M I N N E S O T A
W W W. E F M N . OR G
A Q UAR TER LY PUB L IC AT I ON OF T HE E P I L E P S Y FO UNDATI O N O F MI NNE SO TA
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Clinician’s Corner
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Epilepsy in the News
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Rise Above Seizures
FA LL 2014
Get Educated About Epilepsy – opportunities on page 7!
“In our 60th
In our 60th anniversary year, we’ve made significant progress in raising epilepsy awareness and supporting people with seizures:
anniversary year, we’ve made significant progress in raising epilepsy awareness and
• 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!
supporting people with seizures.”
Vicki Kopplin Executive Director
THE EPILEPSY FOUNDATION OF MINNESOTA
PROFESSIONAL ADVISORY BOARD
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.
Chair | Timothy Feyma, MD | Gillette Children's Specialty Healthcare Anne Barnwell, MS, CRC | Epilepsy Advocacy & Employment Group Jeannine Conway, PharmD, BCPS | University of Minnesota Armantina Espinosa, MD | Minneapolis Clinic of Neurology Rupert Exconde, MD | Noran Neurological Clinic Miguel Fiol, MD | University of Minnesota Douglas Heck, PhD | Duluth Psychological Clinic, Inc Thomas Henry, MD | University of Minnesota Ilo Leppik, MD | University of Minnesota & MINCEP Epilepsy Care Donna McKenny, PHN, LSN, MEd | Centennial Schools Katherine Nickles, MD | Mayo Clinic Patricia Penovich, MD | Minnesota Epilepsy Group Kathleen Rieke, MD | CentraCare Health System Frank Ritter, MD | Minnesota Epilepsy Group Joanne Rogin, MD | Midwest Center for Seizure Disorders Ravinda Samaraweera, MD | Sanford Health Tess Sierzant, MS, RN, ACNS-BC, CNRN Teresa Tran, MD | Park Nicollet
MISSION The Epilepsy Foundation of Minnesota leads the fight to stop seizures, find a cure and overcome the challenges of living with epilepsy.
OFFICERS President Past President Vice President Treasurer
Brett Boyum Ann S. Kelly Jones Tim Gallagher Elizabeth Beastrom
APPOINTED MEMBERS Christopher Turoski – Legal Counsel Marcus Fischer Brandon Megal Deb Meyer Mike Murray Wendy Osterberg
Jim Silburn Tom Spiczka Trudi Trysla Randy Unzicker Bill Walsh
DESIGNATED MEMBERS Jill Corbin - Northland Representative Timothy Feyma – PAB Chair Ryan Lais - Southern MN Representative Mark Lenhardt – Central MN Representative Josh Malnourie – Northwestern MN & Eastern ND Representative
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Clinicians Corner
Brain Stimulation for Uncontrolled Seizures By 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
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Brain Stimulation for Uncontrolled Seizures (Continued from page 3) 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.
Getting the most out of doctor visits 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 kryan@efmn.org.
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EFMN in Action
Proudly serving people across MN and ND 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.
Schloarship Winners The 2014 Elam Baer and Janis Clay Scholarship winners gathered with the Board of Directors at a celebratory lunch in June.
Epilepsy in the News • 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.
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Rise Above Seizures Q&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.
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.
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Get Educated About Epilepsy This Fall Seizure Smart Community Workshops Learn about epilepsy, seizure first aid and hear from families affected by epilepsy in these FREE workshops. Participants
CONFERENCE Saturday, October 25 from 9AM – 5PM DoubleTree by Hilton | Minneapolis- Park Place FREE to people with epilepsy; $40 registration for others
receive a light lunch and two CEUs. ROCHESTER Saturday, October 11 | 10:00 a.m. – 12:30 p.m. Minnesota School of Business
Don’t miss keynote speaker, Founder of Epilepsy.com’s
Guest speakers: Michael J. Zaccariello, Ph.D., L.P., Pediatric
Warren Lammert! Five CEUs are awarded to professionals
Neuropsychologist; Prasida Khanal, Master of Public Health
and registration includes: breakfast, lunch, educational
Candidate.
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?
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
Here’s what you can do: 1) Order a free classroom kit to use in your
DULUTH
Saturday, November 8 | 10:00 a.m. – 12:30 p.m.
child's classroom
2) EFMN staff can provide free seizure training
Lake Superior College
Guest speakers: Brian Moran, M.D., Neurologist;
to classrooms
3) Educate your child’s school personnel/nurse with
Ardys Richards, M.S.W., Social Worker.
a visit from EFMN staff 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 rsvp@efmn.org or 1.800.779.0777, ext. 2310. Sponsors:
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Thank You for Strolling With Us
Thank 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: Teams over $5,000 Brenden’s Believers Jake’s Team Nolan’s Crew Peyton’s Platoon Stephen Argyle Storm Teams over $3,000 Adam’s Super Heroes Elena’s Strollers Liam’s Luck Charms Rising Phoenix
Sauntering with Schindler Spirit Spike & Wave Stephanie Atwell Team Brandalyn Team CaitieMae Teams over $1,000 Team Cara Alison L. Team Cardinals Allie’s Army Team HH Been Walking for Ben-jamin Team June Bug Ben’s Chit Chatters Team Leah Braden’s Pitcrew Team Maddie Braegelmann Brigade TEAM MARCUS BrownTown Team Mathew and Hunter Brynn’s Backers Team Nik S Coaches Wives Dream Team Team Roberta Coco’s Crew Team Savers Cole’s Crew Advancing pharmacotherapy. Team Shannon Connections SM Improving life. Team Silas Diamond’s Stars Team Sweet PEA Ehresmann End to Epilepsy Team Tiara Epilepsy Avengers EpiTrekkers Thank You Sponsors: Gillette Super Strollers Goal Getters Hannah’s Bananas Harlow’s Hope103352.01 The Hope Squad Jordans Jammers Journey for Jess UCB Kaden’s Crew 103352_01_CorpAd_Couple_4pt5x7pt5.indd 1 3/7/11 2:04 PM Cyberonics Katelyn’s Crew BAYADA Home Health Kayla’s Krew Dakota Medical Foundation Lego Leaders Maurices Lincoln’s League Midwest Center for Seizure Disorders Mad Hatters Minneapolis Clinic of Neurology Minnesota Epilepsy Group Olmsted Medical Center The Miraculous Messmer’s Neurons Unite - CentraCare Health Systems Ollie Tumba & The Electric Brains Peterson Posse Roaring Thunder Ronan’s Rebels Team Linc Team Travis The Movers and Shakers
Providing therapies that empower people suffering from CNS diseases