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A world where people with seizures

realize their full potential

2013 Annual Report

Epilepsy Foundation of Minnesota Our Mission: The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.

About Epilepsy

2013 By The Numbers

• Epilepsy, also known as a seizure disorder, is common – 60,000 people in our community have epilepsy. Epilepsy affects more Americans than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.


• While it is estimated that one in 26 Americans will develop the seizure condition in their lifetime, current treatments for epilepsy do not work for more than three out of 10 people diagnosed -- leaving many Americans with no or inadequate control over their daily seizures.

Our Vision: A world where people with seizures realize their full potential.

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: 3,977 members of our advocacy group Stroll for Epilepsy: 3,400 walkers in five locations Volunteers: 675 people giving their time


Dear Friends: 2014 will mark the Epilepsy Foundation of Minnesota’s (EFMN) 60th anniversary of helping people with 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 football coach willing to stand up to stigma, sparking a national movement that propelled thousands of people to say “no” to stigma. We will rise above seizures in the next 60 years! The Foundation is rapidly growing to support the 60,000 people in MN and ND with epilepsy. This report shares our impact and financial information, as well 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/school personnel learned how to respond to a seizure. The Stroll for Epilepsy hit an all-time attendance record of 3,400 participants! New funding from an Otto Bremer grant allowed us to expand programming in West Central MN, and our Information & Referral cases reached the highest level in three years (216 cases last fall alone). Our public awareness efforts are inviting more people into the Foundation’s programs and services. Together with our Board of Directors, we will continue our growth by embarking on a new, three-year strategic plan. Thank you for supporting the Foundation as we move into the future as a passionate, innovative, leading and financially sound organization. Best,

*through these, and other programs not listed

Brett Boyum President,Board of Directors



Vicki Kopplin Executive Director

Board of Directors Brett Boyum, President Ann S. Kelly Jones, Past President Tim Gallagher, Vice President Elizabeth Beastrom, Treasurer Kari Rosand Scanlon, Secretary Members At-Large Jason Engkjer, Legal Counsel Mike Britten Tabitha Fields Marcus Fischer Brandon Megal Deb Meyer Mike Murray Wendy Osterberg Jim Silburn Tom Spiczka Jessica Stoltenberg Trudi Trysla Chris Turoski Randy Unzicker Bill Walsh Designated Members Mark Lenhardt, West Central MN Josh Malnourie, Eastern ND & Northwestern MN Tess Sierzant, Professional Advisory Board Chair

Epilepsy Foundation of Minnesota Special thanks to our board members who completed their term in 2013 Nina Graves Michael Gonzales Dave Quealy Joy Rohwer Professional Advisory Board Tess 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, MD Patricia Penovich, MD Kathleen Rieke, MD Frank Ritter, MD Joanne Rogin, MD Teresa Tran, MD



EFMN’s Programs

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!”

Supporting People with Signature Programs

Ethel Marx “I was encouraged to keep my [epilepsy] diagnosis ‘secret’ for the first 25 years, which was very difficult. Thank heavens now that we have EFMN to give us the information we need to make informed choices and decisions. It is the level of acceptance that is as important to me, as is the level of control. Thank you for all you do, and keep up the good work.”

The unpredictability of seizures presents challenges in daily life. Can you imagine your first day of school, unsure if you will have a seizure? Or hoping a seizure doesn’t occur during a job interview? EFMN supports marathon runners, CEOs of Fortune 500 companies, kids in classrooms and people who deal with this unknown every day. These people define courage and the Foundation offers support through the following programs:

Educate > Connect > Empower Conferences: 630 people were educated at two conferences and four workshops. Events and discussion groups: 2,006 people across MN & ND connected for support. Advocacy: 300+ people are members of our advocacy group. Seizure Recognition & Response Training: 4,371 people received this free training. Information & Referral Program: 594 people received specific resources and guidance.

- Ethel Marx Creative Arts Program participant

Camp Oz: 108 campers enjoyed a safe camping experience. Seizure Smart Communities: 19 rural communities can better support people with epilepsy. Shining Stars: 306 youth with epilepsy are celebrated and connect with others. Creative Arts: nearly 100 talented artists/writers/performers contribute to this program annually. Seizure Smart Schools: 5,483 students/school personnel were educated in 2013.

