annual report - fpa...of trigeminal neuralgia is a well-informed patient.” — dr. albert rhoton,...
TRANSCRIPT
— A —Facial Pain Association
A N N U A L R E P O R T
E D U C A T I O N A D V O C A C Y S U P P O R T
2 0 1 8
W H O A R E W E ?
The Facial Pain Association (FPA), a non-profit, 501(c)(3) volunteer organization, was founded in 1990 by a team of people who were profoundly grateful for recovery from years of disabling trigeminal neuralgia pain. The organization now assists thousands of others around the world. FPA has emerged as the world’s leading resource for information and 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 a Chief Executive Officer and a Board of Directors.
G O A L S & O B J E C T I V E S
To accomplish its mission, FPA will:
• Maintain a support network across the USA and around the world
• Manage a website providing worldwide access to accurate and timely information
• Establish a conference program supported by healthcare experts
• Furnish patients, healthcare profes-sionals and others with education-al materials and information
• Create and manage a virtual com-munity of face pain using multiple social media platforms
C O R E V A L U E S
Professionalism: to maintain high ethical standards with a focus on improvement in treatments, proce-dures and patient careCompassion: to recognize the impact of chronic facial pain and to treat every patient and family member with courtesy, concern and respectObjectivity: to act in the interests of our patients without biasInnovation: to use technology to further FPA’s missionAdvocacy: to increase public awareness and promote the inter-ests of our patients
O U R M I S S I O N
To serve those with neuropathic facial pain, including trigeminal neuralgia, through support, education, and advocacy.
V I S I O N
To be the most reliable and comprehensive resource on facial pain conditions for patients, their families and healthcare professionals.
Welcome
— 1 —Facial Pain Association
22D SE Fifth Avenue • Gainesville • FL • 32601-7092 • Ph: 352-384-3600 • www.facepain.org
EDUCATION • ADVOCACY • SUPPORT • SINCE 1990
Dear Friends,
The Facial Pain Association enjoyed a transformative year in 2018. We welcomed new staff, new Board Directors and new medical professionals to our Medical Ad-visory Board. We moved offices, we saw thousands of patients join our Facebook support group and hundreds more become new members of the Association.
These changes, along with the support of our members, donors, sponsors, sup-port group leaders and volunteers, will help us to meet the challenges of 2019. First and foremost of which will be delivering our mission of support, education and advocacy to people suffering with facial pain and their loved ones around the globe.
The highlight of 2019 will be the Facial Pain Association’s 11th National Confer-ence on November 2nd and 3rd at the University of California San Diego School of Medicine and sponsored by the UCSD Department of Neurosurgery. The confer-ence will bring together some of the world’s leading experts on diagnosing and treating trigeminal neuralgia and related facial nerve pain with hundreds of peo-ple impacted by this disease. It will also kickoff the FPA’s 30th Anniversary in 2020.
Please join the Facial Pain Association by coming to our conference in November, or by becoming a member, volunteer, donor or sponsor. Become part of our grow-ing voice to raise awareness of this rare and dreadfully painful disease.
Since 1990
John Koff, CEO
2018 Annual Report ContentsCEO Welcome letter ..................................................................................................................................................... 1Leadership ......................................................................................................................................................................... 2How to Reach the Facial Pain Association ..................................................................................................... 32018 in Numbers ........................................................................................................................................................... 4Individual Membership Program ......................................................................................................................... 6Donor Recognition ....................................................................................................................................................... 7Professional Members ................................................................................................................................................ 9Professional Member Organizations................................................................................................................10Patient Profiles ...............................................................................................................................................................11Active Members ...........................................................................................................................................................14Honorary Tributes 2018 ...........................................................................................................................................19Memorial Tributes .......................................................................................................................................................20What you can do to help in 2019 ......................................................................................................................21
— 2 —Facial Pain Association
Board of Directors
Jeff Bodington Chairman
Anne B. Ciemnecki Secretary
Medical Advisory BoardJeffrey A. Brown, MDNational Chairman, MABNeurosurgery Director, Cyberknife ProgramWinthrop University Hospital
David A. Sirois, DMD, PhDDental Chairman, MABAssociate Professor, NYU College of Dentistry
John M. Tew, Jr., MDMidwest Director, MABClinical DirectorUniv. of Cincinnati Neuroscience Institute
Mark E. Linskey, MDWestern Director, MABAssociate Professor of Neurological SurgeryUniversity of California, Irvine
John F. Alksne, MDProfessor of NeurosurgeryUC San Diego
Nicholas M. Barbaro, MDProfessor & Chairman of NeurosurgeryIndiana University Neuroscience Center
Steven D. Chang, MDStanford University School of Medicine, Neurosciences Professor
Gary D. Klasser, DMDAssociate Professor, Diagnostic SciencesLSUHSC School of Dentistry
Michael Lim, MDAsst. Professor, Neurological Surgery, Johns Hopkins Univ. School of Medicine
Donald Nixdorf, DDS, MSDirector TMD & Orofacial PainUniversity of Minnesota
Julie Pilitsis, MD, PhDAlbany Medical Center
Raymond F. Sekula, Jr., MDAssistant Professor of Neurological SurgeryUniversity of Pittsburgh Medical Center
Marc Sindou, MDProfessor Emeritus of NeurosurgeryUniversity of Lyon, France
Konstantin V. Slavin, MDProfessor, NeurosurgeryUniversity of Illinois College of Medicine
Gary L. Stanton, MD Emerson HospitalBoard Certified in Neurology and Pain Management
Harry Van Loveren, MDProfessor of NeurosurgeryUniversity of South Florida Health
Richard S. Zimmerman, MDProfessor of NeurosurgeryMayo Clinic
Leadership
The YPC Board of Directors is comprised of seven TN patients, ranging in age from 18-39 from across the United States.
FPA Staff
John Koff, Chief Executive Officer
L-R: Jeffrey Fogel, MD, Henry A. Gremillion, DDS, Ally Kubik, David Meyers
Ray Rivera , John Temple, Eric Wertheim
Pam Neff, Amy Turner
Nancy Oscarson, Cindy Ezell, Mitzi Korb
L-R : Claude M. Aldridge , Melissa Anchan, Ramesh P. Babu, MD
Stephanie Blough, Ohio
Ellie Eichenlaub, New York
Nick Foley, Illinois
Mandi Ginn-Franz, Illinois
Chris Nolze, New Jersey
Rachel Triay, Louisiana
Kenzie Winslow, Colorado
— 3 —2018 Annual Report
Web and Social Media Resources
ConnectFacial Pain Association (FPA) is dedicated to making sure that patients and caregivers have all the support and resources necessary to spread the word and get help. Educated patients can understand options, take advantage of the FPA support network and learn to manage this disease so it does not manage them.
“The best ally in the treatment of trigeminal neuralgia is a well-informed patient.”
— Dr. Albert Rhoton, Jr.
Email: [email protected]: 22 SE Fifth Avenue, Suite D
Gainesville FL 32601Phone: 800-923-3608
facepain.orgFPA website provides education, support and advocacy for patients suffering with TN and related facial nerve pain.
facebook.com/facialpainassociationFind the latest announcements, as well as interesting articles relating to facial pain and the association.
