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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Seizures Don’t Stop Me
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Rise Above Seizures With Us
S P RING 2014
60,000 PEOPLE IN OUR COMMUNITY HAVE EPILEPSY. Let’s Rise Above Seizures.
Join us May 15 at 2 pm as we launch 60,000 balloons to celebrate people with epilepsy and #RiseAboveSeizures! page 7
“As we begin our next 60 years serving people with epilepsy, now is the time
Let the 60th anniversary celebrations begin! Next week, we expect 500+ people at our “Rise Above Seizures” gala, featuring “America’s Got Talent” Finalist/indoor kite flyer Connor Doran, who has epilepsy. On May 15, we will rise above seizures and raise epilepsy awareness by launching 60,000 balloons (this is an ecofriendly event). As we begin the next 60 years serving people with epilepsy, now is the time to celebrate the hopes and dreams of people with seizures and tell the community we are standing up to stigma.
to celebrate the hopes and dreams of people with seizures and tell
In this issue, you will see our Stroll on August 7 will be bigger, we have people from Australia taking note of our awareness efforts and more people are engaging with EFMN. I invite you to #RiseAboveSeizures with us! Your feedback is always welcome: vkopplin@efmn.org or 651.287.2314.
the community we are standing up to stigma.”
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.
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 Karl Scanlon
APPOINTED MEMBERS Jason Engkjer – Legal Counsel Tabitha Fields Marcus Fischer Brandon Megal Deb Meyer Mike Murray Wendy Osterberg
Jim Silburn Tom Spiczka Jessica Stoltenberg Trudi Trysla Christopher Turoski Randy Unzicker Bill Walsh
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
DESIGNATED MEMBERS Tess Sierzant – PAB Chair Mark Lenhardt – Central MN Representative Josh Malnourie – Northwestern MN & Eastern ND Representative
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www.efmn.org
Clinicians Corner Rescue Medications
By Professional Advisory Board Member Timothy Feyma, M.D.
Most seizures are short and do not require rescue medications. A rescue medication is defined as a treatment that should be used rarely to stop a seizure that lasts longer than 5 continuous minutes or a series of shorter seizures occurring in a cluster over a period of time which may differ from patient to patient. . Rescue medications are different from daily medications as daily medications aim to diminish the overall frequency of seizures and prevent sporadic need for a rescue medication. For a small number of patients with epilepsy, they may experience seizures that require rescue therapy. This may include continuous prolonged events referred to as “status epilepticus�. During status epilepticus, the brain spends more time seizing that acting normally, and the risk of brain
damage from a seizure heightens. Multiple theories have been proposed in regard to the process by which damage happens, but the duration of the seizure seems most likely responsible for the potential damage. Thus the longer a seizure continues, the higher the risk of potential brain damage. Limited data exists, but many neurologists believe that seizures lasting less than 30 minutes do not cause permanent brain damage. Thus rescue medications can be used in two different scenarios: 1. To stop a period of status epileptivuc 2. To terminate a cluster of discrete events which occur within a defined time period.
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Epilepsy Minnesota | 3
Rescue Medications (Continued from page 3) When choosing a rescue medication, the ideal medication should enter the body quickly, calm the excited brain activity producing the seizure, and hopefully have few side effects. Globally, the first line medications most often used to stop seizures in an emergency are known as benzodiazepines. Benzodiazepines are a class of medications that interact with brain GABA receptors that help to calm excess excitable brain activity. Examples of benzodiazepines include Valium (diazepam), Ativan (lorazepam), Versed (midazolam), and others. The medications vary in regard to their length of effect, stability of medication if not refrigerated and full side effect profile. Most benzodiazepines cause sedation, may worsen balance, and may increase drooling. In otherwise healthy patients, the benefits of use in stopping a seizure before brain damage occurs far outweigh the risks. Most side effects wear off in 24 hours. Certain individuals on multiple medications which produce sedation or who have lung problems may be at risk for excess benzodiazepine side effect. Discussion with a neurology professional should address the unique issues surrounding each individual in such circumstances.
Different benzodiazepines are available in different forms including pills, liquids, and injectable forms (intravascular or intramuscular). In the United States a rectal gel form of diazepam has been a mainstay of treatment for status epilepticus. It is absorbed quickly, and avoids the need for swallowing in an unconscious patient. Many of the benzodiazepines can be absorbed through the cheeks and gums in small volumes. For many adults and adolescents with epilepsy this route is much preferred to a rectal formulation. Auto-injecting forms (like the epinephrine “pens” used for those with severe allergies who are exposed to a triggering agents) are also being developed for emergency use with medication being delivered into the muscle. Rarely patients have adverse reactions to the benzodiazepine class of medications and alternative protocols must be developed in a custom manner to manage their prolonged seizure events. Neurologists have different preferences and comfort with the various protocols available. You should discuss with your provider if you would benefit from a rescue protocol and which might be best for you.