Alyce Sala Tenna: “I'm a 28 yearold female who has endured uncontrolled tonic clonic seizures for the last two years. Somehow I've managed to keep work as an environmental scientist, and also run the Chicago marathon to raise money and awareness for the Epilepsy Association of Western Australia. I wanted to congratulate you on your hard work and enthusiasm in battling the stigmas for epilepsy all the way from Perth, Western Australia.” - Alyce S. who saw an EFMN epilepsy awareness article online

Who We Serve The Foundation experienced significant growth in 2013: • EFMN served more people in 2013 than ever before – over 127,000 people • The Stroll for Epilepsy hit an all-time attendance record of 3,400 participants in five locations • The Annual Gala raised over $190,000, including support for Camp Oz, as we celebrated its 30th anniversary • EFMN received the most media coverage in its 60 year history

Stroll for Epilepsy: 3,400 attended walks in five locations.

- Camp Oz parent





Who We Serve Creative Arts:

Jess Parizek “I somehow stumbled upon information about the Midwest Seizure Smart Conference, and drove up from Iowa. I am beyond blessed to have met many families and heard their inspirational stories. I came home with an even more sense of Epilepsy Foundation vs. the world, we can do it!

“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.”

-Jess P.

Congratulations to the 2013 Elam Baer & Janis Clay Educational Scholarship winners:


$1,700 Sends one child to Camp Oz Ben Burk Abby Larson Julie Curley

$1,000 Meghan Murname

Colton Menk

- Creative Arts Participant/Singer

Educates one classroom through Seizure Smart Schools


Supports one child in the Shining Stars program

Jose Alvillar

Rachel Stych

Ryan Stenzel


Brooke Dalueg

Provides transportation to advocates statewide for Epilepsy Day at the Capitol





Seizure Smart Schools educational materials for one year

The Impact of Giving 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.

Provides free attendance for someone with epilepsy to a conference Educates one child through Seizure Smart Schools A WORLD WHERE PEOPLE WITH SEIZURES REALIZE THEIR FULL POTENTIAL


The Impact of Giving

Stronger through partnership


Strong partnerships in our community bring the mission and vision of EFMN to new levels. The Foundation’s continued partnership with Gopher Athletics in 2013 impacted more people than ever before:

Individuals Corporations & Foundations Special Events Program Fees Investments Income from Exchange Transactions

• Brought seizure first aid and epilepsy awareness to over 50,000 football fans at the 2nd annual “Go-pher Epilepsy Awareness” football game. • Provided 2,000 free tickets to people impacted by epilepsy after a local media report highlighted stigma. • Provided Jerrysota t-shirts and sparked a nationwide movement of pride and awareness.

EFMN thanks Gopher Athletics, Gopher Sports, Coach Jerry & Rebecca Kill and the University of Minnesota for helping people with seizures realize their full potential.




Total Revenue Cash and Cash Equivalent Property and Equipment, net Total Assets

$536,020 $202,979 $438,931 $28,224 $112,957 $444,327

Functional Expenses:

– Eric W. Kaler President, University of Minnesota

Programs that Educate

$1,003,733 $146,573 $107,595 $159,667 $97,879 $155,396


Total Expenses


$1,937,840 $122,724

Total Liabilities Total Net Assets

$209,324 $1,851,240


“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.”

Salaries and Benefits Printing/Postage/Advertising Supplies Program Expenses Occupancy/Admin Prof fees, Other

Total Liabilities & Net Assets



Programs that Connect


Social Enterprise: The Foundation proudly owns and operates all aspects of its Used Clothing enterprise, employing 30 people between St. Cloud and St. Paul. This program recycles unwanted clothing and household items; 100% of the proceeds directly support programs and services.

