efmn 2013 annual report

A world where people with seizures realize their full potential

2013 Annual Report

EpilepsyFoundationof Minnesota

A WORLD WHERE PEOPLE WITH SEIZURES REALIZE THEIR FULL POTENTIAL 3

Dear Friends:

2014 will mark the Epilepsy Foundation of Minnesota’s (EFMN) 60th anniversary of helping peoplewith seizures realize their full potential. What can we do in the next 60 years?

We came a long way in 2013, with a courageous Big Ten college footballcoach willing to stand up to stigma, sparking a national movement thatpropelled thousands of people to say “no” to stigma. We will rise aboveseizures in the next 60 years!

The Foundation is rapidly growing to support the 60,000 people in MN andND with epilepsy. This report shares our impact and financial information, aswell as personal stories from people with epilepsy.

In 2013, we served over 127,000 people (an increase of 26% from 2012)through programs like Seizure Smart Schools, where 5,400+ students/schoolpersonnel learned how to respond to a seizure. The Stroll for Epilepsy hit anall-time attendance record of 3,400 participants!

New funding from an Otto Bremer grant allowed us to expand programmingin West Central MN, and our Information & Referral cases reached the highestlevel in three years (216 cases last fall alone). Our public awareness efforts areinviting more people into the Foundation’s programs and services.

Together with our Board of Directors, we will continue our growth byembarking on a new, three-year strategic plan. Thank you for supporting theFoundation as we move into the future as a passionate, innovative, leadingand financially sound organization.

Best,

Brett Boyum Vicki KopplinPresident,Board of Directors Executive Director

2 A WORLD WHERE PEOPLE WITH SEIZURES REALIZE THEIR FULL POTENTIAL

Our Mission:

The EpilepsyFoundation ofMinnesota leadsthe fight to stopseizures, find acure andovercome thechallenges createdby epilepsy.

Our Vision:

A world wherepeople withseizures realizetheir full potential.

About Epilepsy

• Epilepsy, also known as a seizure disorder, iscommon – 60,000 people in our communityhave epilepsy. Epilepsy affects more Americansthan multiple sclerosis, cerebral palsy, musculardystrophy and Parkinson’s disease combined.

• While it is estimated that one in 26 Americanswill develop the seizure condition in theirlifetime, current treatments for epilepsy do notwork for more than three out of 10 peoplediagnosed -- leaving many Americans with noor inadequate control over their daily seizures.

2013 By The Numbers

EDUCATE

Seizure Response Training:4,371 people across MN and ND

Conferences & Workshops:630 people attended educational events

Seizure Smart Schools Training:5,483 students/school personnel

CONNECT

Peer Groups, Shining Stars & Family Events: 2,306 people connecting with others

Website Traffic:79,727 average monthly pageviews; 5,986 average monthly unique visitors

EMPOWER

Advocacy:3,977members of our advocacy group

Stroll for Epilepsy: 3,400 walkers in five locations

Volunteers:675 people giving their time

TOTAL PEOPLE SERVED BY EFMN*127,768 across MN and ND

*through these, and other programs not listed

EpilepsyFoundationof Minnesota

Board of DirectorsBrett Boyum, PresidentAnn S. Kelly Jones, Past President

Tim Gallagher, Vice President

Elizabeth Beastrom,Treasurer

Kari Rosand Scanlon,Secretary

Members At-LargeJason Engkjer, LegalCounsel

Mike BrittenTabitha FieldsMarcus FischerBrandon MegalDeb MeyerMike MurrayWendy OsterbergJim SilburnTom SpiczkaJessica StoltenbergTrudi TryslaChris TuroskiRandy UnzickerBill Walsh

Designated MembersMark Lenhardt, West Central MN

Josh Malnourie, EasternND & Northwestern MN

Tess Sierzant, ProfessionalAdvisory Board Chair

Special thanks to ourboard members whocompleted their term in2013Nina GravesMichael GonzalesDave QuealyJoy Rohwer

Professional AdvisoryBoardTess Sierzant, MS, RN,ACNS-BC, CNRN; Chair

Anne Barnwell, CBIS, CPRP Jeannine Conway, PharmD, BCPS

Armantina Espinosa, MD Timothy Feyma, MD Miguel Fiol, MD Douglas Heck, PhD Thomas Henry, MD Ilo Leppik, MD Donna McKenny, PHN, LSN, MEd

Katherine Nickels, MDPatricia Penovich, MD Kathleen Rieke, MD Frank Ritter, MD Joanne Rogin, MD Teresa Tran, MD

Camp Oz:

“Going to Camp

Oz was such a

wonderful experience

for the girls, especially

Alex. She had always

wanted to go to camp,

but Eric and I were so

nervous about sending

her to a regular camp.

