Transition Tips: Childhood to Adulthood We Created a Movement Seizures Don’t Stop Me Thanks For Strolling With Us 3 9 12 8 Learn About Epilepsy Midwest Seizure Smart Fall Conference on November 2 – see page 6 A QUARTERLY PUBLICATION OF THE EPILEPSY FOUNDATION OF MINNESOTA FALL 2013 WWW.EFMN.ORG MINNESOTA
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Transition Tips: Childhood to Adulthood
We Created a Movement
Seizures Don’t Stop Me
Thanks For Strolling With Us
3
9
12
8
Learn About EpilepsyMidwest Seizure Smart Fall Conference on November 2 – see page 6
A qUArTErLy pUbLiCATion oF ThE EpiLEpSy FoUnDATion oF MinnESoTA FALL 2013
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.
1600 University Avenue West | Suite 300 | St. Paul, MN 55104www.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.
oFFicersPresident Brett BoyumPast President Ann S. Kelly JonesVice President Tim GallagherTreasurer Elizabeth Beastrom
Appointed MeMbers
Jason Engkjer – Legal CounselTabitha Fields Marcus Fischer Brandon MegalMichael Gonzales Deb MeyerMike MurrayWendy OsterbergJim SilburnTom SpiczkaJessica Stoltenberg Trudi TryslaChristopher Turoski Randy UnzickerBill Walsh
proFessional advisory BoardChair | Chair | Tess Sierzant, MS, RN, ACNS-BC, CNRN | Saint Joseph’s HospitalAnne Barnwell, MS, CRC | Epilepsy Advocacy & Employment GroupJeannine Conway, PharmD, BCPS | University of MinnesotaArmantina Espinosa, MD | Minneapolis Clinic of NeurologyTimothy Feyma, MD | Gillette Children's Specialty HealthcareMiguel 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 Nickels | Mayo ClinicPatricia Penovich, MD | Minnesota Epilepsy GroupKathleen Rieke, MD | CentraCare Health SystemFrank Ritter, MD | Minnesota Epilepsy GroupJoanne Rogin, MD | Midwest Center for Seizure Disorders Teresa Tran, MD | Park Nicollet
Thank you to the thousands of you who answered the recent call to stand up to local media suggestions that gopher Football Coach Jerry Kill was unworthy of his job due to his seizures.
We started a movement together and we’re working to continue the momentum into 2014, when EFMn celebrates 60 years of serving people with seizures.
This issue contains a number of educational opportunities…from school nurse trainings, to Seizure Smart Community Workshops, to our fall conference and more! There are plenty of ways to get involved and connect with others this fall.
Clinicians Corner Transition Tips: Childhood to AdulthoodBy Professional Advisory Board Member Jeannine Conway, PharmD, BCPS and Katherine Nickels, MD
The transition of children into adolescence and adulthood
can be exciting for children and their parents. however,
this can also be a time for anxiety, especially for children
with chronic health conditions. preparing children and their
families is important to make this transition a success.
When does my child need to transition to the
adult clinic?
While the age for transferring to the adult clinic varies, most
children do so between the ages of 18-21 years. however,
the transition process should be gradual and start around
the age of 12 years. This allows the child to take on steadily
increasing responsibility for their medical condition, while still
being supervised by their parents.
Who should be involved in the transition process?
This transition process should be a joint effort involving
the child, parents, primary care physician, and specialists.
parents and children should start planning for life after high
school. They should consider the degree of independence
they expect from their child: whether their child will live at
home, independently, or in supported housing and whether
their child will be able to work or have more education after
high school. The physicians need to work together to ensure
that the adult care team has all the important information
regarding your child’s health.
Continued on page 4
4 | Epilepsy Minnesota www.efmn.org
often, a social worker can help identify needs you may have
and programs available, such as insurance coverage and
legal documents that may need to be signed once the child is
18 years.
How can i prepare my child?
