA. Clayton is the Chair and co-founderoftheSickleCellChampionsAssociation(SCCA),amentoringorganizationgearedanddesignedfortheguidanceandempowermentofyoungmaleswithSCDfortheirtransitionintoadulthood.SincegraduatingTroyUniversitywithaMasterofScienceinCounselingandPsychology,hisprimaryfocushasbeentosustainanddeveloptheself-sufficiencyofmentalhealth.Clayton’sultimateobjectiveistobecomeapositiveinfluenceandmentortohispeersintheSCCommunity,andadvocatingforyoungmaleswiththisdisease.

SPEAKER

MARIE OJIAMBO

TrainedatStJohn’sUniversity,CollegeofPharmacyandHealthSciencesinNewYork,MarieOjiamboisaFormulationScientistbyprofessionspecializingindrugresearchanddevelopment.SheisalsoaSickleCellwarriorandaglobaladvocate.Diagnosedattheageof1,Marieherknowledgeandtoraiseawarenessaboutsicklecelldisease(SCD).

CurrentlyconsultingwithPfizerInc.andSCDAA,Ojiambousesherexperiencestoinformresearchers,advocatesandvariousstakeholderswithintheSCDspaceonstrategiestoadvancethehealthcareandtreatmentoptionsavailabletosicklecellwarriors.

In2013,MariefoundedtheSickleStrongInitiative,aKenyanbasedNGOwhosemandateistoraiseawarenessaroundSCDandtoadvocateforbetterhealthcareopportunitiesforpatientsinKenya.ThroughSSI,shehasbeenabletohostmedicaltrainingandawarenesscampaignsforpatientsinKenya.Marieisalsotheproprietoroftheannualsicklecellpublicawarenessforum,Ongea(‘speakout!’inSwahili).ThisannualsummitthattakesplaceeveryJuneinKenyatocommemorateWorldSickleCellDay,andprovidesaplatformforsicklecellwarriorstospeakoutabouttheircondition,andinteractwitheachother.Italsoprovidesanopportunityforpatientstochallengethegovernment,thepharmaceuticalindustry,insurancecompanies,thepubliconwhatisbeingdone to improve the health care and environment that they are exposed to. HerinitiativehostedthethirdeditionofOngeaonthe18thofJune2016,whichbroughttogetheranestimated300warriorsandtheirfamilies.

SPEAKER


SHIRLEY MILLER

Shirley Miller has more than 20 years of experience in sickle cell disease inprogramdevelopmentclinicaltrialsandpatientadvocacy.ShehasservedontheComprehensiveCentersClinicalTrialsConsortium,theNHLBISickleCellAdvisoryCommitteeaswellasothereducationalcommittees.PriortoherworkinCharlotte,ShirleyworkedattheSouthwesternComprehensiveSickleCellCenterinDallas,TexaswithDr. George Buchanan, one of the many pioneers in sickle cell disease. Shehasestablishedherselfasaknowledgeableandconfidentspeakerand advocate as it relates to living and managing a chronic illness such assicklecelldisease.ShecurrentlyworksinCharlotte,NCatAtriumHealth(formerlyCarolinasHealthCareSystem)inanAdultSickleCellProgramdirectedbyDr.IfyOsunkwo.ShirleyholdsaBachelorofBusinessAdministrationfromNorthwoodUniversityandaMastersinPsychologyfrom the Chicago School of Professional Psychology. She has served on theboardofdirectorsfortheSickleCellDiseaseAssociationofAmericaandcurrentlyservesontheNHLBISickleCellAdvisoryCommitteeandtheFDAAdvisoryCommitteefortheapprovalofnewOncologicDrugs.Sheistheauthorofthebookentitled“TheStrangerWithinMe”,thestoryofherjourneylivingwithsicklecelldisease.

SPEAKER

SPEAKERS

WWW.SICKLECELLCONSORTIUM.ORG | 2019


EDWARD J. BENZ, JR., M.D., F.A.C.P

Dr.BenzisPresidentandChiefExecutiveOfficerEmeritusoftheDana-FarberCancerInstitute,DirectorEmeritusoftheDana-Farber/HarvardCancerCenter,RichardandSusanSmithDistinguishedProfessorofMedicine,ProfessorofPediatricsandGeneticsatHMSandExecutiveDirectoroftheNIH’sCureSickleCellInitiative.