FPA | Official Trigeminal Neuralgia Network• JOIN!• Share and connect with other patients• Read patient posts and points of view• Post to our page if you find an
interesting article or have something to share with other patients.
Young Patients Committee facebook.com/tnaypc/The Young Patients Committee is the division of The Facial Pain Association specifically for patients under the age of 40. Our members range from children to 39 years old.
twitter.com/facialpainassocJoin the discussion by following our frequently used hashtags:
#TrigeminalNeuralgia#facepain#facialpain#chronicpain
— 4 —Facial Pain Association
Thank you for your support in 2018. Here’s how you’ve helped further the Facial Pain Association mission.
500 FPA Patient Guides
downloaded monthly
2,000+ Facebook members
Young Patients Committee
6,800 Facebook Likes
4,000 - 8,000 feeds/week
5,000 journals mailed quarterly
30,000 journals emailed quarterly
30,000 website visits per month
150 Conferences attendees
2018 IN
850 Active FPA Members
600 books purchased 25 International
support groups 300+ attendees
500 attendees per session
10 WEBINARS
12,000+ Facebook members
2,500 followers on Twitter 10k+ Tweets
100 new Facebook friends a week on average
Provide support to approximately 60 incoming callers/week
Numbers
— 5 —2018 Annual Report
2018 Source of Revenue
3% Book Sales
7% Memberships
2% Quarterly Sponsors4% Investments
3% Facebook
13% Board of Directors
3% Matching Gifts
13% Professional Memberships 48%Constituent
Gifts
4% Conferences
Use of Funds
86% Patient Programs& Support Services
8 % OperatingExpenses
6 % Fundraising
as of December 31, 2018
2018 Programs & Support Services
14%
12%
22%
17%25%
10% Books and Pamphlets
Conferences
WebsiteTelephone Support
Quarterly Journal
Social Media
Financials
ANNUAL DONOR Individual Membership Program Recognition Levels
Chairman’s Club• Prominent recognition at the Gainesville headquarters office • 100% Discount on all FPA books• 100% Discount on FPA Conference Registration Fee
Platinum• Prominent recognition at the Gainesville headquarters office • 50% Discount on all FPA books• 50% Discount on FPA Conference Registration Fee
Gold• 25% Discount on all FPA books• 25% Discount on FPA Conference Registration Fee
Silver• 15% Discount on all FPA books
Patron• 10% Discount on all FPA books
Friend• 5% Discount on all FPA books
Benefits – all levels• Recognition in the Annual Report• FPA Quarterly Magazine Subscription• Newswire Email Monthly Subscription• Access to Live Webinars
Recognition Levels Chairman’s Club
$15,000-$25,000
Platinum $5,000 to $15,000
Gold $2,000 to $5,000
Silver$500 to $2,000
Patron $100 to $500
Friend $50 to $99
— 7 —2018 Annual Report
PlatinumJames R. AltorferGwen AsplundhRamesh P. Babu, MDAnne B. CiemneckiElizabeth S. HoffmanRichard MarschnerDavid MeyersJean C. RaymondRay RiveraRoberta Rowan
GoldClaude AldridgeMelissa AnchanRichard FredaHarvey ChernerPeter MartinArt R. McHaffiePaula RosenfeldJoseph SmithJohn TempleMark E. Linskey, MD
SilverRebecca B. BrandNell ChannellPamela CliffordMichael CohenNyda ConcialdiJohn ConwayKathy CurranVictor Del FaveroDominion Energy Charitable FoundationGlenn DredgerCliff FleenorJeffrey Fogel, MDYvonne FrankewichFreddy GandhiGlenn GordonDennise J. GormanRobert GreyCynthia Johnson HallMarianne HartCristina KantzDana Langerman
John L. MacKenzieJanet McConnellRoy MooreKari NationsJerome NewmanBabagaunda PatilDuane PellervoLinda PerdueEmilie PhillipsBrian PowerMargaret M. PrietzRAMS, Inc.Denise RamzyAshley SandviKatherine W. StevensPatricia SublettConnie ThornberryLynn WendellGlenn WestKaren WilsonCynthia WoodsMichelle ZiembaRichard Zimmerman, MD
With great appreciation we recognize the following 2018 Donors
Chairman’s Club Jeff Bodington
Morris M. Messing Foundation, Inc.Estate of Mary-Ann Neri
I am just so thankful that people like you are helping the healthcare industry to realize TN is a real and major problem for people with pain.Thank you for all you do. It is really appreciated.
— S. D.
Thank you so much for your continued help and support! My condition is complicated (ATN) and I am very limited in my ability to read and research as this is one of my triggers. I have been losing hope that I will ever get some pain relief. Your words of encouragement and suggestions have literally saved and changed my life.
— C.H.
— 8 —Facial Pain Association
PatronsPeter Albertsen John Armstrong Kirsten AustinRobert BartellWilliam L. BayCandace & Wayne BeachSuzanne BeckwithCarolyn BellJanine BenedictHelen BerndtEdward Beyer Julie BorschkeKen BozickLauren BrownDiane BurtMartha & Ronald CaldwellRobert CazzolaSusan J. CerriCharlene ChurchillJohn CoatesVirginia CoburnDaniel CroweHarold DelisleJoyce & Delmer DavisRobert A. DeaneJoseph DobesElizabeth DoyleMary DraegerNicolae DumitrescuPeters J. ElbertBarbara EvansCindy EzellJill FredriksonRichard FreedmanJoanne Gerstle Doug GlowackiPam GoehringStephen GoolsbyCyndy GrahamChloann GreesonCarol GreetChristina J. GrimmRita & David GrossLarry GrotewielLinda & Paul GysenDavid HallowesEugenia T. HarringtonDavid HaunMeredith HersheyLouise HickokJoyce HierMary HilgertAshley HillArnold IsraelNina Johnson
Rosalind & Richard KaufmanDorothy KelliherKevin KingBette KishJordan KohlSharon Krevor-Weisbaum & Harold WeisbaumAlly Kubik Annette & Edward KubinecWilliam LaiMarilyn LanctotBev LawsonPhillip LawsonAlice LeoneLuna LevinsonPatricia LoTurcoRichard MaggioCaryl MahoneyAudrey MartinuzziMarlene McCabePaul McMahonBarbara & Tony PaolozziDenise ParisEsther & John PasalisJill PereraShirley PerryPaul PetraliaScott PierattEverard PinneoSteve RedwineShannon ReichCameron RichardVincent RinehartNancy RogersJohn RolfeJohn SalvinoGretchen Schultz Arthur SchwartzJanet SchwartzSandra SheppardJames SherryJudith SimpsonRussell SjaardaKaren SmirlLinda SmithSusan SommersDavid SpathWilliam StarrBart StevensCheryl StibelCita StraussPatti StrobelElayne StudenbergSean SullivanTerry Taylor-AllenGeorgia ThomasMichael TigheMargaret TononAnn H. Toole