As children become adolescents, they often want more
independence. This includes managing their medical needs.
in order to do this, adolescents need to have a better
understanding of their medical conditions, which may include
more than epilepsy.
one of the most important responsibilities is managing
medication. This includes remembering to take medication
regularly. There are many ways to remember your
medications. pills boxes, while not glamorous, serve two
important purposes: 1. you can see if you forgot to take
your medicines (and if you did forget you can make them
up as directed by your prescriber) and 2. you can see if you
took your medicines (so you don’t accidently take too much
because you forgot you already took them). There are many
other alternatives including apps for smart phones that help
people track medications, calendars, alarms or custom
packaging by the pharmacy. The only right method is what
works for you.
once children show they can do this, they should also begin
interacting with the pharmacy and staff to get prescriptions
filled. here are some key points to help with this process:
• the pharmacy staff is available to help you and
answer any questions you have.
• Most prescriptions are refillable for a maximum
of 12 months from the day they are written. if
the medication is a controlled substance it is only
refillable for 6 months.
• the dates are on the bottle so you can always
tell how many refills are available and when the
prescription expires.
• do not run out of pills before calling the
pharmacy to request a refill.
• it is best to call when you have 5 days of
medicine left. if you call with too many pills left,
insurance may not allow the prescription to be
filled. if you call when you are out of pills, you
may miss doses if the prescriber needs to
authorize more refills or if the pharmacy doesn’t
have your pills in stock.
• Keep your bottle. it has all the information
needed to get a refill.
• Having the phone number for the pharmacy
and the prescription number allows you to use
the automated refill phone systems that most
pharmacies have.
• You may also find signing up for auto-refills
makes it more convenient to get your refills.
Adolescents also need to feel comfortable calling their
physicians’ offices and speaking to their physicians. They
should start calling to schedule appointments on their own
and should be the one to talk with the physician during visits
as much as possible. Adolescents must able to identify any
symptoms or concerns for which they should be contacting
their physician and know which physician to contact. This
can be a particularly challenging step for children and their
parents, but will become easier with practice.
How can my child’s physician help?
good communication between providers is essential. your
child’s neurologist may be able to identify potential adult
providers to provide your child’s ongoing care and make the
appropriate referrals. he/she can also provide a summary
letter introducing your child to the new provider. Finally, you
should also be provided with a copy of your child’s medical
record.
Transition Tips: Childhood to Adulthood(Continued from page 3)
www.efmn.org Epilepsy Minnesota | 5
EFMN in ActionProudly serving people across MN and ND
rally at tCF bank- stadium
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.
rep. Kline Award includes eFMn
representative John Kline was awarded for his work championing healthcare issues, and invited EFMn to take part in the ceremony for its work on behalf of people with seizures.
Young Adults at Mill City
Several young adults gathered at Mill City Museum and enjoyed making connections with others.
6 | Epilepsy Minnesota www.efmn.org
Education Opportunities
MIDWEST SEIZURE SMART FALL CONFERENCE
saturday, november 2
9am – 4pm
radisson blu Mall of America
Free to people with epilepsy;
$40 registration for others
Five CEUs are awarded to professionals! includes breakfast,
lunch, educational materials and parking. Topics include:
• What to know about “obamacare”
• To service animal, or not to service animal?
• An attorney talks workplace rights
• healthy ideas beyond medication
• information panel on the rare Epilepsies
register at www.efmn.org or call 800.779.0777, ext. 2310.
SEIZURE SMART SCHOOLS
School is back in session - is your school seizure smart?
We provide free in-person training (where available) for staff
and students. you can also get a FrEE classroom kit to
share with your child’s classroom. Visit www.efmn.org and
select “Seizure Smart Schools” under the progrAMS
section to find helpful forms to use with your school.
We train school nurses too! A school nurse and health
staff webinar is scheduled for Wednesday, oct 2 from
4:30-6:30pm. These webinars are available throughout
(email address required for gifts made by credit card)
Making a difference by honoring or remembering someone special. this gift is:
❏ in honor of______________________________________❏ in memory of ___________________________________________
Make an impact – Leave a Legacy – Learn More About planned giving opportunities
❏ i have included EFMn in my estate plans, please contact me at _________________________________________________
❏ i would like more information, please contact me at ____________________________________________________________
✂Mail this pledge form to: Epilepsy Foundation of Minnesota, 1600 University Ave. Ste. 300, St. paul, Mn 55104
www.efmn.org Epilepsy Minnesota | 11
Steve Stoterau – paying it forward and making a difference. in 2013, Steve Stoterau decided to give a generous gift in
honor of his father, Donald Stoterau, to support Camp oz by
providing full scholarships to campers. Steve became involved
with the Epilepsy Foundation of Minnesota in 1979 through
Adult Connect support groups. he made lasting friendships
within the group, and with Foundation staff.