Now after Camp Oz, we

are more confident that

she can go to camp. She

came home more

independent and with

more confidence in

herself. We can’t thank

you all enough for this

opportunity!”

- Camp Oz parent

The Foundationexperienced significantgrowth in 2013:

• EFMN served morepeople in 2013 than everbefore – over 127,000people

• The Stroll for Epilepsy hitan all-time attendancerecord of 3,400participants in fivelocations

• The Annual Gala raisedover $190,000, includingsupport for Camp Oz, aswe celebrated its 30thanniversary

• EFMN received the mostmedia coverage in its 60year history

Ethel Marx

“I was encouraged to keep my [epilepsy]diagnosis ‘secret’ for the first 25 years, whichwas very difficult. Thank heavens now thatwe have EFMN to give us the information weneed to make informed choices anddecisions. It is the level of acceptance that isas important to me, as is the level of control.Thank you for all you do, and keep up thegood work.”

- Ethel Marx Creative Arts Program participant

Alyce SalaTenna:

“I'm a 28 year-old female whohas endureduncontrolledtonic clonicseizures for thelast two years.Somehow I'vemanaged to keepwork as anenvironmentalscientist, and alsorun the Chicagomarathon to raisemoney and

awareness for the Epilepsy Association ofWestern Australia. I wanted to congratulateyou on your hard work and enthusiasm inbattling the stigmas for epilepsy all the wayfrom Perth, Western Australia.”

- Alyce S. who saw an EFMN epilepsy

awareness article online

WhoWeServe

A WORLD WHERE PEOPLE WITH SEIZURES REALIZE THEIR FULL POTENTIAL 54 A WORLD WHERE PEOPLE WITH SEIZURES REALIZE THEIR FULL POTENTIAL

Supporting People withSignature Programs

The unpredictability of seizurespresents challenges in daily life. Canyou imagine your first day of school,unsure if you will have a seizure? Orhoping a seizure doesn’t occur duringa job interview? EFMN supportsmarathon runners, CEOs of Fortune500 companies, kids in classrooms andpeople who deal with this unknownevery day. These people define courageand the Foundation offers supportthrough the following programs:

Educate > Connect > Empower

Conferences: 630 people were educated at twoconferences and four workshops.

Events and discussion groups: 2,006 peopleacross MN & ND connected for support.

Advocacy: 300+ people are members of ouradvocacy group.

Seizure Recognition & Response Training:4,371 people received this free training.

Information & Referral Program: 594 peoplereceived specific resources and guidance.

Camp Oz: 108 campers enjoyed a safe campingexperience.

Seizure Smart Communities: 19 ruralcommunities can better support people withepilepsy.

Shining Stars: 306 youth with epilepsy arecelebrated and connect with others.

Creative Arts: nearly 100 talentedartists/writers/performers contribute to thisprogram annually.

Seizure Smart Schools: 5,483 students/schoolpersonnel were educated in 2013.

Stroll for Epilepsy: 3,400 attended walks in fivelocations.

EFMN’s Programs

Creative Arts:

“Thank you for

letting me participate [in

the Creative Arts

Program showcase]. It’s

difficult to explain to

people what my song is

about. Last night was

great; it felt like others

were in the same

strange world I live in.

They understood the

emotional roller coaster

we live in with epilepsy.”

- Creative Arts

Participant/Singer

Seizure Recognition &

Response Training:

“Thank you for

presenting at our staff

workshop. It is almost a

month later and I still

hear comments from

staff about how much

they learned and

enjoyed your

presentation.”

- Mykkanen F.

The Impact of Giving


Jess Parizek

“I somehow stumbled upon information aboutthe Midwest Seizure Smart Conference, anddrove up from Iowa. I am beyond blessed to havemet many families and heard their inspirationalstories. I came home with an even more sense ofEpilepsy Foundation vs. the world, we can do it!

