2019 ANNUAL REPORT - FPA

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2019 ANNUAL REPOR TFA C E O F H O P E#faceofhope30

WELCOMEDear Friends,2019 was a transitional year forThe Facial Pain Association. JeffBodington turned over the reinsas Chairman of the Board toDavid Meyers, John Koff retiredafter 15 years as CEO, and I tookhis place in November.We held our 11th NationalConference on November2nd and 3rd at the University of San Diego Schoolof Medicine, which was sponsored by the UCSDDepartment of Neurosurgery. Several hundred peopleaffected by facial pain listened to speakers andparticipated in discussions about a variety of relevanttopics, had time to speak with doctors and enjoyednetworking time with others. Several members of theFPA Medical Advisory Board also traveled to San Diegoto present on topics including diagnosis, treatment,medication and therapies.2019 also marked a growth in the FPA Facebookcommunity – our closed group, the Official TrigeminalNeuralgia Network, includes more than 15,000 memberswho can share their experiences, ask questions, supportothers as they experience new challenges and cheertheir successes.More than 6,000 people seeking information about theircondition contacted FPA in 2019. We provided themwith a free Patient Guide and connected them to manyresources and support. Our educational webinar seriesalso continued to be a popular program in 2019.2020 marks the 30th Anniversary of our organization.Claire Patterson, the founder of what was originally theTrigeminal Neuralgia Association, graced us with herpresence at the San Diego conference and expressed herenthusiasm for our plans to expand our Support Groupprogram and engage new healthcare providers.The Board of Directors has embarked on a strategicplanning process. This work will serve as the roadmapto improve and thoughtfully grow the programs andservices that are most important to the facial paincommunity. In addition, the support of our board ofdirectors, medical advisory board, donors and sponsorswill help us to grow in 2020. We are grateful to thesededicated volunteers and professionals who ensure wemeet our mission of support, education and advocacyto people suffering with facial pain and their loved onesaround the globe.The FPA Young Patients Committee is a passionate groupof people under age 40 affected by facial pain. Their TNAwareness Day video, #ChooseToSmile had 2,600 viewsand, across all four social media platforms, the group has3,000 followers. The committee was able to sponsor nineyoung individuals with facial pain to attend the nationalconference and began a junior ambassador program.FPA is incredibly grateful for our wonderful volunteersas we look to 2020 and beyond, we plan to grow oursupport group program, provide ongoing education andtraining for volunteers, and support their efforts to helppatients and caregivers in their communities.On this 30th anniversary of FPA, we recommit ourselvesto serving every person affected by neuropathic facialpain, becoming more responsive, offering new ways toconnect and bringing more programs to you. Thank youto all those who support this wonderful organization andensure we will be able to continue to help those who sodesperately need it.Allison Feldman, CEOWHO ARE WE?The Facial Pain Association (FPA), a non-profit, 501(c)(3) volunteer organization, was founded in 1990 by a team ofpeople who were profoundly grateful for recovery from years of disabling trigeminal neuralgia pain. The organizationnow assists thousands of others around the world. FPA has emerged as the world’s leading resource for informationand health care guidance for all people suffering from neuropathic facial pain. Both patients and healthcare professionals benefit from its programs of education, personal support, and advocacy. The Association is governed by aChief Executive Officer and a Board of Directors.OUR MISSIONTo serve those with neuropathic facial pain, including trigeminal neuralgia, through support, education, and advocacy.