AgraduateofPrincetonUniversity(cumlaude),andHMS(1973,magnacumlaude),wherehereceivedtheSomaWeissandLeonResnickResearchAwards,hetrainedininternalmedicineandhematologyatBrighamandWomen’sHospital,BostonChildren’sHospital,NIH,andYale.BoardcertifiedinInternalMedicineandHematology,heisanactivehematologistwithspecialexpertisein inherited anemias.

BenzservedpreviouslyasProfessorofMedicineandGenetics,ChiefofHematology,andViceChairoftheDepartmentofInternalMedicineatYale(1978–1993);JackD.MeyersProfessor,andChairmanoftheDepartmentofMedicineattheUniversityofPittsburgh(1993–1995);PhysicianinChief,DirectoroftheDepartmentofMedicine,andSirWilliamOslerProfessoratJohnsHopkins(1995-2000).

Hisresearch,startedinmedicalschool,identifiedmoleculardefectsunderlyinghemoglobinopathies,andsubsequentlycontributedtoourunderstandingofthemolecularpathologyoftheredcellmembranecytoskeleton.Hewasinstrumentalinfoundingoneofthenation’sfirstFamilyMedicineResidenciesinLancaster,Pa.,whileanHMSstudent.

BenzandDr.RonaldHoffmanarethefoundingco-editorsofHematology:PrinciplesandPractice.ItwontheFirstPrizeAwardforTextbooksfromtheBritishMedicalSociety.Hewasco-editoroftheOxfordTextbookofMedicine,Ed.4,whichreceivedtheRoyalSocietyofAuthorsTextbookFirstPrizeAward.HewaspreviouslyanassociateeditoroftheNewEnglandJournalofMedicine.

HeisamemberoftheNationalAcademyofMedicine,theAmericanSocietyofClinicalInvestigation(pastPresident),AssociationofAmericanPhysicians,PhiBetaKappa,AlphaOmegaAlpha,theAmericanAcademyofArtsandSciences,theAmericanClinicalandClimatologicalAssociation(pastPresident),andanelectedFellowoftheAmericanAssociationfortheAdvancementofScience.He has also served as president of the American Society of Hematology, the FriendsoftheNationalInstituteofNursingResearch,andtheAssociationofAmericanCancerInstitutes,andChairpersonoftheNationalCancerPolicyForum.HeisontheBoardsofDirectorsoftheAmericanCancerSocietyandtheMountDesertIslandHospital.

Activeinthecommunity,heisthe2011HonoreeoftheWhittierStreetHealthCenterforhisworkinHealthDisparities,hewasnamedHeroinMedicinebytheMassachusettsVNA,andreceivedtheLeadershipAwardfromGlobalHealthCatalystSummitin2016,the2016ClarionAwardfromtheAlbertSchweitzerFellowshipFoundation,andtheInnovatorinHealthCareAwardfromtheNetworkforExcellenceinHealthcareInnovation.

HelivesinBostonwithhiswife,Dr.MargaretVettese,adistinguishednurse-researcher/educatorinthefieldofpsychosocialoncology.Theyhavefourchildren and eight grandchildren.