-Jess P.

Congratulations to the 2013 ElamBaer & Janis Clay EducationalScholarship winners:

Who We Serve $2,000 Seizure Smart Schools educational

materials for one year

$1,700 Sends one child to Camp Oz

Provides transportation to $1,000 advocates statewide for

Epilepsy Day at the Capitol

$700 Educates one classroom through Seizure Smart Schools

$225 Supports one child in the Shining Stars program

Provides free attendance for $60 someone with epilepsy to a

conference

$30 Educates one child through Seizure Smart Schools

AbbyLarson

Julie Curley

Ben Burk

Colton MenkJose Alvillar

MeghanMurname

Rachel Stych

RyanStenzel

WilliamMcMillan

BrookeDalueg

Social Enterprise:

The Foundation proudlyowns and operates allaspects of its Used Clothingenterprise, employing 30people between St. Cloudand St. Paul. This programrecycles unwanted clothingand household items;100% of the proceedsdirectly support programsand services.

Revenue

Individuals $536,020Corporations & Foundations $202,979Special Events $438,931 Program Fees $28,224 Investments $112,957 Income from Exchange Transactions $444,327

Total Revenue $1,763,438

Expenses

Salaries and Benefits $1,003,733Printing/Postage/Advertising $146,573Supplies $107,595 Program Expenses $159,667 Occupancy/Admin $97,879 Prof fees, Other $155,396

Total Expenses $1,670,843

2013 Financial Information


Stronger through partnership

Strong partnerships in our community bring themission and vision of EFMN to new levels. TheFoundation’s continued partnership with GopherAthletics in 2013 impacted more people than

ever before:

• Brought seizure first aidand epilepsy awareness toover 50,000 football fans atthe 2nd annual “Go-pherEpilepsy Awareness” footballgame.

• Provided 2,000 freetickets to people impactedby epilepsy after a localmedia report highlightedstigma.

• Provided Jerrysota t-shirtsand sparked a nationwidemovement of pride andawareness.

“The University's partnership with the

Epilepsy Foundation of Minnesota makes

me very proud. As the state’s only

land-grant university, our successes must be

measured not only by results on the field

and in our classrooms and laboratories, but

also by the positive effects we have on

Minnesotans’ lives and communities. Coach

Jerry Kill's and Gopher Athletics' strong ties

and commitment to the Epilepsy

Foundation exemplify this spirit of

collaboration.”

– Eric W. Kaler

President, University of Minnesota

The Impact ofGiving

Cash and Cash Equivalent $1,937,840 Property and Equipment, net $122,724

Total Assets $2,060,564

Total Liabilities $209,324 Total Net Assets $1,851,240

Total Liabilities & Net Assets $2,060,564

29%

24%16%

14%

17%

Functional Expenses:Fundraising

Administration&Management

Programs that Empower

Programs that Educate

Programs that Connect

EFMN thanks Gopher Athletics, Gopher Sports,Coach Jerry & Rebecca Kill and the Universityof Minnesota for helping people with seizuresrealize their full potential.

Special thank you to all ofour Corporate Partnersincluding:*Corporate Partners listed supported EFMN in

2013 with contributions $5,000+

Allina Health System

Crafts Direct

Gillette Children’s SpecialtyHealthcare

Johnson & Johnson

Lexus of Maplewood

Lundbeck, Inc.

Mayo Foundation for MedicalEducation and Research

Medtronic

Minnesota Epilepsy Group

Preferred One

SpeedStop

UM Physicians / MINCEP

Upsher-Smith Laboratories, Inc.

OurCorporatePartners


EFMN is looking forward to making more stridesin 2014, as we expand our reach in MN andeastern ND:

• Expanding our Seizure Smart SchoolsprogramThrough community partnerships withcorporations, foundations and individuals,EFMN will expand the Seizure Smart Schoolsprogram in classroom, school and district levels.Significant investment through the “ChasingDreams” Coach Kill Fund will support thisgrowth.

• Awareness intoactionIn 2013, theFoundationlaunched its firstpublic awarenesscampaign. Bymaking awarenessa program withinthe Foundation, wewill work tirelesslyto engage the60,000 people inMN and easternND with epilepsyand educate thepublic.

