Fall 2014 Newsletter

Clinician’s Corner

Epilepsy in the News

Rise Above Seizures

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Get Educated About Epilepsy – opportunities on page 7!

A QUARTERLY PUBLICATION OF THE EPILEPSY FOUNDATION OF MINNESOTA FALL 2014

WWW.EFMN.ORG

M I N N E S O T A

2 | Epilepsy Minnesota www.efmn.org

THE EPILEPSY FOUNDATION OF MINNESOTA is a nonprofit organization and one of forty-eight affiliates of the National Epilepsy Foundation. Serving Minnesota and Eastern North Dakota, the Foundation works to educate, connect and empower people affected by seizures.

MISSION The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges of living with epilepsy.

OFFICERSPresident Brett BoyumPast President Ann S. Kelly JonesVice President Tim GallagherTreasurer Elizabeth Beastrom

APPOINTED MEMBERS

DESIGNATED MEMBERS

Jill Corbin - Northland RepresentativeTimothy Feyma – PAB ChairRyan Lais - Southern MN RepresentativeMark Lenhardt – Central MN RepresentativeJosh Malnourie – Northwestern MN & Eastern ND Representative

PROFESSIONAL ADVISORY BOARDChair | Timothy Feyma, MD | Gillette Children's Specialty HealthcareAnne Barnwell, MS, CRC | Epilepsy Advocacy & Employment GroupJeannine Conway, PharmD, BCPS | University of MinnesotaArmantina Espinosa, MD | Minneapolis Clinic of NeurologyRupert Exconde, MD | Noran Neurological ClinicMiguel Fiol, MD | University of MinnesotaDouglas Heck, PhD | Duluth Psychological Clinic, IncThomas Henry, MD | University of MinnesotaIlo Leppik, MD | University of Minnesota & MINCEP Epilepsy CareDonna McKenny, PHN, LSN, MEd | Centennial SchoolsKatherine Nickles, MD | Mayo ClinicPatricia Penovich, MD | Minnesota Epilepsy GroupKathleen Rieke, MD | CentraCare Health SystemFrank Ritter, MD | Minnesota Epilepsy GroupJoanne Rogin, MD | Midwest Center for Seizure Disorders Ravinda Samaraweera, MD | Sanford HealthTess Sierzant, MS, RN, ACNS-BC, CNRNTeresa Tran, MD | Park Nicollet

In our 60th anniversary year, we’ve made significant progress in raising epilepsy awareness and supporting people with seizures:

• The “Chasing Dreams” Coach Kill Fund creation will support a cabin at Camp Oz for years to come and increase the reach of the Seizure Smart Schools program.• We had the most media coverage this year in EFMN’s history.• Record numbers of participants turned out at the Stroll for Epilepsy.

In this issue, check out ways to get involved in National Epilepsy Awareness Month in November and a number of upcoming educational opportunities. We hope to see you this fall!

Vicki KopplinExecutive Director

“In our 60th

anniversary

year, we’ve

made significant

progress in

raising epilepsy

awareness and

supporting people

with seizures.”

Christopher Turoski – Legal CounselMarcus Fischer Brandon MegalDeb MeyerMike MurrayWendy Osterberg

Jim SilburnTom SpiczkaTrudi TryslaRandy UnzickerBill Walsh

www.efmn.org Epilepsy Minnesota | 3

Clinicians Corner Brain Stimulation for Uncontrolled SeizuresBy Professional Advisory Board Member Thomas R. Henry, M.D.

Brain electrical stimulation has been developed as a possible alternative to resective epilepsy surgery (removing a part of the brain where seizures start), for patients whose seizures cannot be controlled with medications. The U.S. Food & Drug Administration, which regulates medical devices, first approved a brain stimulation device in November 2013. This FDA-approved stimulation system is the Responsive Cortical Stimulation (RNS®) system, which is produced by the NeuroPace corporation. The FDA approved the RNS® system for treatment of adults with partial-onset seizures that were not controlled with two or more antiepileptic drugs, that have been localized to no more than two distinct brain areas with diagnostic testing., These seizures must be frequent and disabling (motor partial seizures, complex partial seizures, and generalized tonic-clonic seizures).