SPEAKER


KEN BRIDGES

Dr.KennethR.BridgesreceivedtheMDdegreefromHarvardMedicalSchool,andsubsequentlytrainedininternalmedicineandhematologyinBoston,atMassachusettsGeneralandBrighamandWomen’sHospitals,respectively.Followingmedicalsubspecialtytraining,Dr.Bridgesworkedon the biology of cellular iron metabolism for three years attheNationalInstitutesofHealthinBethesda,Maryland.Dr. Bridges returned to Harvard as a member of the HematologyDivisionatBrighamandWomen’sHospitalwhereheachievedthefacultyrankofAssociateProfessorofMedicine.Inparallelwithhislaboratoryinvestigationofironmetabolism,Dr.BridgesmaintainedactiveclinicalworkandestablishedtheJointCenterforSickleCellandThalassemicDisordersatBrighamandWomen’sHospitalandMassachusettsGeneralHospital,emphasizingbench-to-patienttranslationalresearch.Dr.Bridgespublishedover70peer-reviewedarticlesduringhisacademiccareer,aswellasnumberbookchapters.Healsoco-authoredwithDr.HowardPearsonofYaleUniversityatextbookonredcelldisordersandanemia.Dr.Bridgesleftacademiatoworkinbiotechnology,initiallywithHoffmanLaRochefollowedby3yearsatAmgenwhereheworkedonAranespandparticipatedinthelaunchofNplate.Dr.BridgesmovedtoOnyxPharmaceuticalswhereheoversawseveraltrialsinvolvingKyprolis(carfilzomib)forthetreatmentofmultiplemyeloma.FollowingtheAmgenacquisitionofOnyx,Dr.BridgesmovedtoGlobalBloodTherapeuticsintheroleofVicePresident,MedicalAffairsworkingthenewtreatment for sickle cell disease, GBT440.

SPEAKER

SPEAKERSCONT.



DOMINIQUE FRIEND

DominiqueFriendisanactivistforSickleCellDiseaseawarenessandresearchwhocurrentlyresidesinGeorgia,butwhogrewupinBaltimore,MarylandandattendedBaltimoreCityPublicSchools.Sheisamotherofthreewonderfulchildrenandhasonebeautifulgranddaughter.Althoughherillnesspreventedherfromgraduatinghigh school, she obtained her GED and then completed post-secondary coursesinCreativeWriting.Nowapublishedauthor,DominiquehascapturedtheessenceofherdailystruggleswiththeunpredictabilityandpainofSickleCellDiseaseinherautobiography,SICKLE,AStoryofPain,PurposeandPerseverance.Dominique’sstorywaswritteninanotherbookentitledUncommonChallenges;SharedJourneys.ShehasbecomeanactivistwhoisraisingawarenessofSickleCellDiseaseandadvocatingforimprovedtreatmentforpeoplelivingwithSickleCellDisease.SheisthefounderoftheSickleInternationalFamilyCoalition,aninternationalnetworkoffamilies,individualsandorganizations.

SPEAKER


GEORGE CARTERGeorgeCarterisa73-year-oldmalewhosufferswithSickleBetaZeroThalassemia.Hehasbeenworkingwithvarioussicklecellorganizationsforover40years.HeservesasaSickleCellDiseasePatientConsultantfortheFood&DrugAdministration(FDA)andontheInteragencyPainResearchCoordinatingCommitteeoftheNationalInstituteofHealth.Currently,heprimarilyservesastheAdministrator(unpaidExecutiveDirector)ofStatewideSickleCellChaptersofVirginia

StatewideSickleCellChaptersofVirginia,Inc.,alsoknownasSickleCellChaptersofVirginia,isanon-profit501(c)(3)tax-exemptcommunity-basedorganization,thathasanetworkofnine(9)community-basedorganizations(chapters)thatprovideavarietyofservicesacrosstheCommonwealthofVirginia.

GeorgeCarter’smainfocusistoadvocateforthosewhosufferfromSickleCellDiseaseanddistributeasmuchinformationaboutsicklecellandupliftingmessagestopatients.Around4,000AfricanAmericaninVirginiasufferwithSickleCellDiseaseandapproximately155,000haveSickle Cell Trait.

UnderGeorgeCarter’sdirectionandlobbing,StatewidehasreceivedoveronemilliondollarsinfundingfromtheStateofVirginiasince2008.ThefundshelpseveralchaptersprovideeducationandassistindividualsandfamilieslivingwithSickleCelltodevelopnecessaryskillsandresourcestoimprovetheirhealthstatus,familyfunctioning,andself-sufficiency.

SPEAKER

SPEAKERSCONT.



JESSICA M. YOUNG

Creative,Leader,Motivator...JessicaYoungknownasthe“QueenofShortFilms”hascreatedandproducedground-breakingvisualbrandingproductsthroughvideoproduction.Herkeeneyeforcreativityanddedicationtoexcellence,propelledhertolaunchJessicaYoungFilms,LLC.,wheresheistheCEOandExecutiveProducerforprojectsthathavegracedtheplatformsofBET,AMCTheatres,MorehouseSchoolof Medicine, the Department of Public Health for the State of Georgia, andcountlesseducational&community-basedorganizations.