• Implementation of seniorsprogrammingAs we prepare for the “grayingof America” when the babyboom generation turns 65,older adults will become thelargest segment of thepopulation diagnosed withepilepsy. EFMN will offer newprogramming to increasesupport for this group and theircaregivers.

Lookingto the Future

Seizure Smart

Schools:

“Two days after we did

this training, the 10

month-old baby of one

of the teachers that did

the training had a

seizure at our child care

center, and we felt very

prepared for the

situation thanks to your

training.”

-Seizure Smart Schools

participant

Randy & Paulette PehlingPatricia Penovich, M.D. &Gerald Moriarty, M.D.

Susie PersonJim Poulter & Kim KindlerThea RentschlerDan & Chris RiceEric & Kathleen Rieke,M.D.

Frank Ritter, M.D.Thomas & Erin RueCory RyanDavid & Kari ScanlonWendy SedlacekJames ShaferTess Sierzant & JimHeimer

Jim & Sara SilburnPaul & Joan SkluzacekDeb SkoogCarl & Chris StampCynthia Starkweather-Nelson

Jessica & PhillipStoltenberg, M.D.

Steve & Julie StraussTimothy TalbotMark & Sandy TollefsonChris & Jessica TuroskiStewart WiddessSandra & John WynneAmerirpise FinancialMatching Gift Program

Border States ElectricCyberonicsEisai, Inc.Fredrikson & Byron, P.A.Governor’s Council onDevelopmentalDisabilities

Hugh J. AndersenFoundation

IBMLedge WealthManagement

Lutheran CommunityFoundation

Maguire AgencyMargaret Rivers FundMcGough ConstructionMinnesota VikingsChildren’s Fund

National ChristianFoundation of the TwinCities

Noran Neurological ClinicPeople's EnergyCooperative

Pfizer, Inc.PhRMA

Sarah Wilson SweattFund of the MinneapolisFoundation

TCF FoundationThrivent Financial forLutherans

TVI, Inc. (Savers)Toqua Park EpilepsyStrollers

UCB Inc.US BankWestonka Public SchoolIndependent SchoolDistrict 277

$500-$999

Anonymous (4)James & Lydia AlsdurfDavid AndersonPatricia AndersonSheryl AndersonCharles ArendSteven & Roberta BakerChristian BameDon & Lori BanghartAnnabel BavaudJeanne BeattieJerry & Kathleen BehneWayne BieniekJohn BollagPeter & Linda Borman Michael BrittenGerald BuchananSandra Byzewski

Michael CaputaPaul & Jane CashinDawn ChaseLori CheneyKeith & JeannineConway

Frank DigioiaMarilee DohertyJason & Sarah EngkjerArmantina Espinosa, M.D.Barbara FagerbergRhonna FerdigTabitha & Chris FieldsPaul FitzgeraldPhil & Jill GattoneKent & Mary GieseJerry & Vicky GriesJerod GustafsonBrian & Rachael HartEric HartmanSusan HathawayAmy Haugen

Aaron HawkinsonLoren & Ellen HerbstSusan HodgeJohn HoffmanDara Horner

David JacobsenConstance JeffersPam Jewson & PeterSwenson

Michael P. JonesJonell JonesMikel KellyMatthew KolbTim KunkelDustin & Jen LaValleyMark & Katie LenhardtVictor LoehrerTammy Lynk

Jonathan MaringPatrick & Robin Marushin,M.D.

John & JanetMcCutcheon

Leah McLean & BenGarbe

Nathan & Anna Milz,M.D.

Thank You


The Epilepsy Foundation

of Minnesota greatly

appreciates our donors

for their generous

support. This list

includes gifts of $250+.

Every effort has been

made to ensure

accuracy. If we have

made an error, please

call 651.287.2319.

$20,000+

Leah Broecker EstateThomas & PatriciaGrossman Family Fundof the MinneapolisCommunityFoundation

David Wasson EstateEpilepsy Foundation ofAmerica

Upsher-SmithLaboratories, Inc.