16% 14%


2013 Financial Information

Administration & Management

17% Programs that Empower



Looking to 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


EFMN is looking forward to making more strides in 2014, as we expand our reach in MN and eastern ND:

*Corporate Partners listed supported EFMN in 2013 with contributions $5,000+

• Expanding our Seizure Smart Schools program Through community partnerships with corporations, foundations and individuals, EFMN will expand the Seizure Smart Schools program in classroom, school and district levels. Significant investment through the “Chasing Dreams” Coach Kill Fund will support this growth. • Awareness into action In 2013, the Foundation launched its first public awareness campaign. By making awareness a program within the Foundation, we will work tirelessly to engage the 60,000 people in MN and eastern ND with epilepsy and educate the public.


Our Corporate Partners

Special thank you to all of our Corporate Partners including: Minnesota Epilepsy Group Lexus of Maplewood

Preferred One Allina Health System Lundbeck, Inc.

SpeedStop Crafts Direct

• Implementation of seniors programming As we prepare for the “graying of America” when the baby boom generation turns 65, older adults will become the largest segment of the population diagnosed with epilepsy. EFMN will offer new programming to increase support for this group and their caregivers.

Mayo Foundation for Medical Education and Research UM Physicians / MINCEP

Gillette Children’s Specialty Healthcare

Medtronic Johnson & Johnson

Upsher-Smith Laboratories, Inc.



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 Estate Thomas & Patricia Grossman Family Fund of the Minneapolis Community Foundation David Wasson Estate Epilepsy Foundation of America Upsher-Smith Laboratories, Inc.

$10,000-$19,999 Anonymous (1) Allan & Theresa Bergren Elaine & Gary Jarrett Fred C. and Katherine B. Andersen Foundation

Gillette Children’s Specialty Healthcare Lundbeck, Inc. Mayo Foundation for Medical Education and Research Otto Bremer Foundation The Wasie Foundation

$5,000-$9,999 Anonymous (1) Lisa Anderson Janie & Michael Frost, M.D. Coach Jerry & Rebecca Kill Brandon & Stephanie Megal Steven Stoterau Larry Wefring Allina Health System BP Products of North America Inc. Casey Albert T. O’Neil Fund Crafts Direct Johnson and Johnson Services Inc Medtronic Minnesota Epilepsy Group Lexus of Maplewood NFL Alumni Inc. Preferred One


The Hubbard Broadcasting Foundation UM Physicians / MINCEP

$1,000-$4,999 Anonymous (1) Janel Anderson & Craig Dowd Bill & Janine Atwell Brett & Heather Boyum Elam Bear & Janis Clay Sandy & Barry Baines, M.D. Elizabeth & Tim Beastrom Matthew & Mary Blissenbach Jeffrey Boisvert Matt & Andrea Brokl Beth Burlingame John & Audrey Colasanti Randy Cole Kristin Davis Mitch & Laurie Davis Margaret Doeden Jeff Duncan Joe & Sue Eschenbacher Charles & Estela Fields Marcus & Wendy Fischer Tim Gallagher & Julie Johnson Marsha Garner Kevin & Linda Goodno

Scott Grausnick Nina & David Graves James Griffith Denis Guenthner Jen Hathaway Leslie Helou Jerry & Cindy Hinman Ann & David Jones David & Julie Jones Robert & Merryalice Jones John & Vicki Kopplin Glen Littler Tom Keerl & Bennie Loro Erik Lundquist Joshua Malnourie & Mikal Kenfield Susan Marvin Darrin & Michelle Maxwell Paul & Lisa Meunier Deb Meyer Thomas & Susan Mielenhausen Anne Moore Timothy O'Hara Lisa Paylor

Randy & Paulette Pehling Patricia Penovich, M.D. & Gerald Moriarty, M.D. Susie Person Jim Poulter & Kim Kindler Thea Rentschler Dan & Chris Rice Eric & Kathleen Rieke, M.D. Frank Ritter, M.D. Thomas & Erin Rue Cory Ryan David & Kari Scanlon Wendy Sedlacek James Shafer Tess Sierzant & Jim Heimer Jim & Sara Silburn Paul & Joan Skluzacek Deb Skoog Carl & Chris Stamp Cynthia StarkweatherNelson Jessica & Phillip Stoltenberg, M.D.