Sheisalsoasoughtaftermotivationalspeakerthatissettingtrendsacrossvariousplatformsonthevalueofpursuingyourpurposewithpassion!

JessicaholdsanundergraduatedegreeinCommunicationStudiesandaMaster’sDegreeinEducationalLeadership.SheisanativeofCharlotte,NorthCarolina,butresidesintheATL,andhasatrueloveandpassionforthecityofAtlanta!

SPEAKER

DEVIN T. ROBINSON X, “EGYPT”Despite losing his mother at 12, having his father abandon him the same day and being classifiedasanorphan,Egyptmayhavebeenknockeddown…butwasn’tknockedout.

Overaspanof10years,Egypthasledalifemanyconsiderafairytale.HisworkinBlackhistorystorytelling,relationshipcounselingandHIVeducation/performingopeneddoorsmanyseldomsee.He’sappearedonOWN,MTV,BET,ApolloTheatertwice,TEDxtwice,FOXwithLeePittsinadditiontocountlessradioshows,magazineandperformanceappearances.EgypthassharedstageswithA-listcelebritiessuchasJohnLegend,AliciaKeysandMagicJohnson.Headoptedthename“Egypt”becauseheplanstoinfluencetheworldjustasthegreatAfricanempirehasinfluencedtheearth.

He’stouchedstagesinJohannesburgSouthAfrica,DohaQatar,Barbados,Haiti,TrinidadandTobagoandaTEDxTalkinAmman,Jordan.Nottoneglecthe’sgainedtwodegreeswhilebeingontheDean’slist,graduatedPhiThetaKappaHonors,wontheFloridaStatePALBoxingChampionship,isadevoutChristian,createdtheAIDSAwarenessPoetsIncandtheAIDSGames.Hewrotethreetopsellingrelationshipbooks,“HowGoodIsSex?”,“ChangeHim…In100pages,”,“LoveIsNotAnSTD”and10StepsToGetOverAnEx…FORGOOD”.Heisalsotheyoungest(27)AlumnioftheyearawardrecipientatPalmBeachStateCollegeforhisworkinHIV/AIDS.Yet,hishighestachievementsoccurredApril6th,2014bymarryinghisdreamwomanandMay26th2018whenhisdaughterNiyawasborn.

Heisproof,thatnomatterhowyourlifestarts,youcanchangethemiddleandaltertheending.Hisstoryhasinspiredmanyandcontinuestobeareasonwhysomebelievetheiryesterdaywon’tdictatetheirtomorrowbecausethey’vemadeadecisionto live right...today.

SPEAKER


PATRICIA SMITHPatriciaWilson-Smithisanauthor,technologyexecutive,educator,andthePresidentandCEOofOnlineMediaInteractive,LLC,alocaltechnologyconsultingfirmanddigitalmarketingagency,andhasover20yearsofexperienceindeliveringtechnologysolutionsforavarietyofindustries.SheearnedaBachelor’sinComputerInformationSystemsfromDeVryUniversity,andlateraMaster’sofInformationTechnologyfromSouthernPolytechnicStateUniversity,wheresheearneda4.0GPAandwashonoredas“OneofTheOutstandingWomenofSPSU”,and“GraduateStudentoftheYear”in2003.

Ms.Smithisalsoapoliticalactivistandradiotalkshowhost,whohasappearedonthenationallysyndicatedtelevisionshow,DemocracyNow!,asanOscarsred-carpetcorrespondentatthe2007AcademyAwards,andwhohaswrittenforcountlessnewsmediaoutlets,includingtheNewYorkTimes,theHuffingtonPost,andtheAtlantaJournalConstitution.AsExecutiveDirectorofBlackWomenforObama,Wilson-SmithblazedatrailinlocalandnationalpoliticsthatearnedheraseatontheNationalWomenforObamaLeadershipTeam,andaspotintheGeorgiaDNCDelegationin2008.AstheownerofOnlineMediaInteractive,Ms.Smithleadsateamofresourceswhoaredevelopingnewtechnologies,andhelpingcompaniesacrossthecountrybetterleveragetechnology to meet their business goals.