Mia Van WagenenBettye S. WalkerLun WangEric WertheimMichael WhiteSharon WindwerFloyd Winslow, JrPat Yendra
FriendsPaul AllenEmily AmesRoxanne AntonationIda AshbyDelia A. AtkinsonRuth BanciuAdele BaratzCarol & Denis BerardiRichard BlackLeigh BlackmanLinda BranchElda & Mario BrontoliJudith BrownVincent ButeraJoanne CarterCheryl ClarkEmily CogleyKathy CopeCarol CornellDonald CriswellSteve CummingsCurrent DampierSanford DashJulie DavisArlene DeFrances Robert De FranciscoJulia A. DiazHelen DickeyMichael DircksenDelbert DonelsonCarole J. DuckworthHazel DukesSandye Aldridge DunlapRose EnloeMary Kate FischerKathleen FrewCharles H. FryCindi GallagherPaul GeisheckerPat GiannaccoBernietta GrafGloria & Dick GraferRonald GranbergKaren GriffinGeorge GriffithMarlene GrimesKenneth HandelCheryl HandrenMichael HannemannMark Hansen, DDSSuzanne HarrisLinda HawleyStephanie & Richard HawleyKari J. Hazen
Rochele HearstLu Ann HostetterJoan HostetterLinda HughesKenneth HutyraRoslyn JohnsonRon JonesDiana JuracoElizabeth KeeferAudrey KerswellHoward KiedaischCathy KimballDorothy KristyDonna KohleyMary KrellCarol KroslowCele La’ChanceJudy LamontSally LapidussNorma LapointeCindy LincolnLoretta LockettCarole LongLaurance LongtinDennis LynchDavid LyonElizabeth & Robert LyonMallory MacIsaac Joan & Bill MarcyGladys MarkowskiAimee MartinElizabeth MartinezRoger P. MasterMary E. MattioniElizabeth MazzeiJanice McConahyAlison McCraryBrian MedeirosErna & Rodney MillerSusan Miyake-TerhuneJoyce MoodyCarrie MorrisEllen NewmanDiane & Bruce NoriegaNancy O’FlinnMaureen OjalaDonna Pelczarski
Mitra PerelJenna PierceMary PingelPatricia PriorPamela PowellDonald RamseyEileen Wellbrock ReedKathleen ReidNancy RichardsLaura RogersEmery RogersHarold RostokerJeff RothGerald RothsteinSteven SaraccoFrances SciutoVirginia ShannonHerman ShawMarcia SheeseRosalyn SilbersteinGina SimonIna SlutskyLeo SprecherGayle SpringerKat & Jerry SterndaleClark StevensGinger StoneRonald M. SwartzStanley SweitzerLeVonne TaylorJean & Mark TeelConnie ThomasDillard ThompsonCharles E. Timblin, Jr.Christine ToppCarol A. TrombleyMarcia VietsDavid VoracekGwyendella WalkerClaire WallerCathy WaltersHoward Webb, MDBryant WhittakerSonya WilliamsWilliam WilliamsTeri WongRobert Zawacki
Your support helps connect the TN community in our shared effort to end the pain.
Just wanted to thank FPA for the webinar on Neuroplasticity.I’ve been trying to incorporate this as part of my daily routine. I really enjoyed the insight on how Neuroplasticity can help me manage pain.
Much appreciation, M. F.
— 9 —2018 Annual Report
David W. Andrews, MDAlan Appley, MDJohn L.D. Atkinson, MDSteven C. Bailey, MDChristopher Baker, MDSamuel L. Barnett, MDFrank David Barranco, MDDonald Behrmann, MDBernard R. Bendok, MDNathan Berbereia, DCGeorge K. Bovis, MDRobert E. Breeze, MDJohn C. Breneman, MDMichael Brisman, MDRonald Brisman, MDAndrew P. Carlson, MDAli Chahlavi, MDBrian Chang, MDEdward Chang, MDTapan Chaudhuri, DCWilliam P. Chesire, MDJames M. Chimenti, MDJuno Choe, MDRichard T. Chung, MDJonathan S. Citow, MDWilliam Cobb, MDAaron A. Cohen-Gadol, MDHerbert Mark Crabtree, MDE. Thomas Cullom III, MDEdwin J. Cunningham, MDAnthony D’Ambrosio, MDShabbar Danish, MDAmir Reza Dehdashti, MDMargaret Dennis, DMDPaul W. Detwiler, MDChad DeYoung, MDVincent A. DiNapoli, MDChristopher Duma, MDMark Bruce Eisenberg, MDChikezie Eseonu, MDDavid Estin, MDJames J. Evans, MDMelvon Field, MDTymothy Flory, DC
Brian D. Fuselier, DDSEric Gabriel, MDRavi Gandhi, MDMichael L. Gelb, DDSSteven L. Giannotta, MDMark Goldman, MDDavid Gower, MDJordan C. Grabel, MDThomas W. Grahm, MDAndrew W. Grande, MDSimon Haft, MDStephen J. Haines, MDAnthony Harris, MDHoward Holaday, MDMichael Bruce Horowitz, MDJames Robert House, MDFrank P.K. Hsu, MDBabak Jahromi, MDGuy Jones, MDSheldon Jordan, MDWayel Kaakaji, MDShannon Kahn, MDMichael Kaplitt, MDRobert Gawley Kerr, MDJared Knopman, MDThomas Kole, MDBrian H. Kopell, MDChandan Krishna, MDAaron S. Kusano, MD
Joseph A. LaBarbera, MDJoseph C. Landolfi, MDTed A. Lennard, MDMitchell Edward Levine, MDAdam Lewis, MDP. Jeffrey Lewis, MDMichael J. Link, MDAlain C.J. De Lotbiniere, MDJonathan Lustgarten, MDJ. Charles Mace, MDAli Makki, MDAntonios Mammis, MDGeorge T. Mandybur, MDAlexander Mason, MDMichael McDonough, MDMark R. McLaughlin, MDRobert A. Mericle, MDFredric B. Meyer, MDAlex Mohit, MDChad Jason Morgan, MDYaron A. Moshel, MDStephen Nalbach, MDDaniel G. Nehls, MDMichael G. Nosko, MDEric Nottmeier, MDTy J. Olson, MDStephen Parker, MDRob G. Parrish, MDLuke Pater, MD
Huong T. Pham, MDBruce E. Pollock, MDAshutosh Pradhan, MDJ. Adair, Prall, MDSalim Raham, MDJohn Rieke, MDRonald Reimer, MDMark B. Renfro, MDJames Robinson, MDMurray Robinson, MDDavid Rosen, MDBenjamin Rosenbaum, MDJoshua M. Rosenow, MDRobert H. Rosenwasser, MDK. Singh Sahni, MDAbhay Sanan, MDMichael Schulder, MDMarc S. Schwartz, MDLaligam N. Sekhar, MDStephen H. Settle, MDAshwini D. Sharan, MDPeter M. Shedden, MDJason Sheehan, MDFrancisco X. Soldevilla, MDRandy Sorum, MDPhilip E. Stieg, MDRobert D. Strang, MDLouis Vita, DDSHerbert Wang, MDRonald T. Warnick, MDDavid B. Weintraub, MDMichael F. Wesson, MDRobert E. Wharen, MDCharles L. Wolff, MDJeffrey L. Woodward, MDMichael J. Workman, MDChengyuan Wu, MDJulian Wu, MDZhiyuan Xu, MDJohn S. Yordy, MDSteven Zachow, MDLucia Zamorano, MDArnold Zeal, MDMario Zuccarello, MD
In April I emailed you requesting help in finding a surgeon to help with my TN. You recommended several neurosurgeons in my area. In April I had surgery and I am very pleased to tell you the pain is GONE.Thank you for your help,
— T.C.