Spring cleaning? Think of EFMN! We collect used clothing and home items, with 100% of the proceeds supporting our programs/services. Schedule a convenient pick up at efmn.org today!
CONFERENCE July 17, 2014 from 9 AM – 4 PM Radisson Duluth Harborview Participants gain access to experts in the field of epilepsy and exclusive educational materials. Keynote speaker Michelle Welborn, Founder of the Intractable Childhood Epilepsy Alliance (ICE) will share insights. This conference is recommended for professionals, who earn 5 CEUs for just $30 (people with epilepsy attend for free). Registration opens April 30 at efmn.org.
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www.efmn.org
Seizures Don't Stop Me By Alyce Sala Tenna
Alyce contacted Vicki Kopplin
is no easy feat, particularly when you have a medical
after seeing EFMN’s local
condition! On three separate instances I was found on the
epilepsy awareness efforts
footpath in the suburb I live in, having a tonic-clonic seizure
online, to thank EFMN for
(which required the assistance of paramedics). I even had
raising awareness. Here is her
a seizure out running on the morning I was scheduled to
story…
travel to the U.S. I was advised by doctors at the emergency
My name is Alyce Sala Tenna and I’m a passionate environmental scientist who hails from Perth, Western
department about the risk of flying (I had hit my head when I fell) however, I was unwilling to defer my travel. I was determined to achieve what I had dedicated myself to many months ago.
Australia. I was diagnosed with
Race day was typical of perfect conditions, and Chicago
epilepsy at age twelve, following
was abuzz with anticipation for the race. A marathon is
a motor vehicle accident. Until two years ago, my seizures
obviously unlike any experience I had endured before. The
were well-controlled, but unfortunately I have been not been
first half was pleasant and enjoyable, however by the 36km
stable since mid-2012. This experience led me to realize
mark I felt gelatinous with fatigue – regardless of having a
the loss of independence you suffer with epilepsy, and the
medical condition! However, I finished the 42.2km race in the
problematic social stigmas and ignorance around epilepsy.
stunning Grant Park in 5 hours and 38 seconds exactly.
So when the opportunity arose to run the Chicago marathon late last year, I committed, to prove to both myself and inspire others that seizures indeed, do not stop you. It took eight months of training, required extreme dedication
So here’s a quick message to say: don’t let seizures stop you! My first training run was a struggle of 5km, and now I’ve ran a marathon, and continue to run every day to clear the fog and all the other woes of life that may persist in the way.
of early mornings and running plans. Training for a marathon
Epilepsy in the News • In March, Upsher-Smith received FDA Approval For Qudexy™ XR (Topiramate) Extended-Release Capsules. This once-daily drug is for patients age 10 years+ with partial-onset seizures or primary generalized tonic-clonic seizures. Read more at efmn.org. • Two new Smart Phone app studies will be presented at the American Academy of Neurology's 66th Annual Meeting in Philadelphia in April that could help people detect seizures and receive better treatment for stroke. Read more at AAN.com. • Travel scholarships are available via the J. Kiffin Penry Patient Travel Assistance Fund to reimburse individuals who travel 50+ miles from home to receive FDA-approved medical care for seizures (and lack financial options). Up to $1,500 is available within a two-year time period. Contact kryan@efmn.org or 800.779.0777, ext. 2303.
www.efmn.org
Epilepsy Minnesota | 5
EFMN in Action
Proudly serving people across MN and ND MN State Capitol Advocates gathered in the MN State Capitol rotunda in March to raise epilepsy awareness.
The Creative Arts Program The Creative Arts Program is now accepting Cadenzas video entries, and celebrating 10 years of Brainstorms visual arts. Join our open house at EFMN on Thursday, April 24 to celebrate talented artists!
Lester Park Elementary Students at Lester Park Elementary in the Northland region got “seizure smart� in March.
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www.efmn.org
Rise Above Seizures With Us Rise Above Seizures Balloon Launch - May 15 @ 2pm For our 60th anniversary, we'll be releasing 60,000 balloons in recognition of the 60,000 people in our community with epilepsy. This is 60,000 PEOPLE IN OUR COMMUNITY HAVE EPILEPSY. Let’s Rise Above Seizures.
an eco-friendly event, cleared with
Rise Above Seizures - DONATE This year marks EFMN’s 60th year of providing essential programs and services for people with epilepsy and the greater community. This year, with your support you can extend the Foundation’s reach:
both the MN Pollution Control Agency
•
Make your annual gift online, by phone or by mail
and the MN Department of Natural
•
Designate EFMN as a beneficiary in your will, IRA
Resources.
or life insurance
To get your FREE balloons, go to
•
Take advantage of your company’s matching gift
program and double your impact
•
Share your support of EFMN with your community
RiseAboveSeizures.com.