LEADERSHIPMedical Advisory BoardBoard of DirectorsJeffrey A. Brown, MDNational Chairman, MABNeurosurgery Director, Cyberknife ProgramWinthrop University HospitalDavid MeyersChairmanJohn TempleVice ChairmanMichael Lim, MDAsst. Professor, Neurological SurgeryJohns Hopkins Univ. School of Medicine David A. Sirois, DMD, PhDDental Chairman, MABAssociate Professor, NYU College of DentistryAnne B. CiemneckiSecretaryDonald Nixdorf, DDS, MSDirector TMD & Orofacial PainUniversity of MinnesotaJohn M. Tew, Jr., MDMidwest Director, MABClinical DirectorUniv. of Cincinnati Neuroscience InstituteMelissa AnchanJulie Pilitsis, MD, PhDAlbany Medical CenterMark E. Linskey, MDWestern Director, MABAssociate Professor of Neurological SurgeryUniversity of California, IrvineRamesh P. Babu, MDJeff BodingtonRaymond F. Sekula, Jr., MDAssistant Professor of Neurological SurgeryUniversity of Pittsburgh Medical CenterJohn F. Alksne, MDProfessor of NeurosurgeryUC San DiegoKonstantin V. Slavin, MDProfessor, NeurosurgeryUniversity of Illinois College of MedicineJeffrey Fogel, MDNicholas M. Barbaro, MDMalva Clinic for the NeurosciencesUT Health AustinHenry A. Gremillion, DDSGary L. Stanton, MDEmerson HospitalBoard Certified in Neurology and PainManagementKenneth F. Casey, MDChief of NeurosurgeryOakwood Southshore HospitalMegan HamiltonAlly KubikHarry Van Loveren, MDProfessor of NeurosurgeryUniversity of South Florida HealthSteven D. Chang, MDStanford University School of MedicineNeurosciences ProfessorRichard S. Zimmerman, MDProfessor of NeurosurgeryMayo Clinic, Scottsdale, AZEric WertheimGary D. Klasser, DMDAssociate Professor, Diagnostic SciencesLSUHSC School of DentistryFPA StaffAllison FeldmanChief Executive OfficerMitzi KorbAdministrative AssistantNancy OscarsonBusiness ManagerCindy EzelPatient ServicesCoordinatorAmy TurnerDevelopment DirectorPam NeffPatient Support VolunteerThe Young Patients Committeeis comprised of TN patients, ranging in age from 18-39 from across the United States.Stephanie Blough,PresidentKenzie WinslowEllie Eichenlaub—1—Rachel TriayNot pictured,YPC JuniorAmbassadors:Mollie DyerElaina Jackson2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

NUMBERS2019Thank you for helping to further the mission of the FPA in 2019facebook.com/facialpainassociationPrivate group:twitter.com/facialpainassoc3,500 followers60,000 impressions2,000 profile visits10,000 likes15,000 members50,000 posts/comments/reactionsJournal of The Facial Pain AssociationWinter 2020150 national400 webinar20,000 mailed120,000 emailedand internationalpersonal supportresourcesregistrants persessionThe Facial Pain Association22 SE Fifth Avenue, Suite DGainesville, FL 32601Caroline Helwick’s Take Home Messagesfrom the 11th FPA National Conference Page 11FPAPatientGuide6,000 downloaded225 National360,0001,200 activeConference attendeesFPA individualmembers*website visitsYoung Patients CommitteeOVER 3,000 SOCIAL MEDIA FOLLOWERS@youngpatients@ tnaypc*A member is anyone who donated 50 or more in 2019—2—@tnypc@YPCtna

FINANCIALSAs of December 31, 20192019 Programs & Support ServicesEducational Materials10%28%Website11%Social MediaQuarterly Journal22%12%17%Telephone SupportConferences2019 Sources of RevenueUse of Funds2% Sponsorships3% Sale of Materials11% Conference Fees8% SupportingServices71%Donations13% Fundraising79% Patient Programs13% Professional Memberships—3—2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

DONOR LEVELSWe gratefully recognize all donors who have signedup to become FPA monthly donors, having fundsdirectly charged to their credit card or withdrawnfrom their bank account automatically each month.These donations provide a reliable source of fundingthat allows us to sustain the initiatives of the FacialPain Association while spending fewer resources onfundraising.As we celebrate the 30th Anniversary of ourfounding, the FPA hopes to continue providingsupport, education and advocacy to those whoneed it for another 30 years. You can help securethis future by choosing to include the Facial PainAssociation in your estate plan.By including us in your will or living trust, namingus as a beneficiary under an individual retirementaccount or otherwise including us in your estateplan, you will secure the future of the FPA missionand forever be remembered as a member of ourLegacy Society.We welcome our current monthly donors, listedbelow, into the newly established Sustainer Circle.Douglas CaldwellKelly & Robert CampAnne & Stephen FlemingLorri GenackFrank MorenoLynn WendellPlease contact us for further details.ANNUAL DONORIndividual Membership Program Recognition LevelsChairman’s Club( 15,000 )Platinum Supporter( 5,000 to 14,999)Gold Supporter( 2,000 to 4,999)Silver Supporter( 500 to 1,999)Patron( 100 to 499)Friend( 50 to 99)—4—