Technology Leadership : Entrepreneur, Technology Lecturer, and Trainer *PresidentandCEOofOnlineMediaInteractive—ADigitalMarketingandTechnologyConsultingFirm*Yearsofhands-onexperienceinfast-paced,high-pressuredteamproductionenvironmentsleadingdevelopers,projectmanagers,qualityassuranceresources,andbusinessanalystsinbuildingenterprisewebandothermission-criticalsystemsthatareresponsiblefornettingmillionsofdollarsinnewrevenue*Aprovenleaderandeffectivemotivator*Knownforconsistentlyhelpingcompanieswithcomplexbusinessandtechnologyenvironmentsbridgethegapbetweenbusinessgoalsandtechnology*ExpertinInternetandWeb2.0technologies*BachelorsinComputerInformationSystemsandaMaster’sinInformationTechnology(withanemphasisonInternettechnologies)* Adjunct Professor for Southern Polytechnic State University from 2003- 2007, delivering custom curriculumintheareasofDatabaseSystems,HardwareandSoftwareConcepts,WebDevelopment,TechnologyandSociety,ManagementandOrganizationalBehavior*ChartermemberandTechnologyDirectorfortheAtlantaChapteroftheNationalAssociationofFemaleExecutives

Politics and Activism Radio Host, Political Activist, Commentator *RegularGuestHostof“TheMorningShow”onWAOK1380AM,aCBSRadioStation*HostofPressPause:WAEC-AM,aweeklyradioshowcoveringnews,politics,andentertainment*Acommentatoron“DemocracyNow!”withAmyGoodmanduringthe2008ObamaCampaignrepresentingObamasupporters*Founderof“BlackWomenforObama”,formedin2007toprovideinformationandcoordinateresourcesaroundthecountry–raised$50,000asanorganizationforthe2008Obamacampaign*Memberofthe“WomenforObamaLeadershipCouncil”duringthe2008PresidentialCampaign*RecruitedbytheObamacampaigntoserveasDelegatefromGeorgia’sDistrict7in2008;atInvescoFieldin2008whenPresidentObamaacceptedthenomination*RecruitedbyAlJazeeraEnglishtoserveascommentatorinDenverduringacceptancespeech*Authorof“DupedByLove”;Screenwriterfortelevisionshowbasedonbook*Writing/interview/citationcreditsincludeopinionpiecesforHuffingtonPost,quotesonBET.com,intheWashingtonPost,interviewsinRollingOutMagazine,TheNewYorkTimes,AtlantaJournalConstitution,and a number of other media outlets

Women Empowerment/Life and Career Transition Author, Speaker, Lecturer *Developerofthe“F.A.C.E.YourFuturePowerConference”(2017),amulti-dayeventdesignedtohelpwomenwhoareincareerandlifetransitionadjusttotherealitiesoftheneweconomy,familyandpersonalchange,andtechnologyinnovation*Founderofthe“SugarSoldier”Movement–Pat’spersonalcrusadetoeducatethenationabouttheravagesofsugarandcarbohydratesAuthorof“DupedByLove”,thelaugh-out-loudnovelaboutdatingandfamilyrelationships

SPEAKER

SPEAKERCONT.


BROCHURE 2016 | COMPANY NAME| 31 30 | BROCHURE 2016 | COMPANY NAME 31 | BROCHURE 2016 | COMPANY NAME

SpeakersHollyJohn TaylorChambers ChandraWhite ChicSmith Tosin Ola Dan Moore Mark Diamond


ESTERPHINE GREENANewYorkStatelicensedclinicalsocialworkerwithaMastersofSocialWorkfromtheCityUniversityofNewYorkHunterCollegeandaBSWdegreeinSocialWelfarefromUniversityofBuffalonowSUNYatBuffalo;EsterphineGreenehaspracticedsocialworkintheStateofNewYorkformorethan40years.Shehasdemonstratedproficiencyinworkingwithadultindividuals,familiesandgroupswithinthementalhealthandsubstancespecificpopulations.Overtheyears,EsterphinehasprovidedvolunteerhourstocommunityagenciesandinstitutionsofhigherlearningthroughoutNewYorkState,whileservingasFieldInstructortosocialworkand nursing students.