Professional Members 2018
— 10 —Facial Pain Association
Anchorage Radiation Therapy Center
Austin CyberKnife
Boston GK Center
Central Wyoming Neurosurgery
Emory Saint Joseph’s Hospital of Atlanta
Advent Health-Neuroscience Institute
Goodman Campbell Brain and Spine
HCA Midwest Health
Hoag Hospital
House Neurosurgical Associates
The Johns Hopkins Hospital
Johnston-Willis Hospital
Mayfield Brain & Spine
Mayo Clinic
MiamiNeuroscienceCenter at Larkin
Neurological Surgery, P.C. “NSPC”
New Jersey Neuroscience Institute
Northwell Health
Parkview Health
Robert R. Smith,MD Gamma Knife Center
Robert Wood Johnson University Hospital
Rocky Mountain Gamma Knife Center, LLC
South Sound GK Center
Springfield Neuroligical & Spine Inst.
St. Luke’s The Woodlands Hospital
St. Vincent’s HealthCare
Thomas Jefferson University Hospital
UC Irvine Medical Center
Univiversity of VA, GammaKnife Center
University of Cincinnati
Valley Health Systems
Weill Cornell Brain and Spine Center
Professional Member Organizations 2018
For information on professional membership please contact the Facial Pain Association
800-923-3608 [email protected]
Having TN is terrible. Having the support from Facebook and from you and the other staff/volunteers has been a blessing from heaven.
Thank you from the bottom of my heart.— C.H.
I appreciate the encouragement this organization has given me when I needed it most.
— L.W.
— 11 —2018 Annual Report
ProfilePatient
Name: Karl Kroeppler
TN Story: It started about 10 years ago. I was toweling off after a shower one night and I felt a small spark in my forehead. I didn’t think anything of it at the time but was concerned. Over the next 2-3 weeks, it turned into full blown electric shocks on the right side of my face. I screamed and swore uncontrollably when the episodes occurred.
Art Integration: I’ve always considered myself an artist. I was the kid who was always drawing and painting. After high school, I studied at Arizona State University and received my Bachelor of Arts Degree in Studio Art. Thirteen years later I returned for my Master of Fine Arts Degree in Drawing and Painting.
When everything got worse at the end of 2015, I told my wife from here on out I would only create work about TN to educate people. When you go into an emergency room – or anywhere, really – people have no idea what you’re talking about. The ER had no understanding of how to treat me and told me to take Tylenol for my headaches. I made the decision then that this has to stop. Not only is it terrifying to have episodes of facial pain, it’s more terrifying to have an entire hospital staff not know how to treat you.
It’s awful.
I decided to make art my full-time career and all of the art I create deals with trigeminal neuralgia in one way or another. I’m putting myself out there to educate the general public, in all of the forms of art I produce.
Ultimate Goal: My goal in life is to educate people. I want to show them there’s a formally trained artist, working in the fine arts, trying to reach out to the general public and educate them about trigeminal neuralgia. This is my life from here on out, and I can’t imagine doing anything else other than this kind of imagery. I realize the power of art. Art truly can heal and provide comfort. I know there are people out there who are expressing their experience with this affliction through various media and I encourage them to continue in order to help them find some peace or comfort during their darkest days.
I want to show people that there’s someone out there making lemonade from lemons.
To learn more about Karl’s art and see more examples of his work, visit https://kroeppler.weebly.com
— 12 —Facial Pain Association
ProfilesPatient
Name: Linda Perdue
In August of 2016 I was diagnosed with trigeminal neuralgia. I had relief for 2 months with tegretol but became severely allergic to it. My neurologists tried all combinations of drugs for pain relief and when that failed, I even opted for cervical chiropractic care and acupuncture. My active lifestyle became severely curtailed. I was battling severe pain that made even eating, brushing my
teeth and washing my face a total nightmare. I honestly did not know where to turn next as I was in so much pain and depressed.
I searched the Internet and came across the FPA. I don’t know where I would be today without that connection. I called and Mitzi became a compassionate listener and patiently started sending me lists of doctors, alternative treatments and videos of past trigeminal conferences.
It was a great educational resource and enabled me to start moving forward in my search for healing. I was surprised to find out there were so many positive choices to move towards healing. I loved the video by Dr. Alksne explaining what to look for in a surgeon who will be performing a MVD.
Mitzi and Pam Neff, the nurse at FPA, told me Dr. Alksne was in my area and that would be a good place to start. After meeting with Dr. Alksne and having several tests, he performed my MVD surgery in late 2017 and I can say that it was life changing.
I had an MVD done on a vein with 3 strangled nerves. The minute I came out of surgery I was pain-free and have remained so 3 months later. MVD’s are typically only done on arteries, but there is always hope and different procedures available... with the many good doctors out there and the compassionate and empathetic help of the FPA, you too can find help and healing. I feel so blessed to have been treated by Dr. Alksne and to have had the direction from the FPA. Without their help I truly don’t know if I would still be here today .
Name: William Clark
Where do you live? Willingboro, NJ
How old were you when you were diagnosed? Age 30
What was your diagnosis? My initial diagnosis was trigeminal neuralgia, type 2, on my right. Two months later, the pain started on my left, fast forward two years later and add on the diagnosis of occipital neuralgia, on the left.
What do you do for fun? When the pain allows, travel and go to the movies.
What has TN taught you? TN has taught me alot, but I have learned who will be in your corner and who won’t be in your corner. Most of all, it has taught me that I was given this disease for a reason, to advocate and educate others.
What treatments (non-surgical) have you tried? Acupuncture and massage
Have you had any procedures? No
How has your facial pain changed you? Well, I go into what I call “hibernation” from November to March because of the cold weather. So this has taken a toll on my social life. I also have a two year old son. What I can do for and with him has changed because of my pain. It is definitely hard, for me to say “no, daddy can’t do that.”
What tips do you have for other young patients? Get a good support system around you, meet other TN patients- they are dealing with the same thing you are and can be a great addition to your support system, don’t let TN stop you from doing what you want, and attend conferences, they are very informative.
— 13 —2018 Annual Report
ProfileName: Mackenzie Winslow
Where do you live? Highlands Ranch, Colorado.
How old were you when you first experienced facial pain? I was 11 years old and playing softball when I first experienced TN.
How old were you when you were diagnosed? I was diagnosed pretty quickly, just weeks after I first experienced
pain. I was still 11 years old. It was an emergency dentist who first uttered the words “trigeminal neuralgia” to me and my parents. The diagnosis was confirmed at an emergency room later.
What was your diagnosis? My diagnosis is TN1.
What do you do for fun? For fun, I read, hang out with my friends, color, and model in California!! I’m also applying to colleges currently. College was something I never thought I’d be able to do, especially not out-of-state. But now, after my MVD, I have the chance to really chase my dreams. It’s so rewarding to receive admission into some of my top choice schools (I’m still waiting for most!) and to see how much they believe in my ability to succeed. Middle and high school was difficult with TN, yet the hard work has paid off and I have been awarded scholarships I never thought possible. Looking to the future like this has really been a great experience that I’m lucky to get to have!