$10,000-$19,999

Anonymous (1) Allan & Theresa BergrenElaine & Gary JarrettFred C. and Katherine B.Andersen Foundation

Gillette Children’sSpecialty Healthcare

Lundbeck, Inc.Mayo Foundation forMedical Education andResearch

Otto Bremer FoundationThe Wasie Foundation

$5,000-$9,999

Anonymous (1) Lisa AndersonJanie & Michael Frost,M.D.

Coach Jerry & RebeccaKill

Brandon & StephanieMegal

Steven StoterauLarry WefringAllina Health SystemBP Products of NorthAmerica Inc.

Casey Albert T. O’NeilFund

Crafts DirectJohnson and JohnsonServices Inc

MedtronicMinnesota EpilepsyGroup

Lexus of MaplewoodNFL Alumni Inc.Preferred One

The HubbardBroadcastingFoundation

UM Physicians / MINCEP

$1,000-$4,999

Anonymous (1) Janel Anderson & CraigDowd

Bill & Janine AtwellBrett & Heather BoyumElam Bear & Janis ClaySandy & Barry Baines,M.D.

Elizabeth & TimBeastrom

Matthew & MaryBlissenbach

Jeffrey BoisvertMatt & Andrea BroklBeth BurlingameJohn & Audrey ColasantiRandy ColeKristin DavisMitch & Laurie DavisMargaret DoedenJeff DuncanJoe & Sue EschenbacherCharles & Estela FieldsMarcus & Wendy FischerTim Gallagher & JulieJohnson

Marsha GarnerKevin & Linda Goodno

Scott GrausnickNina & DavidGraves

James GriffithDenis Guenthner Jen HathawayLeslie HelouJerry & Cindy HinmanAnn & David JonesDavid & Julie JonesRobert & MerryaliceJones

John & Vicki KopplinGlen Littler Tom Keerl & Bennie LoroErik LundquistJoshua Malnourie &Mikal Kenfield

Susan MarvinDarrin & MichelleMaxwell

Paul & Lisa MeunierDeb MeyerThomas & SusanMielenhausen

Anne MooreTimothy O'Hara Lisa Paylor

Thank You

Michael KruseWilliam KucheraTerrence LagerlundJana Le Scherf Jennifer LawrenceRodney LeeJoseph LevyKaren LoeksMary LundquistJamie MacGregorBarb MagnusonTom MarekJudith MatonichRonald MaunuDonna McKennyRobert McLeodMichael MertensPaul MeyerSteve & Susan Meyer

Kendall MillerDavid & Suzanne Mills-Rittmann

Jeff MooreDenise MoseClair MrotekTamra MrotekJennifer Muller-YauchDaniel MurphyLinda MurphySean MurrayMichael & Nicole MurrayMichael Murray Sr.R E NelsonScott NickelsBill OliverSusan OlsonBill OrtellAnn Marie PattersonJeffery & Cindy PetersenCevin PetersenMatt & Dana PetersonRobert PetersonFrederick & JeanPfotenhauer

Brett PinkertonDavid & Karen PostmaPaul PrattRyan & Amanda PriebeRobert PurdyAnthony PykaDavid & Beth RaitDan RawleyJoe Reardon

James RegierJulie ReimerElizabeth RiseJoanne Rogin, M.D.Sara RohdeGreg RudNoelle RudeCindy SandersNicole SchauerCraig SchmitzDonald ShawMark SheffertDonovan SienkoDiana SimmsBridget SlusarekBenjamin SmithJane Soik ReedJohn SotebeerDolores SpeidelScott St. GeorgeJamie & Cindy SteffenDave StimpsonAnita StoltenbergMaurietta SurethJohn SvenkesonJeanne TheisLlyod ThomasonMartha ThurlowScott & Michelle TorborgSamantha TorgersonMiranda TrebeschDean UglemRandy & Amy Unzicker

Adrian & ElaineVanderwiel-Wirrell

Robert VavraCandace VegterKathleen WallBill WalshLaurel WatsonGary WeaverAnnie & Rodney WeilerJulie WeisbeckerJeff WellmanJake WendtDan & Heather WerdelJanet WhettamJennifer WickMark WickershamGary WidmerMelissa WilliamsJanet ReslerSusan TangenEugene WisakowskyPeter & Amy WoehnkerDale & Rochelle WohlersNancy WoldGregory Worrell, M.D.Randy & MichelleYoungdahl

Craig ZemkeJenni ZickertBirch Lake DentalCBRE Matching GiftProgram

Cornell, Kahler, Shidell &Mair, PLLP

CorTalent, LLCEdelman USAEideBaillyElcor Realty of Rochester,Inc.