Esterphineisknownasaskilledmentalhealthtreatmentspecialistandaprofessionalwhoreallycares.Colleaguesandstudentsalikehavedescribedherasanexcellentteacherwhosetsthebarhighandwillhelpyoutoachieve.TrainingsdevelopedandpresentedhaveincludedGroupProcess,AnOverview;ManagingDisorderedPersonalityinChurch;LeadershipinaMentalHealthResidence;Suicide-assessmentandintervention;MentalIllnessandtheBlackCommunity;andHamlinPark1950-21stCenturytonoteafew.Duringthe1990’sEsterphinerepresentedtheBuffaloPsychiatricCenterandGenevieveCollinswhileco-producingandhostingaweeklyradiobroadcast,MIND,BODYANDMENTALHEALTH,whichairedlivefor5yearsintheWesternNewYorkarea.

2008markedEsterphine’s27thyearintheemployofNYSOfficeofMentalHealth.2008isalsotheyearofherretirementorasEsterphinesaystheyearshe“stoppedreceivingpersonal,vacation,sickleaveandpaidholidays”.Duringthe15yearsimmediatelyprecedingretirementEsterphineservedthesevereandpersistentmentalhealthpopulationbasedinthecommunity,hostedbyBuffaloPsychiatricCenterandtheBuffaloFederationofNeighborhoodCenters,anot-for-profithostagency.SinceretirementEsterphinehastraveledtomanyplacesofinterest.OahucityofHonoluluisherfavoritelocation.Shesaysit’soneofthemostbeautifullocationsespeciallyatsunriseandsunsetonthebeach.Esterphinecontinuestoprovidevolunteerhoursinthecommunityasamentalhealthconsultant,stafftrainerandboardmember.Sheactivelyparticipatesinherchurch,attendingbiblestudy,isamemberofMissionandAWANAministries;aswellasconveningtheMemorialministry.Esterphinelovestosingandisatenorintheseniorchoir…butnosolos!

Since1989EsterphinehasresidedinHamlinParkahistoricresidentialneighborhoodthatistheonlypredominantlyAfricanAmericancommunityinBuffaloNewYorktobelistedontheNationalandStateHistoricregistries.Shehasremainedactiveintheresidentassociation,theHamlinParkCommunityandTaxpayersAssociation,Inc.servingtheorganizationassecretaryandDevelopmentChair.

LastlybutnotleastEsterphineGreeneisamemberoftheFaithMissionaryBaptistChurchwhereElderJamesR.Banks,IIisPastorandonlytheWordistaught.Proudly,Esterphinesayssheisamotherandgrandmother,sisterand friend in the best family God has put together. Esterphine believes, undoubtedly parenthood is her greatest accomplishmentforitisthelegacyoffamilythatwillremainlongafterhertransition.Esterphinesaysthisistheseasonofherlife’snewestchapterand…Lifeisgood!

SPEAKER

| 33

PARTNERS & ORGANIZATIONS

CBOs (continued)SickleCellAssociationofHouston RaineLove [email protected] Tonya Prince [email protected] LockhartMorganFoundation GwenMorgan [email protected],Inc.(A.S.A.P) KeembaGosier [email protected] OlaOgundemi [email protected] TahirahAustin [email protected] LisaMeatchem [email protected] NeDinaBrocks-Caplacrisis@scaasf.orgHeartofGoldSickleCellFoundationofNorthernVirgina Melanie Hurley melanie.hurley@heartofgold.orgTheMartinCenterSickleCellInitiative GaryGibson [email protected] Cell Services Albertha H. Cook [email protected]

Independent/ Caregivers Kay-DieneRobinson [email protected] [email protected] Richard [email protected] [email protected] Guobodia [email protected] NicoleSurjit [email protected] [email protected] Peterson [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] Cyprien [email protected] Boaz [email protected] [email protected] [email protected] Hernandez [email protected] [email protected] [email protected]



Junior CBOsNoPaininthePlayroom OmekaEdwards [email protected] GeorgeneGlass [email protected] ClaytonAndrews [email protected] ShamirJubert [email protected] Red Chair Project Sharonda Hudson [email protected]