DONORSWith great appreciation werecognize the following2019 DonorsChairman’s ClubJeffrey BodingtonDavid MeyersRoger and Madeline LevyPlatinumGoldGwen M. AsplundhRamesh P. Babu, MDArlene ChernerAnne B. CiemneckiElizabeth S. HoffmanPatrick and Betsie O’BrienJean C. RaymondRoberta (Bobbe) RowanJohn TempleClaude AldridgeMelissa AnchanSteven D. Chang, MDFayne M. DanielsRichard FredaMegan HamiltonPaula and George MooreRobert MorsekPam NeffRichard S. Zimmerman, MDSilverAnonymousRobert EtheridgeRichard MarschnerDenise RamzyDale & Mike BukatyCliff FleenorAshley & Peter MartinCheryl RappBurt FamilyTreana HansenPaula RosenfeldNell & Truman ChannellRohn W. HarmerMichael Marvin &Linda Dahlin-MarvinPamela Clifford, RNMarianne Hart &Elizabeth A RogersMaryLee & Jay MatternJanet McConnellSarah D. SawyerCharles HesterArt R. McHaffieChun Wah HuiPortia & Steve McLeodJanet E. KingMaureen MeyersDana & Peter LangermanPatrick MuriJoseph LeonardDoris & Jerome NewmanMark E. Linskey, MDClaire W. PattersonReba LittleLinda PerdueJohn L. MacKenzieJohn M. PreisJohn Coates, Jr.Nyda ConcialdiSarah & John ConwayKathy CurranSuzanne C. CzachowskiVictor Del FaveroJanet DitslearGlenn DredgerK. Singh Sahni, MD, FACSKatherine W. StevensCheryl StibelPatricia & Michael SublettLynn WendellEric WertheimChristy & Glenn WestCynthia WoodsPatronsPatricia & Francis AbadieMary & John AlbrechtJoseph E. ApicellaJanet AzevedoStacie AbrahamDomingo AlgorriMarianne ArditoHelen BabyakLeonard AbramsTeresa AllredJohn ArmstrongSylvia BaconAdele F. AbramsonWayne J. AndersonIda R. AshbyThomas BaileyJanice R AdamsTracy AngoldRosemary & John AshbyTeresa BantyBetsy & Jay AikensDiane AntonetteKirsten Austin—Continued on page 6——5—2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

DONORS cont.Marian BarJoan E. CannelliDale CrawfordShera M. FarnhamAndrea GlennNellie BargLonnie CaponJoyce DadoucheMarsha FennimoreSheila & Harris GloePatty & Joseph BarnesJean & James CardDorinda D. D’AgostinoThomas FenstermacherPam & Larry GoehringJeanne BatesSuzanne Carleton, FNP-CGregory DantioCarol & Edward FentonSarah GoldbergKrista BattrickBess CarlsonRobert A. DeaneLoran FilsonBernietta GrafWilliam L. BaySusan CavanaughHarold L. DeVriesMary FitzgeraldGloria & Dick GraferCandace & Wayne BeachSusan J. CerriJames DillonAnne & Stephen FlemingCyndy & Tim GrahamNancy BeanJeanie & BrianChamberlainJoseph C. DobesBarbara FloThomas GraneyGeorgi ChantJeffrey DobrinskyGail FlynnCarol A. GrangerJessica DohertyPatricia FogginKay E. GrimBenjamin DolanGretchen &Robert FrancisRobert GrimJill FredriksonStacy GrossmanSuzanne BeardBurton BeckerNancy & Robin BeckerJudy BedfordCarol BenderZelda BensonCarol & Denis BerardiSidney M. BermanD. E. BillingsleyKristie BissenHelen BodingtonLois A. BonifantTatiana & Joe ChristianCharlene ChurchillSteve CiccoErin CiminoJonathan S. Citow, MDDolores CiuffoMarlene & MelindaClevengerLulla M. ClumVirginia CoburnJulie BorschkeBetty Jane (BJ) &Thomas CoghanEmily BradleyJudith CohenRebecca B. BrandMichael CohenCarolyn & Fabrice BraunrotWendy CohenRobert M. BrennerMarilyn CollomKerry BroughSally & Kent CooperJudy BrownKathy CopeLinda & Ken BurnhamTeresa CordonnierMary & Jim ButcherChris CouchBarbara D. ButlerTracey Lynn CoxMartha & Ronald CaldwellRoy CraneJoyce DominickSusan M. DoranMary & George DownsMary DraegerStephanie DukeLaura A. DulskiNicolae DumitrescuGeraldine (Gerri) &Michael DunnePatricia L. DuweSusan DykesDaniel EachusPhilip EinhornDeborah EllisMarion EllisChikezie Eseonu, MDCynthia & Wayne EzellPeter M. FallonMary FambroughPaulson Family—6—Louise (Kim) & RichardFreedmanAnn FreemanWilliam C. FreemanAnne & Natalio FridmanTammie FrischeNancy FuchsJanet FuquaDeborah GalaskaFreddy GandhiJudith M Gardner, PhDStuart GauseLorri GenackLyn GentryIlene Gerber, PhDMary Jane GetlingerLinda GiacopelliPat GiannaccoGina GlazeTina J. GrimmTim GuithLinda & Paul GysenMary & Scott HallKenneth HandelCheryl HandrenJohn HannonRobert HarlowEugenia T. HarringtonSandra HartmanTamara HaskinElizabeth J. HaslettDavid B. HawkinsJennifer HayesRichard HaynesJohn Hazel, JrJerry HeffernanBetty Ann HeldAlan S. Hendry