Steve grew up on a farm near hamburg, Mn, never thinking
about his epilepsy and what he “couldn’t do.” he participated
in wrestling, baseball and basketball and was chosen as
“Citizen of the year” in his 1972 high school graduation class.
his participation in team sports made Steve feel supported.
Everyone knew he had epilepsy but it didn’t impact his
friendships or his abilities on or off the field.
Steve attended summer camps through his church while
growing up, but he was certain nobody knew about his
epilepsy. in making his decision to give to Camp oz Steve
said, “i know i have gone through so many years of this
[epilepsy], and i know young people need to feel supported.
Camp oz does that.”
Looking back on his life, Steve believes his epilepsy made him
a stronger person. This summer, Steve toured Camp oz with
Vicki Kopplin, executive director of EFMn, and was able to
see the real impact of his gift. he also spent time with camp
medical and leadership staff, to learn more about the care
provided to campers. Steve said, “The kids at camp are so
happy. They will remember their days at Camp oz for the rest
of their lives.”
in addition to Steve’s generous camp support, he is
passionate about epilepsy awareness and education. he has
engaged local lawmakers and media in epilepsy education
workshops in glencoe, Mn, where he resides. in 2011, Steve
served as a key volunteer in hutchinson during the Seizure
Smart Communities program.
Engaging with EFMn as a donor and seeing the impact of his
giving, Steve said, “this brought me closer to the Foundation.
i am a part of the Foundation, and the Foundation is a part of
me.”
Michael Frost, MD nikki baker Steve Stoterau
12 | Epilepsy Minnesota www.efmn.org
Thank You For Strolling With UsThank you to the 275 teams that Strolled with us in 2013!
The stories/loved ones represented by each team are
empowering and extraordinary. Five locations across Mn and
nD were packed with people helping support our vision to
help people with epilepsy realize their full potential.
THANK YOU GRAND CLUB TEAMS AND THEIR CAPTAINS, WHO RAISED OVER $1,000:
THANK YOU TITLE SPONSORS:Lundbeck, inc.
Upsher-Smith
Team and event photos from each location are available at
www/efmn.org/stroll.
Abby's AvengersAdam's LKS Super heroesAlison LAll for AlyssaAllie's Armybeen Walking for ben-jaminbraden's pitcrewbraegelmann brigadebrenden's believersbrief pausebright Sparksbrynn's backersbSE Epilepsy StompersCoaches Wives go-pher Epilepsy AwarenessCoco's CrewColton's All-StarsCultivating a CureEhresmann End to EpilepsyElectric EnergyElena's StrollersEpiTrekkersErin's Entouragegabe & Josh's Football Teamgillette Super Strollersgoal gettersgreen Cheesehannah's bananashArLoW'S hopEhayden's heroesJenna bear's paw poundersJordan buisman Memorial TeamJordan's JammersJourney for JessKayla's KrewLiam's Lucky Charms
Lovely LilyMartice's MauraudersMinnesota Epilepsy groupMore CowbellMovers and Shakersneon ninjasneuronsUnitenolan's Crewnorah's pink Tigersone in A Millionpeterson possepeyton's platoonroaring ThunderSara's StrollersSauntering with Schindler SpiritSaversSergeant Cecilia's All Star TeamSpike & WaveSteph AtwellTeam brandalynTeam CaitieMaeTeam CardinalsTeam hhTeam LTeam LincTeam MaddieTeam Mathew and hunterTeam TannerTeam TravisTeam TrEnTThe Movers and ShakersTootsie's TrekkersWalk with graceWinge WarriorsWyatt's WarriorsZ power
www.efmn.org Epilepsy Minnesota | 13
november is national epilepsy awareness month. This
newsletter contains pAgES of events and ways to get
involved during awareness month. here are some additional
ideas:
- Attend the Midwest Seizure Smart Fall Conference or
our Seizure Smart Community Workshops to learn
more about epilepsy (see page 6 for details).
