M i n n es o t a
www. e f m n . or g
A q uar t e r ly pu b l icat i on of t he E p i l eps y F oundati o n o f mi nneso ta
Clinicianâ€™s Corner: SUDEP
Seizures Donâ€™t Stop Me
Save the Date in 2014
We serve over 100,000 people annually, and 2014 marks our 60th anniversary of helping people with seizures!
“We serve over 100,000 people annually, and 2014 marks our 60th anniversary of helping people with seizures!”
2014 marks our 60th year of helping people with seizures realize their full potential by providing programs and services that educate, connect and empower. People with seizures turn to EFMN for educational information, support and connection to others facing similar challenges. Seizures should not stop a child from fulfilling a dream to attend summer camp, or prevent an adult from achieving gainful employment. We are here to help! Join us in 2014 as we continue the momentum we’ve built to increase public awareness and reduce the stigma around epilepsy. Save the date on page seven for key awareness events! Your feedback is always welcome: email@example.com or 651.287.2314.
Vicki Kopplin Executive Director
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. 1600 University Avenue West | Suite 300 | St. Paul, MN 55104 www.efmn.org | 800.779.0777
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 Secretary
Brett Boyum Ann S. Kelly Jones Tim Gallagher Elizabeth Beastrom Kari Scanlon
Appointed Members Mike Britten Jason Engkjer – Legal Counsel Tabitha Fields Marcus Fischer Brandon Megal Deb Meyer Mike Murray Wendy Osterberg
2 | Epilepsy Minnesota
Jim Silburn Tom Spiczka Jessica Stoltenberg Trudi Trysla Christopher Turoski Randy Unzicker Bill Walsh
Designated Members Tess Sierzant – PAB Chair Mark Lenhardt –Central MN Representative Josh Malnourie – Northwestern MN & Eastern ND Representative
Professional Advisory Board Chair | Tess Sierzant, MS, RN, ACNS-BC, CNRN | Saint Joseph’s Hospital Anne Barnwell, MS, CRC | Epilepsy Advocacy & Employment Group Jeannine Conway, PharmD, BCPS | University of Minnesota Armantina Espinosa, MD | Minneapolis Clinic of Neurology Timothy Feyma, MD | Gillette Children's Specialty Healthcare 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 Elson So, MD | Division of Epilepsy, Mayo Clinic Teresa Tran, MD | Park Nicollet
How Common is the Nightmare? Sudden Unexplained Death in Epilepsy By Professional Advisory Board Member Katherine Nickels, MD
When the diagnosis of epilepsy is given, there are many
bones. Seizures in a pool or bathtub can cause accidental
questions that are asked. "How long is medication going
drowning. Seizures while driving can lead to car accidents.
to be needed?" "Will the seizures go away?" "How will this
Fortunately, severe injury due to a seizure is uncommon and
affect work, school, or family life?" However, there is one
some can be prevented. For example, people with epilepsy
question that is often thought, but not always discussed,
are cautioned to never swim alone and to shower rather than
â€œcan a person die from epilepsy?"
Overall, people with epilepsy are expected to get an
We also need to be aware that people with epilepsy are at
education, work, have families and pursue other goals just
increased risk for premature death. How big is this risk? In
like those without epilepsy. We do need to be aware that
adults and children the mortality rate is 2-3.5 times that of
seizures can cause injuries such as cuts, bruises and broken
the general population1. Why does this happen?
Continued on page 4 www.efmn.org
Epilepsy Minnesota | 3
How Common is the Nightmare? Sudden Unexplained Death in Epilepsy (Continued from page 3) Most often, the cause of death is not directly related to
What can I do to decrease SUDEP risk?
seizures. In the majority of children, it’s the underlying
It is most important to have good control over seizures by
neurologic disease that leads to early death. In fact, the
having excellent medication compliance. If seizures are
mortality rate in children with normal learning and a normal
not well controlled, work with your physician to ensure
neurologic exam is essentially the same as the general
all available therapy options have been discussed. Avoid
population . In adults, the most common causes of death
seizure triggers like sleep deprivation and excessive alcohol
are the same as the general population - cancer, heart
consumption. Discuss SUDEP risks with your physician.
disease, stroke . Unfortunately, seizure related deaths can
Make sure those around you know what to do if you have a
also happen due to prolonged seizures (status epilepticus),
seizure. Shower rather than bathe and never swim alone.
seizure-related accidents (such as drowning) and SUDEP.