DONORS cont.Laraine HenleySue KaufmanJudy LamontMary E. MattioniMeredith HersheyKim KeeNathalie LamoureuxRaymond McCordMorris Hickman, Jr.Valarie KeefeMarilyn LanctotWilliam McGeeBarry HicksJanice H. KelleySally A. LapidussGraham McGivernJoyce E. HierScott KelleyRich & Ginny LargentRoy S. McKay, Jr.Mary HilgertDorothy L. KelliherAnne LastimadoMark R. McLaughlin, MDRobert W. HirschAimee & John KerkemeyerWinifred K. LattnerPaul McMahonDouglas HoldenConrad KerwathMargaret LebbyMs. Nancy McMorrisPatricia HoverstenJudy & John KeysAnne LeberTeresa MeredithLoren HowellHoward KiedaischJennifer LefkovitzDenise & David MeyerDavid HuangRoger KingWilliam LehmanFaye MeyerTracey & Joe HueglerAngela KipperAlice LeoneJane MeyerWarren W. Huss, DDSCarol KirkbrideLauren Levi, DMDDonna & Stephen MichaelAnne IezziFaith & Donald KleinDonna LibalCraig MillerLinda IhdeJeri KleinJudy Licata & Marvin HermanJames MooreRosana IoccaBarry KleinmanKathryn LindahlIris MoralesJane A. IrvingJosephine KnightRoberta LipseyDebra MorrisonAlice IsaacmanPatricia C. Knight, RNDeborah LockwoodMaureen E. MuckHella IttenbachBarbara Ambrosia KnutsonGeorgia Loescher-JungeSylvia A. MullanGail P. IveyHeidi KoppJane & Charles LoganLee MulliganVen IyerSusan KosekLynn LucasJulie MurphyRobert JansenHarriet D. KrugelJean J. LumpkinPamela MurphyNina & Harold JohnsonAlly KubikCarolyn LynamBarbara MurrayDonnell & Robert JohnsonAnnette & Edward KubinecThomas LyonsDoug MusickJana JonasSherry & John KulifaySteven MaassThomas MusickRobert J Joos, JrHarriet & Jim KulisLeo MacInnisRobert MusserWayel Kaakaji, MDNisha KulkarniRichard MaggioMarcia NagelSusan KaesemeyerStanley D. Kushel & Catherine AksAudrey MartinuzziSujata NegiCristina KantzMichael KuzianJean & Josiah MasonWarren NesbittSteven KaplanKathy LaForestLinda & Arthur MatsonRosalind & Richard KaufmanCarlin LagruttaSusan Matte-Farina—7——Continued on page 8—2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