Steve & Julie Strauss Timothy Talbot Mark & Sandy Tollefson Chris & Jessica Turoski Stewart Widdess Sandra & John Wynne Amerirpise Financial Matching Gift Program Border States Electric Cyberonics Eisai, Inc. Fredrikson & Byron, P.A. Governor’s Council on Developmental Disabilities Hugh J. Andersen Foundation IBM Ledge Wealth Management Lutheran Community Foundation Maguire Agency Margaret Rivers Fund McGough Construction Minnesota Vikings Children’s Fund National Christian Foundation of the Twin Cities Noran Neurological Clinic People's Energy Cooperative Pfizer, Inc. PhRMA

Sarah Wilson Sweatt Fund of the Minneapolis Foundation TCF Foundation Thrivent Financial for Lutherans TVI, Inc. (Savers) Toqua Park Epilepsy Strollers UCB Inc. US Bank Westonka Public School Independent School District 277

$500-$999 Anonymous (4) James & Lydia Alsdurf David Anderson Patricia Anderson Sheryl Anderson Charles Arend Steven & Roberta Baker Christian Bame Don & Lori Banghart Annabel Bavaud Jeanne Beattie Jerry & Kathleen Behne Wayne Bieniek John Bollag Peter & Linda Borman Michael Britten Gerald Buchanan Sandra Byzewski

Michael Caputa Paul & Jane Cashin Dawn Chase Lori Cheney Keith & Jeannine Conway Frank Digioia Marilee Doherty Jason & Sarah Engkjer Armantina Espinosa, M.D. Barbara Fagerberg Rhonna Ferdig Tabitha & Chris Fields Paul Fitzgerald Phil & Jill Gattone Kent & Mary Giese Jerry & Vicky Gries Jerod Gustafson Brian & Rachael Hart Eric Hartman Susan Hathaway Amy Haugen

Aaron Hawkinson Loren & Ellen Herbst Susan Hodge John Hoffman Dara Horner

Thank You

David Jacobsen Constance Jeffers Pam Jewson & Peter Swenson Michael P. Jones Jonell Jones Mikel Kelly Matthew Kolb Tim Kunkel Dustin & Jen LaValley Mark & Katie Lenhardt Victor Loehrer Tammy Lynk

Jonathan Maring Patrick & Robin Marushin, M.D. John & Janet McCutcheon Leah McLean & Ben Garbe Nathan & Anna Milz, M.D.



Thank You

Michael Monson Rebecca Mueller Louanne Murphy Mark & Lynn Myhra Dave Rock & Rhea Nelson Rock Anne Uhde-Platt Dana Pollard David & Audrey Quealy Judith Rasmussen Jackie & Keivin Reider Doug Rewerts Dean Richards Lisa Riley John Tobin & Gail Risse Andrew & Nicole Root Stanley & Jeannette Rosand Bethany Sandstad Matthew Schamroth Daniel Scherf Ronald Schiferl Gordon & Sarah Schmidt Denise Schnettler Patrick Schwartz Dave Scovil HeeJune & Cheolsu Shin, M.D.


Ross Simpson Judy & Elson So, M.D. Trudi Trysla & David Schultz Michele Wagner Amy Wanistrom Barbara Westgor Mike & Mary Wiggins Amherst H Wilder Foundation Apple Minnesota LLC Barna, Guzy, & Steffen, Ltd Buffalo Lake Community Fund Coon Rapids Chrysler Dodge Jeep Ram Devries Manufacturing Inc Drew's Bar and Grille Fraternal Order of Eagles Fridley Lions Club Godfather’s Pizza – Fargo Hiway Federal Credit Union Honest-1 Auto Care Iconic Images I, LLC DBA Venture Photography Jim & Denise Potter Fund of Central MN Community Foundation J&J Calibration Service Kathy & Tom Miller Foundation Kohl's

Menasha Corporation Foundation Mike & Linda Fiterman Family Foundation Minneapolis Clinic of Neurology Minnesota Soccer Academy North Country Construction and Rentals Inc Rahr Malting Co. St Cloud Optimist Club St. Cloud Scheels St. Martin Commercial Club St. Martin Lions Tennant Foundation U.S. Bancorp Matching Gift Program