To learn more about the impact of giving, contact Hannah Baines at 651.287.2319 or hbaines@efmn.org.
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 for FREE at efmn.org or call 800.779.0777, ext. 2310 for assistance.
www.efmn.org
Epilepsy Minnesota | 7
Nonprofit Org. U.S. Postage
Connect with us!
1600 University Avenue West, Suite 300 Saint Paul, MN 55104 www.efmn.org
PAID Twin Cities MN Permit No. 32600
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.
RISERise ABOVE AboveSEIZURES Seizures andAND StrollSTROLL with us onWITH AugustUS 7 ON AUGUST 7, 2014 The Stroll for Epilepsy is the LARGEST fundraising/awareness event in MN & ND to benefit the 60,000 people withSeizures epilepsyand in our community. Registration Rise Above Stroll with us on August 7 opens April 15 at efmn.org or call 800.779.0777, ext. 2322. To celebrate our 60th anniversary, we’re doing things bigger and looking forward to seeing lots of people at the Stroll! The Stroll for Epilepsy is the LARGEST fundraising/awareness event in MN & ND to benefit the 60,000 people with epilepsy in our community. Registration opens April 15 at efmn.org or call 800.779.0777, ext. 2322. To celebrate our 60th anniversary, we’re doing things bigger and looking forward to seeing lots of people Stroll!
Join us! Stroll for Epilepsy
August 7, 2014
Events Calendar Twin Cities Area TWIN CITIES EAST METRO ADULT CONNECT MEETS THE 1ST THURSDAY OF EACH MONTH April 3, May 1, June 5 6:30-8 PM EFMN Office 1600 University Ave. W., Suite 300 in St. Paul (16, 21, 50 & 84 bus lines) Connect with other adults affected by seizures inperson or join us from the comfort of your home via conference call. RSVP encouraged. Contact dwhite@efmn.org for call information. TWIN CITIES WEST METRO ADULT CONNECT Meets the 2nd Thursday of each month April 10, May 8, June 12 6:30-8 PM Southdale Library 7001 York Avenue South in Edina In April, Lisa Van Ahn will lead a session on health and wellness. A Metro Transit representative will discuss using public transportation in May. RSVP encouraged. CREATIVE ARTS CELEBRATION Thursday, April 24 5-6:30 PM EFMN Office 1600 University Ave. W., Suite 300 in St. Paul Celebrate artists, writers and performers who have contributed to Creative Arts in the last ten years. Snacks and refreshments are provided. ADULT PICNIC Thursday, July 10 5-8 PM Lake Harriet Beard’s Plaissance Shelter 4135 W. Lake Harriet Parkway in Minneapolis
Duluth YOUNG ADULT SAINTS GAME Monday, June 9 6:30 PM Midway Stadium 1771 Energy Park Drive in St. Paul Young adults, visit Midway Stadium before its facelift. Tickets are FREE for people with epilepsy, $5/additional ticket. Tickets are limited; reserve yours today. RSVP required by June 3. STUDIO E: ART THERAPY PROGRAM Tuesdays (April 29 - June 17) 6-8 PM Adler Graduate School 1550 E 78th Street #A in Minneapolis Explore self-expression, relaxation and various art mediums in a supportive environment. Open to adults and youth (9+) with epilepsy. Youth & adults will have their own groups. This is an 8-week program with RSVP required by April 22. TWIN CITIES PARENT CONNECT Tuesday, April 8 6:30 – 8 PM EFMN Office 1600 University Avenue W., Suite 300 in St. Paul Join parents of children with epilepsy to learn more about managing expectations for yourself and your family. Heather and Libby McGraw, mother and daughter, will share their story. Free parking available in ramp on Spruce Tree Drive. RSVP encouraged.
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. FAMILIES CONNECT Meets the 1st Monday of every other month April 7, June 2 6-7:30 PM Duluth Gospel Tabernacle Fellowship Hall basement, 1515 W. Superior St. in Duluth Families affected by epilepsy connect, share stories and support each other. Enjoy dinner with your whole family! Kid-friendly activities are provided. RSVP encouraged. CHILDREN’S MUSEUM April 27 12-3:30 PM 115 South 29th Avenue W. in Duluth Come explore the museum! Kids create art, imaginary play; build a satellite, magnetic balls and tracks, and money matters. Staff led activities at 1 & 3 PM. FREE for people with epilepsy, $6/ additional ticket. Adult chaperones are free. RSVP encouraged. WOMEN CONNECT Meets the 3rd Tuesday of every other month May 20 6:30-8 PM St. Luke’s Hospital 915 East 1st Street in Duluth
Share a picnic dinner provided by EFMN with others affected by epilepsy. Friends and family are welcome. Enjoy outdoor games and group activities. RSVP encouraged by July 7.