DONORS cont.Deborah NewtonBahareh Safaie, DDSConnie ThomasJill A. NicholsDoreen & Jeff SaltzmanGeorgia H. ThomasMurray NicolsonSatori Capital, LLCMichael A. Tighe, Jr.Marilyn NiemiElza SatterfieldAlex James TitusSandra NietfeldJoseph P. ScheuchenzuberAnn H. TooleAlice P. NorrisElaine SchneiderIsidro TrevinoCynthia L. OkesonKaren SchroederCarol A. TrombleyJanet L. O’NeilSherry SchroederCarrie TurcoLaura Oren & Bruce PalmerAnn & Arthur SchwartzThomas UretskyRobyn OrloffShirlene SearsVersha VanganiMarge & Larry OslundBrenda SharpSue VincentJane & Larry OverstreetMarcia SheeseLouis R. Vita, DDSBarbara & Tony PaolozziAnne T SherrenRuth A. WackerDenise ParisJames SherryTom WagnerKaren ParisSara SimoneCandace WalkupMaureen PartynskiJudith A. SimpsonJeff WaltersEsther & John PasalisPhilip SineLun WangBabagaunda PatilJulie SjaardaAlicia & Matt WardJacqui PeaceSunny SjaardaDonna WardPatricia & Duane PellervoKaren SmirlMary Lou WatsonAndrew PensavalleJosephine SmithJane WengerAndy PetitjeanJoy Beales SmithBryant WhittakerEileen & John PhillipsLinda SmithSharon WindwerSerge M. PintoLisa & Paul SmithFloyd Winslow, JrDaniel PonceRobyn Soerrries-FunkAmy WolffJeanette PraetoriusStephanie SorensenAimee WoodCarolyn & Larry PresgraveGayle SpringerLinda & John WrightVictoria PrevattAnne & Lynn SpykerLorraine WulfeGuy PriceMarti SquyresAudrey A. YostWanda ProctorLoretta StaceyRobert YoungMary Jane PychMary StanleyKaren & Henry ZentgrafDorothy Rainwater, RNJoyce SteadhamMichelle ZiembaLeonard S. RamroopMichael N. StirlingSuzanne ZimmermanSusan & Ralph RaphaelsonCita StraussMarc ZuckermanElizabeth & David RaspElayne StudenbergSteve L. RedwineAlan StumbaughJay ReederEllen SullivanLynn ReinerSean SullivanDonald RembertSuzanne Sutphin-RolandSue RemmeyBeverly SutterfieldElaine & Wayne RetzlaffKim SvobodaRockingham InsuranceSusan SwansonNorah RodgersRonald M. SwartzCarole Diane RoeStanley SweitzerMary & Don RogersCharles A. TaylorRisa RoseLee TaylorAlison RosenbergLeVonne TaylorCyrilla & Herbert RoyceTerry Taylor-AllenAaron RunningJean & Mark TeelNorma J. Sacca-AntonakosPatricia ThayerFriendsLollie AbramsonCarmine & Dick AdamcinCynthia AlexanderEmily AmesPhyllis AndersenCandace AndersonLisa AndersonMary AndersonMelanie AndersonNicholas ApplinDelia A. AtkinsonNancy AttiaRebecca AuAlbert AusterJoyce BairdBev Baker—8—Ruth M. BanciuFaye BandowDavid BanksRobert BarnesNatalie BarnettMartin BaronJulie BarrazaTeri L. BarrettMary BarrowsJane L. BartterNorma J. BasnerCharles BeaudoinBruce BegoleCindy BennettPerry BergmanJoylynn BerschauerMartha BertrandAnthony J. BilanginoKristine BisanzJim BlackWarren BluesteinJanet BoggessSamuel BowserJohn BratschJason BrittinghamElda & Mario BrontoliCarla BrownWendy BrownNancy BruderSusan BrunerRegina BruskyEugene F. BryanSherry BuhlerJennifer BurnsHelen L. BurrowsVincent Butera, MDLinda ButterworthSue A. ByczynskiJudith E. ByersDaniel CaineChristine CalabreseJoseph CaliniDiane & Steve CalkinsEd CanlasBess CarlsonJoanne & James CarterJudith CarusoNancy P. CastellanoAlan CavinZack CiampaBrian CiemneckiDavid CiemneckiLorraine ClarkUna ClausenDavid W. ClaytonBill CliffordRoberta J. CollinsKathleen Collins-RubyCarol CornellLauren & Marshall CorsonBarb Venable CottonTheresa Cottrell

DONORS cont.Bronwyn & John CowellCatherine CoxColin Cox & Nancy WindleKim CravensDonald H. CriswellMary Lynne CuervoMichael CullersStephan DanckersBarbara DanielsDarlene DanielsJames P DanielsonFaun DansonDenise DarlingNancy L. DarrahCharlette R de HaasJack DemuthConstance & Thomas DesjardinsJulia A. DiazHelen DickeyRebecca DickinsonVirginia DickinsonGregory DiehlDavid DinglerKerry DinneenMichael DircksenMary Kim DollardJohn DoughertyMaura DoyleKathryn DrentlawSvitlana & John DrougasJerry Drummond, MDBarbara DugganDona DurhamDonald EberhartMary E. EchelbergerBetty S. EckbergChris EdwardsonArthur M. Emery, IIIMary & Stephen EmmertAllan EnisLori EnochianThomas EspinedaCarol EvansLinda E. EvansTom M. EvertBarbara FarmerDebra FarreauWilliam FenstermakerJanna FergusonJan FernandesDiana FerrisMary Kate FischerRichard FishmanSandra FletcherMeg FloydCheryl FlynnDouglas FoleyJoyce ForckeColleen FosterDeanna & Richard FowlksBetsie FrankGertrude FrankelGrace FredricksonClara FreemanKathleen FrewJanet GabrielMatthew GaffneyCindi GallagherCynthia GanobsikMarianne & Joe GarnerDaniel GastineauBrian GaulPaul GeisheckerLorri GenackMandi Ginn-FranzTom GirgashLorraine GladstoneMary GoelzAnne GoetzmanIsabel GoldBarbara GonsalvesCarol & Stan GordonLinda GornyKaren Gradel-KlosMary Jo GriffinRobyn GrilloLisa GrillsMarlene GrimesRita & David GrossCatherine Gross-ColtenFrancis GuerinRoger S GuernseyVickie & Joseph GuiteJune M. HaberbuschMary L. HackerCliff HackneyEstelle HaferlingMichael HaganLynne HalesDavid HallowesMichael HannemannMargaret & Donald HansenHeidi HarmonFrederick HarthenJohn HartiganAmy HartmanDoris HartsRoxann HauptSarah HawbeckerStephanie & Richard HawleyBrian HeardAnn HendricksMargaret HennesseyTiana HenryTherese M. HercherMaria HernandezHelene HershmanRobert S. HeymanGermaine HillmerKathy HiltonPatricia A. HoelleDiane HoffmanLinda R. HokitFloyd HollidayKathryn HoneycuttMarcia Horan—9—Patricia H. HoranHelene & Carl HortonPatricia HoverstenKaren HoweZach HustonJoe M. HutchingsStephen IacovinoJean IshizukaMary G. JacksonBradley JacobsonVicki JankowskiPatrick JanneyKarin JawitzMary Kate JensenW. Paul JonesElena JoosWolfgang JuekoffScott KalkinJanet C. KamerosCaroline KaneMichael KarasMarleen KarnsDarlene KastenJeff KaszermanR. A. KatherMarie KeeleyMary KellerMyla & Daniel KelleyMary Ann KellyAudrey KerswellChandra KhodaElaine KicklighterEdmond F. KielyMary KindredJulie KitzeBeth KleedermanFaith & Donald KleinSue KnirschDonna KohleyJane Kondon—Continued on page 10—2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