What has TN taught you? TN has taught me that I AM capable of adapting to new situations. I had to change much of my daily routine and it was hard at first, but it became my new normal. It also taught me the power of family and friends. I lost a lot of friends along the way, but the friends who stayed
by my side proved to me that they were true friends. TN helped me see the true side of people sooner than I would have if I didn’t have TN.
What treatments (non-surgical) have you tried? MAGO (Maxio Anterior Guided Orthotic), acupuncture, upper-cervical chiropractic treatments, massages, trileptal, gabapentin, steroids, chinese herbs, marcaine injection, biofeedback, valtrex, a TENS unit, tegretol, oxtellar, and gralise.
Have you had any procedures? I had a microvascular decompression on March 4, 2014.
How has your facial pain changed you? I had to grow up a lot more quickly. I don’t wish my diagnosis never happened because I think it shaped me into the person I am today. Because of what I’ve been through, I’ve realized that I want to use my life to help people. And it helped me see people’s true colors, which has given me the chance to form stronger bonds and friendships with people who are worth it.
What tips do you have for other young patients? I think that having an open mind is vital. If I didn’t have the optimism I did when I was going through pain it would have been much more difficult. I’ve experienced healing pain since my surgery that I think a lot of people have post surgery and it’s been extra tough to stay optimistic through that, but it’s also been incredibly important. I know that with four years of pain comes four years of healing and I’m ready to face that. But you have to stay optimistic and happy throughout the healing process or you’ll only cause more challenges for yourself. Also, I realized that tough love from significant others is still love. I struggled with the tough love my parents gave me, but in the end I realized that they only wanted the best for me and were trying to help me. Take one-on-one time with those you love because it can be overwhelming for them too and it’s important for them to know that even amidst your pain you can still love them.
Young Patient
Arthur AbbeyStacie AbrahamLeonard AbramsLollie AbramsonPam AdamsFolashade (Sade) AdediranTerry AhernEyad AlbayoukTamara AlberyDixie AlbrightMarian T. AldridgeDomingo AlgorriTimothy AmecheMelissa AnchanSarah AndersDouglas E. Anderson, MDWayne J. AndersonRegina AnthonyDiane AntonetteJoseph E. ApicellaGloria AplinJa ArezziMary E. ArgerisTiffany ArmstrongJohn ArmstrongMariso ArvizoIda R. AshbyBillie AshleyJanis AsratGregory AugustineMarilyn AugustineAlbert AusterVicente AyarzaRussell N. BabcockHelen BabyakSylvia BaconShannon BaileyThomas BaileyBev BakerMary Baker
William BalthropeFaye BandowNellie BargAnn BargyCindy BarlinrMark BarthelmeJean F. BaumanNancy BeanCharles BeaudoinMaria BecerraEdward BeckBurton BeckerJudy BedfordCheryl BeechKecia BeggsCarrie BellahCarol BenderCindy BennettKimberly BensenBeth BergerMyron BergerPerry BergmanMarnie BerkElaine H. Berkowitz, DMDJoylynn BerschauerMartha BertrandAnthony J. BilanginoElise Billock-TropeaPamela A. BiskePhilip BiskeRichard BlackshereMiriam BlaneTamara BlazeFrank BlennauDebra BlitzerDavid R. BlockJames A. BlodgettBrian BlohmHazel Blumberg-McKeeRoberta BlumenshineMonica M. Bogucki
Christa H. BoltonRichard L. BoosingerBrenda BardelangJulie BorschkeMarianne BournazianStephane BourqueRichard BowenRebecca B. BrandGlenda BrandonAnn BrazelLynn BregmanGeri BrodieCharlotte BronstonElizabeth BrownJanet BrownJudy BrownPaula BrownSusan BrunerOsvaldo A. Brusco, MDRegina BruskyEugene F. BryanNancy BryantA. BrysonDolores BuechlerMary Ann BuettnerCharles BuettnerSherry BuhlerJudi BurgerDeborah BurlingameTammy BurnsKaren BurrowHelen L. BurrowsEvelyn BurryBarbara D. ButlerChristine CalabreseDouglas CaldwellJoan E. CannelliLonnie CaponLinda CareyBess CarlsonMilton Carlson
Sharon D. CarriganJoanne CarterJames CarterCatherine CaseyJoann CastelloGail CaugerSuzan CecilDona CerasuoloJeanie ChamberlainMaurita ChandlerPaulette ChandlerRhodia CharltonHarvey ChernerRobert ChernowLucy ChildsAlan ChildsLaura ChiminelloJudith ChodilMargie ChodorowBeverley ChristensenJoe L Christian, JrTatiana ChristianEldon ChristiansAnn T. ClaytonMarlene ClevengerPamela Clifford, RNBrenda Cody
I want to thank you so much for being there for me on Wed. I so needed someone to talk to and get some advice. Thank you for being my angel that day. I will never forget that.
— L. F.
2018 Active Members
— 14 —Facial Pain Association
Betty Jane (BJ) CoghanThomas CoghanFrank CogornoMichael CohenMichele CohenSarah CohenMary M. CollettAngela CollinsRoberta J. CollinsJohn ColluraMary ColluraNyda ConcialdiJohn ConwayKathryn CooperLinda CooperTeresa CordonnierDolores M. CornejoJames CossonJanet M. CotugnoKay CousineauBronwyn G. CowellJohn CowellBrenda CoxMary Lee CoxKelvan CoxTracey L.ynn CoxRichard C CretterDiana CritesEileen J CrowleyDebbie CulliganJoAnn S. CummingsErnest CuniKathy CurranCharles M. CurtisTerry Czigan, Ph D.Dorinda D. D’AgostinoDeborah DahlingerVickie W. DanceGerald DanceWalter DanielDaniel D’AnielloDarlene DanielsFaun DansonNancy L. DarrahElizabeth Dassau Anita J. DavisAnneka DavisEdward DavisJerrye DavisRosemary Day