$250-$499 Anonymous (3) Richard Anderson Peter and Diane Angelo Delores Atwell Elaine Atwell Paul Bailey Hannah Baines & Keith Asmussen John Banken Molly Barth Jason & Melissa Becker Thomas & Judith Beniak Eric & Jennifer Beran


Michelle Bilotta David Birkhofer Rocklin Branderhorst Jeffrey Britton Dawn Brockman Monica Carlson Tara Chapa Steve & Amy Clay Laurie Colbeck Julia Coley Blair Collins Tony Compton Jen Crow Patrick Cruikshank Kevin Cruikshank Thomas Dolphin Kim Dudgeon Janelle Duffee Aklilu Dunlap Gary Eilefson Kelsey Faust Milton Ferris John Gordon Mike Gunn Deborah Hadley Mike & Caroline Harrer Mark & Amy Hassenstab Roger & Kathryn Haugen Jessica Hauser Jennifer Hawley Michele Heintz

Darren & Nichole Hester Joe Higgins Jenny Hiltner Jessica Hiveley William Hopkins John Horan Jean Hutzler Neil Hutzler Steve Ireland Patricia Jansen Margaret Jenkins Sheila Jenkins Heather Johnson Brian Jones Edward & Rebecca Jorgenson Thomas Kellin Dennis & Kari Knapp

Michael Kruse William Kuchera Terrence Lagerlund Jana Le Scherf Jennifer Lawrence Rodney Lee Joseph Levy Karen Loeks Mary Lundquist Jamie MacGregor Barb Magnuson Tom Marek Judith Matonich Ronald Maunu Donna McKenny Robert McLeod Michael Mertens Paul Meyer Steve & Susan Meyer

Kendall Miller David & Suzanne MillsRittmann Jeff Moore Denise Mose Clair Mrotek Tamra Mrotek Jennifer Muller-Yauch Daniel Murphy Linda Murphy Sean Murray Michael & Nicole Murray Michael Murray Sr. R E Nelson Scott Nickels Bill Oliver Susan Olson Bill Ortell Ann Marie Patterson Jeffery & Cindy Petersen Cevin Petersen Matt & Dana Peterson Robert Peterson Frederick & Jean Pfotenhauer Brett Pinkerton David & Karen Postma Paul Pratt Ryan & Amanda Priebe Robert Purdy Anthony Pyka David & Beth Rait Dan Rawley Joe Reardon

James Regier Julie Reimer Elizabeth Rise Joanne Rogin, M.D. Sara Rohde Greg Rud Noelle Rude Cindy Sanders Nicole Schauer Craig Schmitz Donald Shaw Mark Sheffert Donovan Sienko Diana Simms Bridget Slusarek Benjamin Smith Jane Soik Reed John Sotebeer Dolores Speidel Scott St. George Jamie & Cindy Steffen Dave Stimpson Anita Stoltenberg Maurietta Sureth John Svenkeson Jeanne Theis Llyod Thomason Martha Thurlow Scott & Michelle Torborg Samantha Torgerson Miranda Trebesch Dean Uglem Randy & Amy Unzicker

Adrian & Elaine Vanderwiel-Wirrell Robert Vavra Candace Vegter Kathleen Wall Bill Walsh Laurel Watson Gary Weaver Annie & Rodney Weiler Julie Weisbecker Jeff Wellman Jake Wendt Dan & Heather Werdel Janet Whettam Jennifer Wick Mark Wickersham Gary Widmer Melissa Williams Janet Resler Susan Tangen Eugene Wisakowsky Peter & Amy Woehnker Dale & Rochelle Wohlers Nancy Wold Gregory Worrell, M.D. Randy & Michelle Youngdahl Craig Zemke Jenni Zickert Birch Lake Dental CBRE Matching Gift Program Cornell, Kahler, Shidell & Mair, PLLP

Thank You

CorTalent, LLC Edelman USA EideBailly Elcor Realty of Rochester, Inc. Hawley Area United Fund Pediatric Therapy Partners Inc Rochester Golf & Country Club Sauk Rapids Sportsman Club Unified Theory, Inc



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 Minnesota 1600 University Avenue West, Suite 300 | St. Paul, MN 55104

Efmn 2013 annual report  
Efmn 2013 annual report