Currently, there are several devices on the market that aim
What is SUDEP?
to improve safety for people with epilepsy. These include
Sudden unexplained death in epilepsy (SUDEP) is the
seizure detection devices, anti-suffocation pillows, and
sudden death of a person with epilepsy without any clear
monitoring for seizures at night. However, none are FDA
cause. The death is not due to a seizure-related accident or
approved medical devices and none have been shown
a prolonged life-threatening seizure (status epilepticus). We
to reduce the risk of SUDEP. More scientific evidence is
do not know why SUDEP occurs. Often, there is evidence
of a seizure, but the seizure is no more severe than previous seizures. There are multiple theories being investigated, such as a possible heart rhythm disturbance, stopping breathing
Where can I get more information?
(apnea) or brain stem dysfunction.
• SUDEP Institute www.efa.org
• Making Sense of SUDEP
How often does SUDEP occur and
who is at greatest risk?
• North American SUDEP Registry
SUDEP occurs in approximately one in 1,000 people with
epilepsy per year. There are no definite ways to predict who
• Partners Against Mortality in Epilepsy
is at highest risk for SUDEP, but those with more frequent
and poorly controlled seizures, especially generalized tonic-
• SUDEP Aware www.sudepaware.org
clonic (grand mal) seizures do appear to be at greater risk. Other potential risk factors include not taking medications as prescribed, young adult (age 20-40 years) age, longer epilepsy duration and intellectual disability. Overall, SUDEP is 4
the cause of death in up to 17% of people with epilepsy of all
K. Nickels, B. Grossardt, E. Wirrell. “Epilepsy-related mortality is low in children: A 30 year population-based study in Olmsted County, MN.” Epilepsia. 53(12)2164-2171, 2012.
age, but the risk of SUDEP in children is very low. How can SUDEP be prevented? Even if all of these potential risks are avoided, SUDEP can still happen. It is important for care givers to understand that the
A. Berg, K. Nickels, E. Wirrell, E, et al. “Mortality Risks in New-Onset Childhood Epilepsy.” Pediatrics. 2013;132:124-131.
D. Ficker, E. So, W. Shen, et al. “Population-based study of the incidence of sudden unexplained death in epilepsy.” Neurology. 1998;51:1270-1274.
T. Walczak, I. Leppik, M. D’Amelio, et al. “Incidence and risk factors in sudden unexplained death in epilepsy.” Neurology. 2001; 56:519-525.
epilepsy related death could not have been prevented. This point cannot be over emphasized to families and friends of victims of SUDEP.
4 | Epilepsy Minnesota
Seizures Don't Stop Me By Torri Broich
I opened my eyes and was
was a bad idea... after being seizure-free for awhile, I had a
surrounded by people in white
grand mal seizure during a marching band competition. After
lab coats, a breathing mask
that, I was having seizures more often, and I could not tell
around my nose and mouth.
when I was going to have one. I remember having a seizure
I was so confused, I had so
when I went swimming once, at my own birthday party, with
many questions. I kept hearing
my boyfriend, and multiple seizures at home. Because of
the word seizure. I thought.
my decision to stop my medication, without telling anyone, I
Why did I have one? Will I be
had the consequence of having more seizures, more testing
okay? Will I have more? Little
and more medication (not too mention my parents and family
did I know this day was only
being upset with me). I started feeling bad for myself and
the beginning of my battle with
I wanted people to pity me. I was ashamed of having this
disease and I didn’t like to talk about it. “I’ll always have this
I was eleven years old when I was diagnosed with epilepsy
disease no – one can help me and no one understands”.
and I had no idea what it was. I remember going to Mayo in
I continued to live with that attitude, until I realized one day
Rochester, MN for blood work and testing on a regular basis.
that feeling bad for myself was not going to cure my epilepsy.