Juan de BedoutNatalie De PenaLynn DealPennie DeeVictor Del FaveroTrudy DerryberryMargaret Des LauriersArt Des LauriersMarliss Desens, Ph.D.Thomas DesjardinsKathleen DettmanTony Di BonaRoxanne DickeyVirginia DickinsonCheryl DillardRamon DilleraDonald H. DillingerMary Carol DillingerDavid DinglerBill DioneDonna DixonMarilyn DixonBonnie DobbinsCheryl DobbsDelbert DonelsonSarah Donly, RN, LMTDenise B. DoucetteConni DowgiertGeorge DownsMary DownsJohn DrougasJohn DrougasJerry Drummond, MDCarrie Du BoisLinda DuffinBarbara DugganRaymond DunnePatricia L. DuweSusan DykesDaniel EachusMichael EbelingMary E. EchelbergerArthur M. Emery, IIIAndrew EnciscoHelen EngesethAllan EnisLori EnochianMark EppHarmona EppsKaleen Erb
Roxanne EricksonBenita ErikssonMark ErwinMariellen EslerRose Marie EsquivelKim EstradaRobert EtheridgeDelois EvansLinda E. EvansNicole EvansTom M. EvertCharles EvertsSusan EwaldChristine FalcoMary FambroughShera M. FarnhamDebra FarreauThomas FenstermacherEdward FentonStacey FergusonDiana FerrisFred FertadoAndrea FinchSamuel FinchCathy FindlingRichard FishmanLinda FitzgeraldSandra FletcherBarbara FloCheryl FlynnJeffrey Fogel, MDJean Koch-FogelPatricia FogginMelissa FogleSusan FolchiRamon FontaineJoyce ForckeRichard FowlksDeanna FowlksRobert FrancisGretchen FrancisSandra FraserBarbara Frazier-LindbladMichael LindbladRoger FreemanFelice FreemanWilliam C. FreemanCynthia Freitag Nancy FuchsJorge Funes
Janet FuquaMatthew GaffneySheila GaiserMargaret GalloWayne H. GambleAnthony GarciaJudith Gardner, PhDMarianne GarnerJoe GarnerChristine GarvaleJennifer GarvinStuart GauseSusan GayNathan GayPaul GeisheckerRobert GerdemanIlse GetmanGina GlazeAndrea GlennMaria M. GlennGary GlennDavid GlynMary GoelzAnne GoetzmanAndreina GoldbergSarah GoldbergHedda R. GoldmanLewis A GoldmanBarbara GonsalvesDrifthnery GonzalezEstela GonzalezSteve GoodLawrence GoodmanDavid GossKaren Gradel-KlosMaShawnda GrahamCarol A. GrangerDeborah GraySuzanne G. GregoryMary Jo GriffinGinger GrigsbyKay E. GrimRoger S GuernseyVickie GuiteJoseph GuiteJanice GundersenMary GunterKathy GustavsonJune M. HaberbuschSteffany Haertsch
— 15 —2018 Annual Report
Christine HallCheryl HandrenMary L. HanleyDonald J. HansenMargaret HansenLeslee (Lezley) HardingHolly Harkness-MurrayRohn W. HarmerDiane HarrisonMary Ann HarrisonMarianne HartMonica HartJim HartFred HarthenDoris HartsKenneth HarveyValerie HaynesKathleen HaysRussell HaysEllen HecklerJohn HehnenBetty Ann HeldHelen HennenMaureen HennessyTherese M. HercherHayim J. HerringCharles HesterKenneth HigginsJennifer HighlandKathy HiltonCindy Hirsch, MARobert W. HirschRobert C. HirstDonald HoblitMary HodgeClarence HoferElizabeth S. HoffmanDouglas HoldenJoanne HollandFloyd HollidayChristina HookJon R. HoppmanDenise HortonThomas D. HouleTracey HoustonJoanne T. HowardSusan HoweDavid HuangTerry A. HullBarbara Humphrey
Serena HunterTeri HuntingtonWarren W. Huss, DDSZach HustonCarrie HymanStephen IacovinoAnne IezziJane A. IrvingHella IttenbachGail P. IveyKarin JawitzJoanne JoeInger JohnsonMary JohnsonBob JonesEdith S. JonesMary JonesRandy JonesSherry JonesJohn JonkmanLinda JosephWolfgang JuekoffJanet JungRonald JutzySusan KaesemeyerCandace KahnJanet C. KamerosNatalie KarasturyFreedom Physical Therapy ServicesMarleen KarnsDarlene KastenR. A. KatherJosie KatzSabita KaushalHannah Crazyhawk KellerMary KellerMary Ann KellyKathleen KempkenHoward H. KendrickGloria A. KennardEleanor KennedyAngie KeppelPaul KeppelConrad KerwathJudy KeysJohn KeysElaine KicklighterEdmond F. KielyJihyun Kim
Darlene KingMark KingJanet E. KingCarol King-WansleyWalter H. KirschkelPam KleimFaith F. KleinDonald KleinJeri KleinNaomi KleinNancy KlugerPatricia C. Knight, RNBarbara Ambrosia KnutsonEd KopakowskiHelen KopkeSusan KosekFrances KramerDorothy KresconkoSherry C. KulifayJohn KulifayVijay KumarMary KussmannIsabella LaGrego Leticia LambinicioJudy LamontSuzanne LangAmy LangioneFaith LaningSally A. LapidussBarry M. LasnerJames LawrenceBilly R LeedyWilliam LehmanJoseph LeonardAllen LerouxJudith Levy
Carol LewinGwen Lias-BaskettJerome Lias-BaskettBernard LiebermanCarole L. LiljaCathy LincolnCindy LincolnSusan Mary LintonRoberta LipseyReba LittleFrank S. LiuDeborah LockwoodMichael LoganVicki LoganJennifer LogerstedtRobert LongJohn Long-McCulloughKathleen LopesJudith A. Love-EasthamJeff LovelandOlivia LuAnnette LudlamJason LuedtkeSheila LuellenEric LukensWendy LykaWilliam LynchBeverly LyntonSteven MaassRonald MacdonaldJohn L. MacKenzieAria MagiDenise MaireJulie A. MajorEllen Malessa
You have NO idea how much today’s News Wire meant to me, I received this story when I needed it most. In a time of severe isolation, I can read this to my husband and hopefully open his eyes. Thank, thank and thank you!!Kind Regards,
M. L
— 16 —Facial Pain Association
— 17 —2018 Annual Report
Phil MalikGabrielle MalloryBarbara ManningElisa ManteyDiana ManzoSonja MarderPatricia Mares-MischkeJay MarksShirley MarksRichard MarschnerAnthony Marshall-SmithTheresa M. MarstonAimee MartinLynne MartinPeter MartinAshley MartinRichard MartinRichard MartinRoger MartinSandy MartinSelma MartinMaria MartinuzziStacey MasonLarry MatthewsCatherine McCarthyMerle McCartneyJanice McConahyPaul McConahyWilliam S. McDowell, Jr.Ginny McGargillTracy McGeheeDale H. McKinneyConstance D. McMurrayJon MelanconKatie MerrillGayla MerriottStephen MeschlerDavid W. Meyer, Sr.Denise D MeyerJane MeyerVoncille MeyerDavid MeyersDenise MeyersPaul MeyersStephen MichaelDonna MichaelCheryl MicheliSal MilitoCraig MillerJoni L. Miller