www.efmn.org
ADULT CONNECT Meets the 2nd Thursday of each month April 10, May 8, June 12 5:30-7 PM Essentia Health SMDC 400 East 3rd Street in Duluth
Diane White - Twin Cities Program Manager dwhite@efmn.org 651.287.2312
RSVP : 800.779.0777, ext. 2310 or rsvp@efmn.org
Nikki Baker - Twin Cities Senior Program Manager nbaker@efmn.org 651.287.2308
Amanda Pike - Twin Cities Program Manager Education apike@efmn.org 651.287.2313
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. Lisa Peterson - Duluth Outreach Coordinator lpeterson@efmn.org 218.624.1330
Duluth DULUTH HUSKIES GAME June 22 3:05 PM Wade Stadium Interstate 35 & 34th Avenue West in Duluth Come watch the Duluth Huskies face the Mankato Moon Dogs! FREE for people with epilepsy, $5/additional ticket (hot dogs and soda included). RSVP required by June 15.
Fargo PARENT CONNECT Meets the 1st Tuesday of each month April 1, May 6, June 3 7-9 PM Pediatric Therapy Partners 3060 Frontier Way S. in Fargo In April we’ll discuss traveling and epilepsy. May’s discussion will include “brain basics:” understanding the basic lobes of the brain and how they are impacted by seizure activity. June will be an open discussion. RSVP encouraged. ADULT CONNECT Meets the 1st Monday of each month April 7, May 5, June 2 6-8 PM Sanford Health South University Campus Conference Room 1A-1 In April, we will discuss special considerations around traveling with epilepsy. Dr. Samaraweera from Sanford Health will share a basic overview of EEGs in May. June’s discussion will include how EFMN can offer assistance & support you. RSVP encouraged. FAMILY PICNIC June 24 6-7:30 PM Lindenwood Park, Rotary Shelter in Fargo All are welcome to join us for a picnic in the park! Playground available for kids. Main meal, beverages and dinnerware supplied. Please bring a dish to share. RSVP encouraged by June 17. Amy Haugen - Fargo Outreach Coordinator ahaugen@efmn.org 701.429.1165
Rochester
St. Cloud
ADULT CONNECT Meets the third Monday of each month April 21, May 19, June 16 6:30-8 PM People’s Co-op Food Store 519 1st Avenue SW in Rochester
ADULT CONNECT Meets the 1st Thursday of each month April 3, May 1, June 5 7-8:30 PM Great River Regional Library 1300 W. St. Germain Street in St. Cloud Join us in the meeting room on the first floor to connect with other adults and parents affected by seizures. RSVP encouraged.
Join us for an evening of conversation and connection with other adults affected by seizures. Meeting will be held in the dining room. RSVP encouraged. ROCHESTER HONKERS BASEBALL GAME June 18 7 PM Mayo Field 307 East Center St. in Rochester Cheer on the college-age “boys of summer” as the Honkers take on The Thunder Bay Border Cats. FREE for people with epilepsy, $5/ additional ticket. RSVP required by June 2.
ST. CLOUD ROX GAME Tuesday, June 24 6 PM PICNIC / 7 PM GAME Joe Faber Field at Municipal Athletic Complex 5001 Veteran’s Drive in St. Cloud Enjoy an evening of baseball and a pregame picnic as the St. Cloud Rox take on the Alexandria Blue Anchors! FREE for people with epilepsy, $5/additional ticket. Pre-game picnic starts at 6:00 PM. RSVP required by June 19.
RSVP : 800.779.0777, ext. 2310 or rsvp@efmn.org Vicki Snyder - Rochester Outreach Coordinator vsnyder@efmn.org 507.287.2103
Lori Braegelmann - St. Cloud Outreach Coordinator lbraegelmann@efmn.org 320.203.9722
Rise Above Seizures Eco-Friendly Balloon Launch May 15, 2 pm
60,000 PEOPLE IN OUR COMMUNITY HAVE EPILEPSY. Let’s Rise Above Seizures.
For our 60th anniversary, we'll be releasing 60,000 balloons in recognition of the 60,000 people in our community with epilepsy. To get your FREE balloon, go to RiseAboveSeizures.com. • Duluth launch site: Savers Store, 1740 Mall Drive • Fargo launch site: Lindenwood Park, water fountain entrance • Rochester launch site: Savers Store, 1201 S. Broadway • St. Cloud launch site: Savers Store, 3326 W. Division Street • Twin Cities launch site: TBA
www.efmn.org