I had numerous electroencephalograms (EEG’s) done. An
Wanting sympathy would not get me anywhere either. The
EEG is a noninvasive test that observes the electrical signals
only person that could prevent the seizures was me, so that
happening in the brain, it detects seizures, and they (EEG’s)
is exactly what I did. I started taking my medication daily.
scared me. I did not like getting those things attached to
If I had a seizure I would just get back up and start again. I
my head, it was uncomfortable. I had to sleep with those
decided to take control. I am now twenty three years old, a
electrodes on, then I was woken up about after an hour
homeowner, married and have had from epilepsy for twelve
and I had to look at a bright flashing light. I didn’t like that
years. I’m no longer ashamed, instead I like to focus on what
either. After several EEG’s and multiple blood samples, I was
I can do to help others. My mom once told me, when I was
diagnosed with epilepsy and had to start taking medication.
first diagnosed, that God wouldn’t have given me epilepsy
Once I started school, my teachers and peers were made aware that I had epilepsy. I was different and I felt ashamed; so I stopped taking my medication. Little did I know that
if I was not strong enough to control it. That is what I have to remember. Do not let epilepsy bring you down... something important that I realized was that epilepsy does not have a hold on me; I have a hold on it.
The Foundation’s largest youth program celebrates kids with epilepsy, connecting them with others to reduce isolation. Join the 300+ Shining Stars across MN and ND for FREE (ages 18 and under) online at efmn.org or call 800.779.0777, ext. 2310 for assistance.
Epilepsy Minnesota | 5
EFMN in Action
Proudly serving people across MN and ND Midwest Seizure Fall Conference The Midwest Seizure Fall Conference drew nearly 250 people and provided epilepsy resources to attendees.
Go-Pher Epilepsy Awareness Game 50,000 rally towels were distributed at the 10/26 Go-Pher Epilepsy Awareness Game! Over 500 people joined us on September 21 to show our support for Coach Kill and the 60,000 people in our community with epilepsy.
Cargill Cares Community Hero Award
Team of Volunteers on Behalf of Epilepsy Foundation of MN Minneapolis, MN to recognize the volunteer efforts of all who serve their communities tirelessly
The Cargill Cares Community Hero Award was presented to Board member Chris Turoski and volunteer Bill Atwell for their tireless efforts to raise epilepsy awareness.
6 | Epilepsy Minnesota
Save the Date in 2014 January 1, 2014: EFMN is moving to an organization
April 1, 2014: Due date for applications to the Elam Baer
page on Facebook to better serve you. Please
and Janis Clay Educational Scholarship program. Ten,
"like" the new organization page at facebook.com/
$1000 scholarships will be awarded to students who have
epilepsyfoundationofminnesota to receive our updates.
shown courage in dealing with epilepsy. Application form is
February 1, 2014: Camp Oz registration opens at
available by contacting firstname.lastname@example.org. April 12, 2014: Annual “Light Up the Night” Gala featuring
efmn.org. March 4, 2014: Join us in the MN State Capitol rotunda as we advocate for people affected by seizures and educate our representatives about how to support people with epilepsy. Contact email@example.com to register.
America’s Got Talent finalist Connor Doran, a talented indoor kite flyer with epilepsy. Tickets on sale February 1 at efmn.org. August 7, 2014: Annual Stroll for Epilepsy. Registration will open in late spring.
Giving Back In 1988, David Wasson made the decision to impact the lives of people with epilepsy in Minnesota and made a legacy gift to EFMN through his estate. Twenty-four years later on December 25, 2012, David passed away, but his legacy continues through his generosity. David built his home in Chanhassen in 1991 and was an ever-present fixture in his community, becoming close with his neighbors (who supported David when he had seizures). David was an eternal student, and here is an example of how his love of learning and his generosity combined to change a life: •
This fall, a woman who was having difficulties passing her GED test contacted EFMN’s Information & Referral service, which helped her get an accommodation for extra time to retake the test. She recently passed her GED test!
EFMN is grateful for the generosity and legacy of David Wasson, and to ALL of our 2013 individual, corporate and foundation donors. Your generosity brings us closer to a world where people with seizures realize their full potential. To learn about planned giving or ways to support programs & services, contact Hannah Baines at
Epilepsy in the News • Children's Hospitals and Clinics of Minnesota recently unveiled a new Neuroscience Unit for Epilepsy and Neurosurgery Patients, featuring: 26 private rooms, a play area where children can be monitored with vEEG technology and more. Read more at childrensmn.org. • The Mayo Clinic revealed the new NeuroPace RNS implantable device to reduce the frequency/severity of seizures in people over 18 years of age with partial onset seizures. Former EFMN Winning Kid Hannah Meunier’s family was interviewed on Fox 9 about the new device. • The FDA is warning the public that the anti-seizure drug Onfi (clobazam) can cause rare but serious skin reactions. Patients taking Onfi should seek immediate medical treatment if they develop a rash, blistering or peeling of the skin, sores in the mouth or hives. Full details available at epilepsy.com.