Kelly MillerPamela MillerPeter A. MillerRebecca MillerSusan MillsPati MitchellSusan MitchellMichael MollerMaria MonteleoneCharlcie MontgomeryPaul MontgomeryJohn L. MoonCarolyn Ransom MooreJames MooreJim MoreCyndi MorganRobert MorsekDiane M. MosbruckerCharlie MosbruckerRobert MosesCarol MossRichard MottaCharles B. MuchnickMaureen E. MuckNatalie MullettJohn MunzerBeth MunzerPatrick MuriRobert MusserDawn NaquinAnand NarayananLaura NelsonLeRoy W. NelsonJean NewlinJill A. NicholsMurray NicolsonMarilyn NiemiMaureen NieseSandra NietfeldChristopher NolzeJeffrey NorwoodSteven ObertNancy O’BrienSusan OdePhyllis Z. OgofCynthia L. OkesonShirley OlsenBarbara OmothRobert OmothJanet L. O’Neil
Nora O’NeillTracey O’NeillMaureen E. O’ReillyMollie OsgoodGlorianna OteroThomas PaceMiYona PagniCody Marie ParrishClaire W. PattersonAli PatzFranklin PaulsonJackie PaulsonAlice E. PaxtonDain Paxton, DMDE. Madonna PeacheyLu PearMt. Ascutney Hospital & Health CenterEdith O. PembertonDonna PenalunaAndrew PensavalleLinda PerdueElaine Perkins LippsShirley PersingerLinda K. PetersMary Lou PetersonAndy PetitjeanDon PfotenhauerJames PhillipsNathan PieperAimee PieperRobert PlanteLinda PolandErnie PolandKelley M. PollardWilliam PoskaEleanor K. PourronPamela J. PowellBrian PowerJeanette PraetoriusMelissa PrescottVictoria PrevattCathy ProctonWanda ProctorBarbara PrytheroBelsora PuckettRay PuckettSheila PulfordLinda PerdueMary Jane Pych
Marge RahnDorothy Rainwater, RNTracy RamLeonard S. RamroopDenise RamzyJudy RandolphSteven RandolphJustus RandolphElizabeth RashDavid RaspLaurie RauchKathy RayJean C. RaymondSuzie ReeseKathleen ReidJohn ResnikElaine RetzlaffWayne RetzlaffJanice Revelos-AdamsSusan ReynoldsMatt RhettJanine RichDixie L. RichardsCarolyn RichterPatricia C. RigginsThora RileyBeverly RingelKimberly RiosAshley RizzutoNorah RodgersJoyce RosenbaumAlison RosenbergJason Rosenberg, MDTrudy RosenbergPaula RosenfeldLarry RosserDale RounsavilleKimberly RowanRowan Foundation, Inc.Cyrilla M. RoyceHerbert RoyceBarry K. Rozenberg, DDSPeter RubinCarolyn RubyLynn R. Ruppe, RNPeter RuppeJeannette RusbosinLisa RushfordRoberta SaahMike Saah
— 18 —Facial Pain Association
Bahareh Safaie, DDSLynn SalleeLorry SalleeThomas SamideMadeline SandersRaymond SandersAshley SandviElza SatterfieldVicki ScharringhausenJoseph P. ScheuchenzuberJudith SchieberlRomelia SchiroFranklin SchlegelNorma SchlegelValerie SchmiederMona SchorowKevin SchroederBrenda SchroederSherry SchroederLinda SchroffPearl SchulsonSteve Schwalbe, MDM. Joanne SchwebachFrances SciutoRon SconyersRuth ScottJennifer SeileLibby SellersSusan E. SeltzerHelaina SemmlerDavid SengelCathy SenterJoseph SepicBarbara A. ServilloRichard ServilloMilton SewardRuth SheetsAnne T SherrenAnn ShibuyaSteve ShintakuCoblentz DistributingPatricia ShoyinkaJan ShreveSheila ShufordAshley Silva PriscoDonna SilvertErin Silvert-NoftleDiane SimonCharles J. Simons, Jr.Joan SimonsTracy SimpsonMichael Sinclair
Gail SinwellAlan SiporinJulia SiporinRussell SjaardaIna SlutskyDavid SmalleyElizabeth SmithGregory SmithJoseph SmithJosephine SmithJulie SmithRita SmithTerin S. SmithNancy L. SnyderMegan SommerStephanie SorensenDoris SoutoRichard L. SpahnDavid SpathLinda SpathDeann SpeltzJerry SpencerGayle SpringerChristine St. OngeMary StanleyHeather StantonVasilike StavropoulosJoyce SteadhamMary S. StecMark StenbergRobert StephensonWilliam SternJoyce SternbergKatherine W. StevensCheryl StibelBronwen StimpertEllie StoneMaureen StoneGregory StonerLaura P. StromDana StrothmanJanet StubbsDennis StuitMaryalice StuitBrenda SturgeonPatricia SublettMichael SublettWilliam SuretteMargaret SuretteSandra SussmanDavid Sweatt
Mary SwiftChristopher TashjianTracy TataJennifer Bishop TaylorHoward TechauMargaret TechauDick TedfordPat TedfordMarie TemminkRobert ThatcherPatricia ThayerAlice TheobaldTeresa ThomaeConnie ThomasGloria J. ThomasRobert ThomasShirley ThomasBrenda ThompsonDillard ThompsonJoanne A. ThompsonWIlliam ThompsonCheryl ThoresonRaghavendra TikotMarjorie M. TongueMiorky TorresSusan TraubNancy TrentRonald TrippNancy B. TuckerRose TuozzolaCarrie TurcoGeorge TurkKenneth TurnerMarla TurnerTed TylaskaJoyce TylerDennis UnholzCheryl UteggCurt UteggNoubar VanlianPatricia VaughanCathy VidnanskyGinny VigrassDiana VodjanskyGinger Von AchenVon Drehle CorporationMary Beth WadeCandace WalkupMaureen A. WalshTina Walters
Lawrence WaltonMary WaltuckKathy WargoKathleen WarrenAnnette WashburnRobert WassallJanet WeberDouglas Weeks Margaret WeissRuth WelchElizabeth WelshLynn WendellJane WengerLauren C WertLinda WeselohEthel C. WheelerMaria WhistonRachel WhiteAlice WhynaughtJane WillWilliam WillisJennifer WilsonScott WilsonWilliam WingSandra Winter, Ph.D.Janice WitkowskiKarin M. WoesteJan WoglomBonnie P. WolfSondee WolffDiane Dee WoodCynthia WoodsJoe WoodruffMary WoodsonEsther WorthingtonMichael WynJane XiquesYiwen XuDavid B. YostLinda ZacariasCristina ZanazziGeraldine L. ZarboSusan ZemanYifu ZhuScott W. ZieglerWendy ZieglerDelores H. ZimmermanMildred Zingone
— 19 —2018 Annual Report
Honoree name: All Facial Pain Sufferers Donor name: Kay E. Grim
All TN Sufferers Linda & Ken Burnham Raymond McCord
All Who Suffer Donna Todd
Jennifer Agbay Ms. Jenna Pierce
Annie Alexander Hazel Dukes
Dr. John Alksne Linda Perdue
Dr. Nicholas Barbaro Jane D. Andersen, RN
Dr. Douglas Barrett Patricia Mares-Mischke
Helen Carter Candace & Wayne Beach
Cindy Bennett Claude & Jean Aldridge
Gracen Berschauer Joylynn Berschauer
Jeff Bodington Helen Bodington
Frances Booth Patrick N. Hogan
Kayla Brewster Zachery Nielson
Jill Brough Helen Brough
Dr. Jeffrey Brown Lonnie Capon Arlene & Harvey Cherner
Philanthropic Fund Janet McConnell
Dr. Ken Casey Margaret & Donald J. Hansen
Carolyn Chisolm Faye & William Self
Joyce Chunias Joyce Chunias
Catherine Costello Janet L. O’Neil
Beth DeBaugh Amy Turner
Cindy Ezell Janet Gardner Wayne Ezell
Dr. Melvin Field Kurt Meehan
Fight for a Cure Ms. Cristina Kantz