- Catch the october go-pher Epilepsy Awareness
football game on october 26! it’s our second year
partnering with rebecca Kill to help raise awareness
among the fans at TCF bank Stadium, and thousands
more watching on TV.
- participate in our Creative Arts program! october
31 is the deadline to submit a written work to the
Epilogues collection. And see the talents of artists,
writers and performers with epilepsy at the Creative
Arts program Showcase on Sunday, november 10
at patrick’s Cabaret in Minneapolis.
- Ask your friends and family to follow us on social
media spaces to increase the reach of our awareness
and education efforts.
November Awareness Month
We think all youth with epilepsy are special – in fact we think they are Shining Stars! The Shining Star program, our largest youth program, recognizes youth with epilepsy, making them feel less isolated by connecting them with other youth with epilepsy.
There is no cost to be a Shining Star and ages 18 and under are welcome. Join Shining Stars at www.efmn.org and complete the registration form, or call 800.779.0777, ext. 2310. We’ll help you shine!
Shining Stars receive:
• A star medallion• program certificate• Special invitations to EFMn events throughout the year• bEST oF ALL – opportunities to connect and meet other Shining Stars and their families.
shining sTar annual evenTsunday, october 611 aM – 1:30 pMComo Park Zoo and Conservatory1225 Estabrook Drive in St. Paul
Shining Stars from across MN and Eastern ND, please join our annual celebration! Enjoy lunch and mingling with others, then a scavenger hunt and exploration of the Como Zoo and Conservatory. Free for Shining Stars and 1 parent; $10 for each additional attendee. Meet in Bullard Rainforest Auditorium. RSVP encouraged, space is limited.
easT MeTro adulT connecTMeets the 1st Thursday of each monthoctober 3, november 7, december 56:30-8 pMEFMN Office1600 University Ave. W., Suite 300 in St. Paul(16, 21, 50 & 84 bus lines)
Connect with other adults affected by seizures in St. Paul, or join us from the comfort of your own home via GOTO Meeting. December is a holiday potluck celebration. RSVP required for GOTO meeting.
WesT MeTro adulT connecTMeets the 2nd Thursday of each monthoctober 10, november 14, december 126:30-8 pMSouthdale Library7001 York Avenue South in Edina
Join us and connect with other adults affected by seizures. In October Erica Egge will share her memoir “Living in a Brainstorm.” December will be a holiday potluck. RSVP encouraged.
MidWesT seiZure sMarT Fall conFerencesaturday, november 29 aM – 4 pMThe Radisson Blu Mall of America2100 Killebrew Drive in Bloomington
Topics include: What to know about “Obamacare”, is a service animal right for you, workplace rights and healthy ideas beyond medication. Registration is $40 and FREE to people with epilepsy. Five CEUs are awarded to professionals! Includes breakfast, lunch, educational materials and parking. Register at www.efmn.org or call 800.779.0777, ext. 2310.
creaTive arTs prograM shoWcasesunday, november 102-5 pM (program starts at 3)Patrick’s Cabaret3010 Minnehaha Avenue S. in Minneapolis
Our annual Creative Arts Program Showcase celebrates artists, writers and performers affected by seizures. Hear their inspiring stories and enjoy their talents Light refreshments are provided at this free event. RSVP encouraged.
TWin ciTies parenT connecTTuesday, november 126:30-8 pMEFMN Office1600 University Ave. W., Suite 300 in St. Paul(16, 21, 50 & 84 bus lines)
Ryan Hoffman, special needs representative from UCare, will join us to discuss special needs basic care plans, designed for people with a diagnosed disability. We’ll discuss options, benefits, wellness benefit, enrollment requirements and ways to enroll. RSVP encouraged.
young adulT MeeT-upThursday, november 217:45-9:45 pM ComedySportz3001 Hennepin Ave in Minneapolis
Join other young adults for a night of fun and laughter during an improvised show! FREE to people with epilepsy; $6 per additional guest. RSVP required by November 18.
epilogues WriTing collecTionFinal call for entriesseptember 1 – october 31Submit your written works to [email protected]. Details at efmn.org.