DONORS cont.Kenneth KoraneMelissa KossLeigh Kotkov, PhDMarkos KountouroudasZofia E. KozakTina KrasnanskyDorothy KresconkoSharon Krevor-WeisbaumHarold WeisbaumCarol KroslowKenneth LangeMichael J. LangellaPauline P. LarkinBarry M. LasnerNancy LatimerBruce LauderdaleMary LautnerCora M LeachSara Jane LeeGenevieve LendaCarol LewinLi-lanCarole L. LiljaCathy LincolnLoretta LockettLeslie LondonLaurance LongtinJay LorchChristine LoughranJames LoundsDennis LynchElizabeth & Robert LyonSteven MacMullinAnna MalinskyJeff ManciniElisa T ManteyPatricia L. MarcoJoan & Bill MarcyMona W. MarpleJohn MarshallTheresa M. MarstonAimee MartinLinnea MartinSelma MartinGail G. MayhueCavill MazeKaren McCallCatherine McCarthyGreg McCawleyJean & Steve McClainLeonora D. McClernanJanice & Paul McConahyDiane & Ron McDonaldKara McDowellWilliam S. McDowell, Jr.Ginny McGargillGeorge McGeorgeDale H. McKinneyBrian MedeirosKathleen MendesAntoinette MercurioPaul MeyersEli MiletichSal MilitoPamela MillerPeter A. MillerBonnie I. MillsRonald MilneBeth MiltonCorinne & Tim MinerFelix MintskovskyMichael MollerMichael MollicaAnne MooreCarla MorganGretchen MorganBecky MorganeggElizabeth A. MorrisAileen MorseMichel Mouravieff , DMDNancy MuhsBeth & John MunzerSally MurphyRobert MurrayAnand NarayananEllen NashJosephine NegronM. Francis NevilleEllen NewmanDeborah NewtonHelen J. NicholsonMaureen NieseDiane & Bruce NoriegaJerry NormanJean NyeChristy O’BrienNancy J. O’FlinnPhyllis Z. OgofLarry OliverShirley OlsenYvonne OmerMaureen E. O’ReillyGlorianna OteroElissa Y. OuyangNatalie OwcharukTrish ParkerMarcia PaulyDonna PelczarskiPamela PelleDiane PendletonKoriLynn PerdueMitra PerelJill PereraDonna PerryRosemary PeterPaul PetraliaJoan M. PiaseckiBonnie PierceRobin PierceMary PingelMaria PinzonJoann PoindexterLinda & Ernie PolandJohn C. PorterPam PorterBrian B. PorterfieldEleanor K. PourronJunko & Gary PrenticeRebecca ProctorMatthew PulsRuth PurchaseLinda RaabBonnie & Donald RamseyJody RandolphAnthony RapacchiaLaurie RauchEileen Wellbrock ReedSusan ReedKenneth ReppleSusan ReynoldsJanine RichCarol & David RichardsPatricia C. RigginsValerie RingelBeth RoeselerEmery RogersHarold RogersMary & Don RogersMerle E. RoggyRoberta (Bobbi) RzepkaYolanda SandovalRobyn SantanaMarlene K. SaundersSusan SazerJudith SchieberlPatricia SchmidValerie SchmiederBrenda & Kevin SchroederPearl SchulsonM. Joanne SchwebachRuth ScottMary Ann SgarlataJoe ShaferJerry R. ShainVirginia ShannonKathryn ShaveHelen Shepherd, RNJack ShultzMichelle SiaoRosalyn SilbersteinJoan & Charles SimonsVickie SjaardaRebecca SmallElizabeth SmithM. Louis SmithRita Doyle SmithSally SmithersJerry SpencerHoward SpurlockIrene & William StarrPauline StephensClark P. StevensLyle StewartEllie StoneMelinda W. StrockMaryalice & Dennis StuitJoyce A. SullivanJennifer SusskindCindy SwanAlexandria SzemanFrank SzocsFrank SzocsPamela & W. Michael TannyhillMariday TarucJudy TaylorTara TaylorJessica TchappatPat & Dick TedfordWilliam TempleAlice TheobaldShirley ThomasCarol ThompsonDillard ThompsonValerie TinayMargaret TononPatricia TravigliaRobin TrennerNancy TrentNancy B. TuckerDonald F. TuffnerJoyce TylerJerald UdinskySusan UlmerCynthia Van De BrakeDebbie VanderhammenValerie VisnageBeth VogelDavid VoracekAnn VoynowDale WagmanRebecca WagnerAntony WalkerCathy WaltersMary WaltuckRobert WassallLindsay WeismillerCarol WelchRita WelzNancy WestlakeDelores G. WilliamsJennifer WilsonScott WilsonAmy WinterscheidtJoyce WisemanJanice WitkowskiKarin M. WoesteSondee WolffDave WoodringMary WoodsonLisa WrightMichael WynLaura YamaguchiLinda YamamuraLynn YesserFoo Lee YoongLorraine ZambernardiRobert ZawackiMartin ZeinerThose who became new or renewed members in 2019 have been incorporated into the appropriate giving level— 10 —