Kristine Gaganidze James R. Altorfer
Dhun Gandhi Freddy Gandhi
Peggy Glass Betty D. Luckett
Dr. Harvey Greenberg Ivy Lutzker
Shirley Harris Shirley & Don Harris
Kathy Hayes Helen J. Nicholson
Jim & Andrea Hodkey & family The Leone Family
David Julian & Heather Howard Marcy Kulakow Skyler Lewis Michael Saracco Steven Saracco
KC Support Group Kathleen Warren
Karl Kroeppler Vincent Rinehart
Carlin Lagrutta Carole Green Kimberley Green Gibson
Suzanne Lang Ashley Sandvi
Dayna Maggio Lawlor Richard Maggio
Dr. John YK Lee Jean Newlin
Gaynelle Lentz Nicole Lentz
Dr. Mark Linskey Kathleen Mendes Andy Petitjean
Jo Marie Margiotta Giovina Margiotta
Audrey Martinuzzi Audrey Martinuzzi
Medical Advisory Board Faith Laning
My daughter Sandra Brendel
Pam Neff Rohn Harmer & the Tampa Bay
Support Group
Lars Okeson Cynthia L. Okeson
Jane Overstreet Jane & Larry Overstreet
Barbara Paolozzi Barbara & Tony Paolozzi
Dr. Rob Parrish Tatiana & Joe Christian
Claire Patterson Ida R. Ashby
Dr. Pertes at the Orofacial Clinic Terry Moore
Kelley Pollard Friends at Amerimed Inc Douglas Weeks
Susan Raphaelson Rosalind & Richard Kaufman
Laura Smith Romney Shannon Reich
Sarah Sabold Joseph P. Scheuchenzuber
Dr. K. Singh Sahni Josephine Knight
Abhay Sanan, MD Linda Faye
Kevin Schroeder Sherry Schroeder Pat Yendra
Maryann Sgarlata Susan Sgarlata
Steven Sirken Jerome Sirken
Jacob J Smith Joseph Smith
Dr. William Smith Alberta Abbott
Dr. Michael Stechison Mildred & Richard Smith
Madeline Swist Mary Krell
Tiffanie Tagner Cathy Kimball
Dr. John Tew Mona W. Marple
The AD/TD Group Sarah Donly, RN, LMT
The Facial Pain Association The Support Group of Kansas City
TN Sufferers of Detroit & SE Michigan Genevieve Lenda
TN Warriors, like me Anonymous
Kathleen Warren Claude & Jean Aldridge
Nicole Wiemer Karen Griffin
Kenzie Winslow Mr. Floyd Winslow, Jr
Marisa Witherspoon Gretchen Schultz
Susan Wolf Leo Sprecher
Amity Zepeda Mrs. Tracy Angold
Honorary Tributes 2018
— 20 —Facial Pain Association
Honoree name: Donor name:
Gladys Addison Cynthia Johnson Hall
Alma Amey Mary E. Mattioni
Flora Ardito Marianne Ardito
Frank & Muriel Borello Patricia Foggin
William A. Bauman Jean F. Bauman
Judy Borne Nancy Rogers
Catherine Brown Joseph Smith
Grant Carlson Priscilla L. Carlson
Leslie Todd Corliss Faye Ellar Robert Grey
Ramona Cornejo Bill Cabral
Cynthia Cornelius Olivia Hinds Kevin King Jeff Roth
Mary Cuervo Mary Lynne Cuervo Arlene DeFrances Tony Longo
John DeMunter Catherine M. De Munter
Bessie Elledge Loretta Lockett
Stevan Farris Kathleen Frew
Ann Geishecker Paul Geishecker
Jane A. Goodin Robert L. Goodin
Dr. Steven Graff-Radford Bahareh Safaie, DDS
Lewis & Mary Green Delores G. Williams
Lucille Guith Tim Guith
Mary & Ernest Healey Ann H. Toole
Viola (VI) Rose Szoke Hill Ken Bozick Sandye Aldridge Dunlap Alison McCrary
Marilyn Hoxie Maureen E. Muck
Emma Hutyra Kenneth Hutyra
Thomas Ichien Joanne Gerstle Susan Miyake-Terhune
Brian Jackson Stanley Ashworth Monica Hodgson Peter Kearney Cynthia MacWilliam Christine Vergilio
Dr. Peter Jannetta Mary Ann Grace Marilyn Lanctot Vicki & Michael Logan Claire W. Patterson Mark Linskey, MD
Connor Joos Elena Joos
Durlin Keller Basalt Trade Associates Crossland
Richard Kohley Donna Kohley
Nicke T. Kroslow Carol Kroslow
Ray Lambrecht Mallory MacIsaac
Marguerite Lapointe Norma Lapointe
Herbert Levin Rochelle Levin
William Lodico Joan F. Lodico
Susan Mary Linton Valerie Barton
Charlotte McLaughlin Jessica Clark Emily Cogley Jessica Morgan Jessica Skirvin Kat & Jerry Sterndale William Williams
Corie Murdoch Jackie & Franklin Paulson
David D Murdoch Daniel Murdoch
Dawn O’Malley Ethel M. O’Malley
Nancy Mitchell Bob Mitchell
Estelle Moskowitz Jean LaBossiere
My Folks who were there for me Judith A. Libbey
Ben Newman Ellen Newman
Mary Jane Norton Teri L. Barrett
Michael O’Brien, Statesman Cheryl Clark Jordan Kohl Miles Varghese
Ed Opengart Fran Opengart
Harvey Parker Jane Packer Gerber
Jerline Peters Connie Thomas
Patricia Price Guy Price
Gary Redwine Claude & Jean Aldridge RAMS John Rolfe
David Reibman Alison & Leo Rosenberg
Lin Hyland Rich John Fehr
Pat Robb Jim Zook
Rossi Maya EdmondsonEffie S. Roth Helen I. Roth
Lawrence Ruether Jonna Bowen Debbie Matthys
Caroline Scarlett Laura Hillis
Rose Molinoff Seltzer Susan E. Seltzer
Ruth Shelton Suzanne & Alan Czachowski
Gina Simon Linda M. Bennethum
Russell Sparks Linda Nadeau Jeanette Sparks
Henry & Loretta Struzinski Margaret M. Prietz
Grace Timblin Charles E. Timblin, Jr.
Irma Tonon Margaret Tonon
Douglas Tongue Marjorie M. Tongue
Marion Trehulb Claire Waller
Norma Wassall Robert Wassall
Judy Watson Linda Branch Scott Pieratt
Dorothy Willis Dorothy Rainwater, RN
Mina Bialosky Wirtshafter Cita Strauss
Elizabeth “Betty” Ulricksen Roxanne Antonation Jeanette Praetorius Cameron Richard Nancy Richards Rocky Mountain
Association of Geologists Gerald Rothstein
Memorial Tributes 2018
— 21 —2018 Annual Report
• Become a member
• Start or attend a support group in your area
• Raise funds on Facebook or through a peer-to-peer platform (like Crowdrise)
• Make a donation
• Read and share materials available in our FPA Journal or posted on our website
• Attend our National Conference in November
• Social media
Interact with other patients and their loved-ones
Share your story
Help spread the word about facial neuropathic pain like trigeminal neuralgia
What you can do to help in 2019…
FPA NATIONAL CONFERENCE
November 2-3, 2019San Diego, CA
facepain.org22 SE Fifth Avenue, Suite D
Gainesville FL 32601800-923-3608
Connecting patients, supporters and medical professionals