651.287.2319 or firstname.lastname@example.org.
Epilepsy Minnesota | 7
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1600 University Avenue West, Suite 300 Saint Paul, MN 55104 www.efmn.org
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Sign up for an email version of this newsletter and to receive the latest news and information from the Epilepsy Foundation of Minnesota. Visit www.efmn.org today to connect with us via email.
SPECIAL 60th ANNIVERSARY OFFER!
Schedule a pick up at efmn.org by February 15, 2014 & receive a $5 Caribou gift card Enter promo code â€œEFMN60â€? to receive your gift card. The Foundation collects used clothing and home items, with 100% of the proceeds supporting our programs/services. Schedule a convenient pick up at www.efmn.org or call 651.287.2300, ext. 3 today! One gift card per household; minimum two bags of donated items.
Events Calendar Twin Cities Area
ADULT BOWLING Saturday, February 15 2-4 PM The Park Tavern 3401 Louisiana Ave. S. in St. Louis Park
SEA LIFE MINNESOTA AQUARIUM February 8 10-11:30 AM Mall of America 60 E. Broadway in Bloomington
Join us for an afternoon of bowling and fun! Pizza and beverages will be provided. Free to people with epilepsy; $5/person. RSVP required by February 12.
Join us for a fun tour of one of the largest aquariums in North America! Meet and connect with other families affected by epilepsy as you explore over 10,000 sea creatures. FREE for youth with epilepsy, $5/additional person. RSVP by January 31.
EAST METRO ADULT CONNECT Meets the 1st Thursday of each month January 2, February 6, March 6 6:30-8 PM EFMN Office 1600 University Ave. W., Suite 300 in St. Paul (16, 21, 50 & 84 bus lines)
AWARENESS DAY AT THE CAPITOL March 4 9 AM – 3:30 PM 75 Rev. Dr. Martin Luther King Junior Boulevard in St. Paul
Connect with other adults affected by seizures in St. Paul, or join us from the comfort of your own home via conference call. January special guest music therapist; March 6 guests from NAMI. RSVP encouraged.
Raise epilepsy awareness with other advocates and make your voice heard! Lunch, materials and bussing from EFMN are provided. RSVP required by February 17. Program begins in the Rotunda – more details at efmn.org.
WEST METRO ADULT CONNECT Meets the 2nd Thursday of each month January 9, February 13, March 13 6:30-8 PM Southdale Library 7001 York Avenue South in Edina
BRAINSTORMS ART COLLECTION Call for Entries January 1 – April 15
Join us in the small conference room to connect with other adults affected by seizures. January and February guest Lisa Van Ahn on wellness and self-employment. RSVP encouraged. FAMILY CONNECT Saturday, January 25 11 AM – 1 PM Southdale Library 7001 York Ave. S. in Edina Join us for lunch and time to connect. After lunch, Jessie Forston of Learning Tree Yoga & Meaningful Movement will lead an hour of relaxation exercises for families. RSVP by January 22.
Showcase your talent as an artist affected by seizures in celebration of the 10th Anniversary of Brainstorms by contributing a piece of artwork. Contact email@example.com to participate. ELAM BAER & JANIS CLAY EDUCATIONAL SCHOLARSHIP Call for Applications January 1 – April 1 Ten applicants with epilepsy will be awarded $1,000 scholarships for post-secondary education. Applications are available at efmn.org or contact firstname.lastname@example.org.