SIGNATURE PROFESSIONAL MEMBERS 2019AdventHealth Neuroscience InstituteChristopher Baker, MDDonald Behrmann, MD, PhDMelvin Field, MDRavi Gandhi, MDDavid Rosen, MDBoston Gamma Knife Center at TuftsMedical CenterJulian Wu, MD, FACSHoag HospitalChristopher Duma, MDAli Makki, MDNew Jersey Neuroscience Institute-JFKMedical CenterJoseph C. Landolfi, DOMayfield Brain & SpineSteven C. Bailey, MDVincent A.DiNapoli, MD, PhDYair M. Gozal, MD, PhDGeorge T. Mandybur, MDRonald T. Warnick, MDMayo ClinicJohn L.D. Atkinson, MDBernard R. Bendok, MDWilliam P. Chesire, MDChandan Krishna, MDMichael J. Link, MDFredric B. Meyer, MDBruce E. Pollock, MDRonald Reimer, MDRobert E. Wharen, MDRichard S. Zimmerman, MDNorthwell HealthMitchell Edward Levine, MDAmir Reza Dehdashti, MDRobert Gawley Kerr, MD, PhDMark Bruce Eisenberg, MDMichael Schulder, MDDavid B. Weintraub, MDRobert R. Smith, MDGamma Knife CenterE. Thomas Cullom III, MDHoward Holaday, MDJames Robert House, MDAdam Lewis, MDSteven Zachow, MDRocky Mountain GK Center, LLCRobert E. Breeze, MDJ. Adair Prall, MDSeattle Neuroscience InstituteDavid W. Newell, MDSouth Sound Gamma KnifeNathan Bittner, MDMarc Goldman, MDRyan Halpin, MDAnthony Harris, MD, PhDBarbara Lazio, MDMichael McDonough, MDHuong T. Pham, MDRandy Sorum, MDHerbert Wang, MD— 11 —Springfield Neurologicaland Spine InstituteHerbert Mark Crabtree, MDEdwin J. Cunningham, MDTed A. Lennard, MDJ. Charles Mace, MDChad Jason Morgan, MDSalim Raham, MDRobert D. Strang, MDJeffrey L. Woodward, MDMichael J. Workman, MDUniversity of VA/GK CenterJason Sheehan, MD, PhDZhiyuan Xu, MDThe Valley HospitalWilliam Cobb, MDAnthony D’Ambrosio, MDChad DeYoung, MDThomas Kole, MDMichael F. Wesson, MDUniversity of California, IrvineMark E. Linskey, MD2019 FACIAL PAIN ASSOCIATION ANNUAL REPORT