CBOsHope for SCD Lisa Rose [email protected] VanessaRhodes [email protected]’sPromise KenyaBuckley [email protected] *D’AngelaSttaford [email protected] *Renata Liggins [email protected] SickleCellFoundationofMinnesota RaeBlaylark [email protected]

SickleCellDiseaseAssoicationofAmerica,MichiganChapter WandaShurney [email protected]

KidsConqueringSickleCellDisease CarlaLewis [email protected] DominiqueFriend [email protected] *InhuaMuijrers-Chen *Tynisha Hall SickleCellWarriors,Inc. TosinOla [email protected] TiffanyWalsh [email protected] Axis Advocacy for Sickle Cell Disease Adrienne Shapiro [email protected] Marissa CorsSupportersofFamilieswithSickleCellDisease VelvetBrown-Watts [email protected]&ChildrenFoundation CarolynRowley [email protected] JeanWalrond jean.walrond@ualberta.caInternationalAssociationofSickleCellNursesAndProfessionalAssociation Yvonne Carroll [email protected] Pat Corley [email protected] BoldLipsforSickleCell ShamonicaWiggins [email protected] JewelDarbone [email protected] ParnelAbraham [email protected] TomiaAustin [email protected] MarieOjiambo sicklestronginitiative.kenya@gmail.comSickleCellFoundationofTennessee AlexisGordon [email protected] Tabatha MarmonTheSickleCellAssociationofTexas,MarcThomasFoundation LindaWade [email protected] Alysian Thomas



Independent/ CaregiversLewisPerry [email protected] [email protected] [email protected] Cummings [email protected] [email protected] [email protected] Young [email protected] [email protected] Davis [email protected] Rose [email protected] DominiqueGoodson [email protected] [email protected] Riley [email protected] [email protected] Agyepong [email protected]@gmail.comNekiaRitchie [email protected] [email protected] Curry [email protected] Mays [email protected] [email protected] Cobb [email protected] [email protected] [email protected] [email protected] [email protected] Thomas [email protected] [email protected] [email protected] [email protected] Braxton [email protected] Rogers [email protected] Harris [email protected] [email protected] Mitchell [email protected](e.Smalls)Moore [email protected]


Tiusporemadutdiateturautedolupisiquuntavercimotemiursitiofficietprepudi doluptatur, soluptatius, consecus nime porecte veriaerit laborumeomnis simusqui acepeet.Tius poremadut diat etur autedolupisi quunt avercimotemiursitiofficiet.

TITLE GOES HERE TITLE GOES HERE TITLE GOES HERE



610 DESIGNS & COMPANY

Location:OfficeCountryNameBoldSentenceapplications toprotect technologyand improvements thatweconsiderimportant to the development of our business.Wehave generated a large number ofpatents,andexpectthisportfoliotocontinuetogrowasweactivelypursueadditional.

Location:OfficeCountryName30,400activepatentsandpendingpatentapplicationsglobally,withanaverageageforpatentsinouractivepatentportfolioofjustunderfiveandahalfyears.Inadditiontothisintellectualproperty,Locationweconsiderimportant.

Jazmine Rivera


Our Warriors Won WWW.SICKLECELLCONSORTIUM.ORG | 2019

Forever In Our HeartsLove,

SC3, Family, & Friends

Jontrece Nobles Diamond Edmundson

“Ourmissionistoprovidethehighestlevelofprofessionalgraphicanddesignservicestoourclientsworldwide”

The people we love BECOME A PART OF WHO WE AREAnd when they leave this world, a part of them stays with us always.

We are creating a Warrior Memory-book in honor of each one of these amazing partners. You are welcome to send pictures, notes, poems, or anything from the heart

to be added to the book.

We will create a separate book for each of the 3 families containing the pages about their warrior.

[email protected]

525 Tribble Gap Road, Box 1195Cumming, GA 30040

TEL. 706-619-6029FAX. 706-619-6029

www.sicklecellconsortium.org

CONNECTWITH US

U N I T Y - C O M M I T M E N T - P R O G R E S S

SC3SICKEL CELL COMMUNITY CONSORTIUM

4th annual - sickle cell consortium...leadership summit & general assembly of patients,...

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