The RNS® system can be used to stimulate one or two sites in the brain where seizures start. Surface brain sites can be stimulated through “subdural” electrodes that are placed by a neurosurgeon on the surface of the brain. Deepbrain sites can be stimulated through “depth” electrodes that enter the brain tissue. The RNS® system also records brain electrical activity through these electrodes. Electrical recording and stimulation are controlled by a small neurostimulator device which is implanted in the bone, under the scalp. The neurostimulator is programmed using a magnetic wand. This sets up how the device stimulates the brain when the

electrodes sense a seizure pattern. The magnetic wand also transfers EEG data from the device to the system’s laptop computer for storage and later analysis.

Who should receive this therapy?Adults with well-defined partial epilepsy that has not been able to be controlled despite 2 or more medication regimens are candidates for RNS®. Resective epilepsy surgery may be more effective for some, and this is especially true when a single focus of electrical seizure onsets is associated with a structural MRI lesion.

Patients with partial epilepsy and seizure uncontrolled by medications often are found to have two different sites where seizures start, or to have epilepsy focus or structural lesions that are located in places where resection would be unsafe. For example, patients who have seizures arising independently in both temporal lobes cannot have resection on both sides of the brain, but in general may benefit from stimulation on both sides of the brain. Large cortical malformations (areas where the brain did not develop normally) are difficult to safely resect, but stimulation at sites in or near a malformation often is feasible. Seizure onset zones that are in or near “eloquent” cortex (These are brain areas that cannot be resected without producing permanent deficits in movement, vision, sense of touch, speech or language comprehension.) have been stimulated

Continued on page 4


with RNS®, and this stimulation did not produce deficits in the motor, sensory or language functions. Extensive testing with the same types of advanced EEG, imaging and neuropsychological evaluations that assess potential candidates for epilepsy resections must be performed to give the epilepsy physician the information needed to evaluate candidacy for RNS®.

How effective is this therapy?The controlled study submitted to the FDA, found that in the first 3 months the patients who had the device turned experienced a 38 percent decrease in the average number of seizures per month, compared to a 17 percent reduction in patients who had the device turned off. Longer term studies which included the whole group of patients who were then all turned onfound that 82 % of patients had significant seizure reduction over 2 years of treatment.

What are the risks of this therapy?The surgical implantation risks of RNS® include bleeding at the intracranial electrode sites (4.7 %) and post-implant infection (7 %). These are similar rates to those for deep brain stimulation in Parkinsonism and other disorders. Death does not appear to have occurred at higher rates in those with the RNS® System than those without.

Long-term brain electrical stimulation in general was considered by the FDA to be safe and tolerable in the completed studies. In particular, no negative side effects on cognitive function (thinking and memory) or mood were observed. In the pre-approval studies, fewer than 5 % of patients had increased complex partial or generalized tonic-

clonic seizures after 2 years of stimulation (in contrast with the 82 % of patients who had significant seizure reduction during this period) It is not possible to determine whether these seizure increases would have occurred even without stimulation.

Where is this therapy available?The NeuroPace RNS® System is being made available at high-level epilepsy centers (Level 4 Epilepsy Programs) , which have neurosurgeons experienced in subdural and depth electrode implantations, and neurologists experienced in evaluation and management of intractable epilepsies and localization of seizure-starting sites, including video-EEG recordings made with scalp electrodes and with electrodes placed inside the skull. The epilepsy specialists who program the RNS® System require specialized training to operate the software and programming devices., Special training and expertise is needed to select the correct target brain electrical events for triggering stimulation and to select appropriate stimulation electrodes and parameters.

How can an interested patient get more information on the RNS® System?The NeuroPace website (<www.neuropace.com>) provides patient-oriented information on the RNS® System. This website makes copyrighted diagrams, photographs and educational materials on RNS® available to the public. Patients interested in evaluation and management of refractory seizures, including therapy with the RNS® System, should discuss this with an epilepsy specialist at Level 4 epilepsy center.

Brain Stimulation for Uncontrolled Seizures(Continued from page 3)

Getting good medical care for your epilepsy is a team effort and you are the most important member of the team! Your doctor has a limited amount of time for each appointment, so here are tips to make the most of your time:

• Doctors are the epilepsy experts, but you are the expert of you. Write down how often you are having seizures, what medicines you take, side effects you are experiencing and how epilepsy is affecting you.