Diane White - Twin Cities Program Manager email@example.com 651.287.2312
RSVP : 800.779.0777, ext. 2310 or firstname.lastname@example.org
Nikki Baker - Twin Cities Senior Program Manager email@example.com 651.287.2308
Amanda Pike - Twin Cities Program Manager Education firstname.lastname@example.org 651.287.2313
ADULT CONNECT Meets the 2nd Thursday of each month January 9, February 13, March 13 5:30-7 PM Essentia Health SMDC 400 East 3rd Street in Duluth Join us in the Minnesota Room across from the 1st floor cafeteria with facilitator, Kyah Altiere for a time of conversation, support and connection. RSVP encouraged. WOMEN CONNECT Meets the 3rd Tuesday every other month January 21, March 18 6:30-8 PM St. Luke’s Hospital 915 East 1st Street in Duluth If you or someone you love has epilepsy, this is a chance to connect with other women affected by seizures. Meet in conference room 337. Take middle elevators to 3rd floor, turn right down the hall. RSVP encouraged. BOWLING & PIZZA PARTY January 25 1-3 PM Incline Station Bowling 601 W. Superior Street in Duluth Hit the lanes and connect with old and new friends! FREE to people with epilepsy, $5/additional person. Shoes, pizza and soda included. RSVP encouraged by January 23.
Lisa Peterson - Duluth Outreach Coordinator email@example.com 218.624.1330
Fargo PARENT CONNECT Meets the 1st Tuesday of each month January 7, February 4, March 4 7-9 PM Pediatric Therapy Partners 3060 Frontier Way S. in Fargo In January we’ll discuss “taking care of you” – a therapeutic chair massage will be available! In February, Moe Schroeder from Family Voices of ND speaks about programs/ services for children. In March, adults will share experiences growing up with epilepsy. RSVP encouraged. ADULT CONNECT Meets the 1st Monday of each month January 6, February 3, March 3 6-8 PM Sanford Health South University Campus Conference Room 1A-1 In January, Douglas Krenz from the Sanford Neuroscience Center will join us at 7:15. A staff member will join us to explain SSDI vs SSI in February. March is all about brain basics. RSVP encouraged. FAMILY DAY AT THE MUSEUM January 25 10-11 AM North Dakota Museum of Art 261 Centennial Drive in Grand Forks Join this community-wide event for families to participate in various projects together. Lunch buffet and time to connect with others at Happy Joe’s will follow the event at 11 AM. RSVP by January 4. ART AT THE PLAINS March 15 10:30 AM – 12:30 PM Plains Art Museum 704 1st Ave. N. in Fargo “Wild Things in the Museum” is a FREE event that invites families to explore the museum and make a fun art project! Refreshments provided. RSVP by March 1.
WINTER WONDERLAND Saturday, February 22 1-3:30 PM Ironwood Christian Springs Ranch 7291 County Road 6 in Stewartville
ADULT CONNECT Meets the 1st Thursday of each month January 9, February 6, March 6 7-8:30 PM Great River Regional Library 1300 W. St. Germain Street in St. Cloud
Banish the wintertime blues with an adventure at Ironwood! Snow tubing, horse-drawn wagon rides, Clyde the Camel and hot chocolate/treats are provided. FREE to people with epilepsy, $5/additional person. RSVP by February 12.
Connect is open to all adults (parents encouraged), affected by epilepsy, looking for support and information on living well with epilepsy. RSVP encouraged.
ADULT CONNECT Meets the third Tuesday of each month January 21, February 18, March 18 6:30-8 PM Rochester Area Family YMCA 709 1st Ave. S.W. in Rochester
VALENTINE’S BOWLING PARTY February 15 1:30 – 3:30 PM Great River Bowl 208 2nd Street S. in Sartell
Join us for an evening of conversation and connection with other adults affected by seizures. RSVP encouraged.
Wear red! Bring your favorite Valentine to bowl and connect with others affected by epilepsy. Pizza & soda provided. FREE to people with epilepsy, $5/additional person. RSVP by February 10.
RSVP : 800.779.0777, ext. 2310 or firstname.lastname@example.org Vicki Snyder - Rochester Outreach Coordinator email@example.com 507.287.2103
Lori Braegelmann - St. Cloud Outreach Coordinator firstname.lastname@example.org 320.203.9722
Camp Oz Registration Opens February 1 Camp Oz is June 15-20, 2014 at YMCA's Camp St. Croix in Hudson, WI Register online starting February 1, 2014 at efmn.org The last two years, Camp Oz had a waiting list and fills fast. Register early!
Amy Haugen - Fargo Outreach Coordinator email@example.com 701.429.1165