DuluthadulT connecTMeets the 2nd Thursday of each monthoctober 10, november 14,december 125:30-7 pMEssentia Health - SMDC400 East 3rd Street in Duluth
Join us in the Minnesota Room across from the 1st floor cafeteria with facilitator Kyah Altiere, for conversation, support and connection.
Fun on The FarMsaturday, october 121-4 pMSimek’s Farm8997 Arkola Road in Kelsey
All ages invited! Enjoy the corn maze, hayride, s’mores and barnyard fun! FREE for people with epilepsy; guests over age 2 are $3. RSVP required by October 10.
adulT connecTMeets the 3rd Tuesday of each monthoctober 15, november 19 6:30-8 pMRochester Area Family Y709 1st Avenue Southwest in Rochester
October’s topic is Ketogenic diet, Laura Rohrbaugh is the featured speaker. November is a discussion about seizure recognition and response. RSVP encouraged.
open house Wednesday, november 20 9-10:30 aM Press Coffee and Tea 315 S. Broadway in RochesterTake home up-to-date information on the latest seizure information. Free beverages and refreshments provided while connecting with other families. RSVP encouraged.
FesTival oF Treesnovember 27-309-10:30 aMMayo Civic Center30 Civic Center Drive S.E. in Rochester
Come and admire the first-ever EFMN tree at the Festival of Trees. View over 100 glittering trees and feel the holiday spirit! $5/person.
day WiTh sanTaFriday, november 2911 aM - 2 pMMayo Civic Center Drive30 Civic Center Drive SE in Rochester
Enjoy your visit with Santa, playing games, making crafts and having a snack. Pictures will be taken in front of the EFMN holiday tree! Meet at 10:45 a.m. in front of the Civic Theatre entrance. $5/person. RSVP
parenT connecTMeets the 1st Tuesday of each monthoctober 1, november 5, december 37-9 pMPediatric Therapy Partners3060 Frontier Way South in Fargo
October we’ll discuss “taking care of you.” In November, Heather Werdel from Cyberonics will speak about Vagal Nerve Stimulators. December is our annual holiday celebration for the whole family - bring a treat to share! RSVP encouraged.
adulT connecTMeets the 1st Monday of each monthoctober 7, november 4, december 26-8 pMSanford Health South University CampusConference Room 1A-1
October topic will be art and epilepsy. In November, Heather Werdel from Cyberonics will speak about Vagal Nerve Stimulators. December is our annual holiday celebration for you and your support system - bring a treat to share! RSVP encouraged.
WoMen connecTMeets the 4th Wednesday every other monthnovember 206:30-8 pMSt. Luke’s Hospital 915 East 1st Street in Duluth
Please join us for an evening of conversation and connecting at our holiday social! Bring an appetizer to share and meet in room 337. Take elevators to 3rd floor across from cafeteria entrance. RSVP by November 9.
St. CloudadulT connecTMeets the 1st Thursday of each monthoctober 3, november 7, december 57-8:30 pMGreat River Regional Library, first floor meeting room1300 West St. Germain Street in St. Cloud
Adult Connect is open to all adults living with epilepsy, including parents. Join us for a time of support, conversation and information on living well with epilepsy. RSVP encouraged.
Boo aT The Zoosaturday, october 121-3 pMHemker Park and Zoo26715 County Road #39 in FreeportDress in your Halloween costume and enjoy autumn at the zoo, while connecting with families affected by seizures! Snacks are provided. Free to people with epilepsy; $3 per additional guest. RSVP required.
www.efmn.org Epilepsy Minnesota | 15
1600 University Avenue West, Suite 300Saint Paul, MN 55104www.efmn.org
Nonprofit Org.U.S. Postage
PAIDTwin Cities MN
Permit No. 32600
Cleaning Your Closet supports people with epilepsy
The Foundation collects used clothing and home items, with 100% of the proceeds supporting our programs/services. please consider us anytime you’re cleaning closets, as nearly hALF of our budget comes from our used clothing operation.
schedule a convenient pick up at www.efmn.org or call 651.287.2300, ext. 3 today!
Connect with us!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.