PROFESSIONAL MEMBERS 2019Douglas E. Anderson, MDDavid Estin, MDShamin Masrour, D.O.Alan Appley, MDMelvin Field, MDMark R. McLaughlin, MDLarry S. Arbeitman, D.C.Brian D. Fuselier, DDSVivek A. Mehta, MDGarni Barkhoudarian, MDSteven L. Giannotta, MDRobert A. Mericle, MDSamuel L. Barnett, MDJordan C. Grabel, MDYaron A. Moshel, MD, PhDGeorge K. Bovis, MDThomas W. Grahm, MDStephen Nalbach, MDMichael Brisman, MDAndrew W. Grande, MDJoseph S. Neimat, MD, MSAndrew P. Carlson, MD, MSStephen Griffith, MDTy J. Olson, MDEdward Chang, MDBabak Jahromi, MD, PhDMark B. Renfro, MDTapan Chaudhuri, MDSheldon Jordan, MD, FAANJames Robinson, MDJames M. Chimenti, MDWayel Kaakaji, MDBenjamin Rosenbaum, MDJonathan S. Citow, MDBrian H. Kopell, MDJoshua M. Rosenow, MDAaron A. Cohen-Gadol, MD, MScVarun Kshettry, MDK. Singh Sahni, MDAlain C.J. De Lotbiniere, MD, FACSLauren Levi, DMDLaligam N. Sekhar, MD, FACSPaul W. Detwiler, MDP. Jeffrey Lewis, MDFrancisco X. Soldevilla, MDBradley Eli, DMDTimothy Link, MDAzik Wolf, MDChikezie Eseonu, MDJonathan Lustgarten, MD— 12 —

PATIENT PROFILE The BeginningThree Decades of SupportEvery person has a unique story, but we sharefacial pain. By sharing these stories, we hopethat you might find some inspiration, ideas,or will be moved to support your communitymembers. The following is not intended to bemedical advice or promotion of any doctor,treatment or product.Claire Patterson, Founding DirectorWhen did youfirst start havingsymptoms andwhat were they?Clair Patterson speaking a an FPA galaLike most individualswith trigeminalneuralgia (TN), I canstill remember myfirst excruciatingTN attack in 1976.One morning while putting on my makeup I touched thetip of my nose and a bolt of pain passed through my check.Although the pain was brief, it was not like anything I had everexperienced. Prior to this, I had two years of a dull toothachelike pain on the left side of my face. After many x-rays andvisits to the dentist, I was assured that the pain was not adental problem. Today, this pattern of starting out with vaguesymptoms before developing into the sharp, piercing attacksof TN is called pre-trigeminal neuralgia. As the attacks becamemore intense and consistent, a diagnosis of TN was easilyconfirmed by my internist.What treatments did you receive and were theysuccessful?The first few years of my TN journey were managed bymedication. As the attacks became more frequent andintensified, additional prescriptions were added to the mix.Over time, this cocktail of medications became less effectiveand the side effects more debilitating. It was evident thatmedical management was no longer doable, and I waseventually hospitalized in a university teaching hospital.what you are experiencing. When I mentioned to Dr. Jannettathat there should be an organization for people with thisdisorder, his answer was simply “Why don’t you start one?”Who could decline such a request from the doctor who hadgiven you back your life?How has the Association grown over the years?My initial vision of the organization was one whose primaryfocus was to provide information and support to those afflictedwith TN and to their families. Once TNA’s nonprofit, tax-exemptstatus was secured, I enlisted Dr. Jannetta’s support to chair andappoint a Medical Advisory Board (MAB). His enthusiasm andsupport were indeed inspiring. Many of the key specialists inthe treatment of TN that he appointed are still actively involvedwith the Association today. Dr. Jannetta’s leadership and MABparticipation established the medical credibility that was sovital to the growth of the Association.A great deal of progress has been realized since TNA’s foundingin 1990, when the national office consisted of a wall phoneand my kitchen countertop in Barnegat Light, NJ. At that time,our mailing list consisted of 13 individuals and the operatingbudget was less than 500. Yes, we have come

Nicholas M. Barbaro, MD Malva Clinic for the Neurosciences UT Health Austin Kenneth F. Casey, MD Chief of Neurosurgery Oakwood Southshore Hospital Steven D. Chang, MD Stanford University School of Medicine Neurosciences Professor Gary D. Klasser, DMD Associate Professor, Diagnostic Sciences LSUHSC School of Dentistry Michael Lim, MD

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