Hawley Area United FundPediatric Therapy PartnersInc

Rochester Golf & CountryClub

Sauk Rapids SportsmanClub

Unified Theory, Inc

Michael MonsonRebecca MuellerLouanne MurphyMark & Lynn MyhraDave Rock & Rhea NelsonRock

Anne Uhde-PlattDana PollardDavid & Audrey QuealyJudith RasmussenJackie & Keivin ReiderDoug RewertsDean RichardsLisa RileyJohn Tobin & Gail RisseAndrew & Nicole RootStanley & JeannetteRosand

Bethany SandstadMatthew SchamrothDaniel ScherfRonald SchiferlGordon & Sarah SchmidtDenise SchnettlerPatrick SchwartzDave ScovilHeeJune & Cheolsu Shin, M.D.

Ross SimpsonJudy & Elson So, M.D.Trudi Trysla & DavidSchultz

Michele WagnerAmy WanistromBarbara Westgor

Mike & Mary WigginsAmherst H WilderFoundation

Apple Minnesota LLCBarna, Guzy, & Steffen,Ltd

Buffalo Lake CommunityFund

Coon Rapids ChryslerDodge Jeep Ram

Devries Manufacturing IncDrew's Bar and GrilleFraternal Order of EaglesFridley Lions ClubGodfather’s Pizza – FargoHiway Federal CreditUnion

Honest-1 Auto CareIconic Images I, LLC DBAVenture Photography

Jim & Denise Potter Fundof Central MNCommunity Foundation

J&J Calibration ServiceKathy & Tom MillerFoundation

Kohl's

Menasha CorporationFoundation

Mike & Linda FitermanFamily Foundation

Minneapolis Clinic ofNeurology

Minnesota SoccerAcademy

North CountryConstruction andRentals Inc

Rahr Malting Co.St Cloud Optimist ClubSt. Cloud ScheelsSt. Martin CommercialClub

St. Martin LionsTennant FoundationU.S. Bancorp MatchingGift Program

$250-$499

Anonymous (3)Richard AndersonPeter and Diane AngeloDelores AtwellElaine AtwellPaul BaileyHannah Baines & KeithAsmussen

John BankenMolly BarthJason & Melissa BeckerThomas & Judith BeniakEric & Jennifer Beran

Michelle BilottaDavid BirkhoferRocklin BranderhorstJeffrey BrittonDawn BrockmanMonica CarlsonTara ChapaSteve & Amy ClayLaurie ColbeckJulia ColeyBlair CollinsTony ComptonJen CrowPatrick CruikshankKevin CruikshankThomas DolphinKim DudgeonJanelle DuffeeAklilu DunlapGary EilefsonKelsey FaustMilton FerrisJohn GordonMike GunnDeborah HadleyMike & CarolineHarrer

Mark & AmyHassenstab

Roger & KathrynHaugen

Jessica Hauser Jennifer HawleyMichele Heintz

Darren & Nichole HesterJoe HigginsJenny HiltnerJessica HiveleyWilliam HopkinsJohn HoranJean HutzlerNeil HutzlerSteve IrelandPatricia JansenMargaret JenkinsSheila JenkinsHeather JohnsonBrian JonesEdward & RebeccaJorgenson

Thomas KellinDennis & Kari Knapp

Thank You


Thank You

Our Goals

EDUCATE the community about seizures to

reduce the stigma surrounding epilepsy. EFMN

has nationally-recognized educational programs.

CONNECT people with epilepsy to others, and to

resources. Epilepsy impacts entire families,

workplaces and classrooms and EFMN offers

programs that connect people.

EMPOWER people living with epilepsy. Managing

social challenges, medication side effects and

discrimination are mitigated by programs that

restore a sense of control.

Epilepsy Foundation of Minnesota1600 University Avenue West, Suite 300 | St. Paul, MN 55104www.efmn.org

efmn 2013 annual report

Documents

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communityhave epilepsy

daily seizures

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seizure condition

seizure disorder