• Keep a seizure diary to track seizures, symptoms or medication changes since your last appointment.

• Ask questions! Questions could be about dealing with seizures, medication, other treatment options, or feelings of sadness or anxiety. Pick your top three questions, list them in terms of priority and bring them to your appointment.

To access more tips from our Information & Referral Service, contact 1.800.779.0777, ext. 2303 or [email protected].

Getting the most out of doctor visits


EFMN in ActionProudly serving people across MN and ND

Schloarship WinnersThe 2014 Elam Baer and Janis Clay Scholarship winners gathered with the Board of Directors at a celebratory lunch in June.

Winning Kid Reunion

Former Winning Kids gathered recently for a reunion. Read about this year’s Winning Kid on page six.

Connections in St. Cloud

Baseball fans gathered in St. Cloud for the Rox game to connect with others affected by epilepsy.

• November is National Epilepsy Awareness Month. Visit efmn.org/awareness for a list of ten ways YOU can raise awareness. Opportunities include the November 15 “Go-Pher” Epilepsy Awareness football game, a graphic to post in your social media spaces and more. The power of one voice can educate hundreds about epilepsy!

• On July 28, 2014, Representative Scott Perry (R-PA) introduced the Charlotte’s Web Medical Hemp Act of 2014 (H.R. 5226) to remove therapeutic hemp from the Controlled Substances Act and expand the availability of this important treatment option.

Epilepsy in the News


The Foundation’s largest youth program celebrates youth with epilepsy, connecting them with others to reduce isolation. Join the 300+ Shining Stars across MN and ND at efmn.org or call 800.779.0777, ext. 2310 for assistance.

Rise Above SeizuresQ&A with Katelyn Woehnker, EFMN’s Current Winning Kid

About my seizures: I was diagnosed with complex partial seizures in 2003 when I was five years old. Soon after, I started having many different kinds of seizures, from simple partial to tonic clonic seizures. My neurologist had me try several different seizure meds, but nothing really helped. An

MRI showed that I had a tumor in the right temporal lobe of my brain. My first brain surgery was in June of 2003. In 2005, I started having seizures again and new scans showed that my tumor had grown back. I had my second surgery in 2005. For seven years, my seizures were controlled. In the fall of 2012, my seizures returned. This time, the MRI scan showed three brain tumors had grown back. My surgeon was able to completely remove two of the tumors (the third was inoperable). I still take seizure meds every day and will probably have to take them for the rest of my life.

About my family: I live at home with my parents and my little brother, Carson. I have a cat named Lucky and a dog named Spencer.

In my free time: I like to hang out with my friends, go to movies, go shopping, and listen to music.

How I rise above seizures: Having epilepsy has made me a stronger person. When you have medical problems it makes you realize that things aren’t always going to go the way you want them to. I have learned that I can either get mad about it and let it bring me down, or I can just accept things the way they are and make the best of it.

Activities I enjoy: I am a cadet in the Air Force Junior ROTC program at school. I also enjoy horseback riding and photography.

Favorite vacation memory: One of my favorite places to visit is the Black Hills in South Dakota. However, my most memorable vacation was my Make-a-Wish trip to the Bahamas in July of 2013. My family and I stayed at the Atlantis resort. While I was there, I got to go swimming with the dolphins and we took a catamaran out to an island to go snorkeling. Atlantis is full of fun things to do. It was an amazing vacation! I hope to go there again someday.

Why I wanted to be the Winning Kid: Having epilepsy has made me want to change the way the world sees people who have seizures. Epilepsy doesn’t have to stop us from doing the things that we want to do. We can have jobs and hobbies just like everyone else. I am excited to be part of making people more aware of epilepsy. My goal is to be a voice for others with seizures and to make a difference so that someday, people with epilepsy can be in the military and other careers just like everyone else.


Get Educated About Epilepsy This Fall

Saturday, October 25 from 9AM – 5PM

DoubleTree by Hilton | Minneapolis- Park Place

FREE to people with epilepsy; $40 registration for others

Don’t miss keynote speaker, Founder of Epilepsy.com’s

Warren Lammert! Five CEUs are awarded to professionals

and registration includes: breakfast, lunch, educational

materials and parking. Topics include: medical marijuana,

yoga for living with epilepsy, autoimmune epilepsy and more.

Register at efmn.org or call 800.779.0777, ext. 2310.

Is Your School Seizure Smart?

Here’s what you can do:

1) Order a free classroom kit to use in your

child's classroom

2) EFMN staff can provide free seizure training

to classrooms

3) Educate your child’s school personnel/nurse with

a visit from EFMN staff

Seizure Smart Community Workshops

Learn about epilepsy, seizure first aid and hear from families

affected by epilepsy in these FREE workshops. Participants

receive a light lunch and two CEUs.

ROCHESTER

Saturday, October 11 | 10:00 a.m. – 12:30 p.m.

Minnesota School of Business

Guest speakers: Michael J. Zaccariello, Ph.D., L.P., Pediatric

Neuropsychologist; Prasida Khanal, Master of Public Health

Candidate.

FARGO

Thursday, October 30 | 6:00 – 8:30 p.m.

Fargo Public Library

Guest speakers: Ravinda Samaraweera, M.D., Neurologist;

Service Dogs of America, Speaker TBA

DULUTH

Saturday, November 8 | 10:00 a.m. – 12:30 p.m.

Lake Superior College

Guest speakers: Brian Moran, M.D., Neurologist;

Ardys Richards, M.S.W., Social Worker.

ST. CLOUD

Saturday, November 22 | 10:00 a.m. – 12:30 p.m.

Great River Regional Library, Mississippi Room

Guest speakers: Kathleen Rieke, M.D., Neurologist;

Speaker TBA from Mayo Clinic,.

RSVP to [email protected] or 1.800.779.0777, ext. 2310.

Sponsors:

CONFERENCE

1600 University Avenue West, Suite 300Saint Paul, MN 55104www.efmn.org

Nonprofit Org.U.S. Postage

PAIDTwin Cities MN

Permit No. 32600

Teams over $5,000Brenden’s BelieversJake’s Team Nolan’s CrewPeyton’s PlatoonStephen Argyle Storm

Teams over $3,000Adam’s Super HeroesElena’s StrollersLiam’s Luck CharmsRising Phoenix

Team LincTeam TravisThe Movers and Shakers

Teams over $1,000Alison L.Allie’s ArmyBeen Walking for Ben-jaminBen’s Chit ChattersBraden’s PitcrewBraegelmann BrigadeBrownTownBrynn’s BackersCoaches Wives Dream TeamCoco’s CrewCole’s CrewConnectionsDiamond’s StarsEhresmann End to EpilepsyEpilepsy Avengers EpiTrekkersGillette Super StrollersGoal GettersHannah’s BananasHarlow’s HopeThe Hope Squad Jordans JammersJourney for JessKaden’s CrewKatelyn’s CrewKayla’s KrewLego LeadersLincoln’s LeagueMad HattersMinnesota Epilepsy GroupThe Miraculous Messmer’sNeurons Unite - CentraCare Health SystemsOllie Tumba & The Electric BrainsPeterson PosseRoaring ThunderRonan’s Rebels

Sauntering with Schindler SpiritSpike & WaveStephanie AtwellTeam BrandalynTeam CaitieMaeTeam CaraTeam CardinalsTeam HHTeam June BugTeam LeahTeam MaddieTEAM MARCUSTeam Mathew and HunterTeam Nik STeam RobertaTeam SaversTeam ShannonTeam SilasTeam Sweet PEATeam Tiara

Thank You Sponsors:

UCBCyberonicsBAYADA Home HealthDakota Medical FoundationMauricesMidwest Center for Seizure DisordersMinneapolis Clinic of NeurologyOlmsted Medical Center

Thank You for Strolling With UsThank you to the 279 teams that Strolled with us this year – we saw record crowds! Special thanks to our Grand Club members and title sponsors:

Connect with us!Sign up for an email version of this newsletter and to receive the latest news and information from the EFMN. Visit www.efmn.org to connect with us via email.

Providing therapies that empower people suffering

from CNS diseases

Advancing pharmacotherapy. Improving life.SM

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Fall 2014 Newsletter

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