2016

As research into epilepsy causes and

treatment soars the Epilepsy

Foundation has teamed up with 22

Rare Epilepsy Foundations to build a

comprehensive patient registry. The

Rare Epilepsy Network (REN) gathers

and keeps information to support

and encourage research into the

conditions. The patient-centered

research hopes to identify

individuals at risk, help researchers

understand the rare epilepsies, help

others obtain early diagnosis,

develop better treatments, identify

causes and improve quality of care

for people living with rare epilepsy.

Syndromes such as Lennox-Gastaut,

Dravet, Doose, Infantile Spasms,

Rett, Aicardi and Tuberous Sclerosis

are among the 22 different rare

conditions that are currently

represented in the network.

Individuals or care-givers may learn

more about the registry, the many

different syndromes and enroll

on-line at the Rare Epilepsy

Network http://ren.rti.org, email

ren@efa.org or call the Epilepsy

Foundation at 888-886-3745.

Enrollment is a matter of filling out

a questionnaire / medical history.

All information is stored in a secure

data base and information is shared

with researchers without names or

identifying information.

Adapted from www.epilepsy.com/ren

RARE EPILEPSY NETWORK EPILEPSY FOUNDATION

HEART OF WISCONSIN

CELEBRATES 35 YEARS

PROVIDING SERVICES IN

WISCONSIN

Epilepsy “self-management” consists of everything a person does to help

manage seizures and their effect on daily life. It does not mean managing

epilepsy alone. Your medical provider/team is critical for your best care, but

there are things a person can do to increase the effectiveness of treatment.

Termed as “self-management tools” they help you:

Communicate with your health care team more effectively.

Keep track of your treatment plan, updates and changes as you go along.

Develop a first aid plan that works for you and share it with those in your

life that may need to respond to your seizure.

Know what you can do to prevent seizure emergencies.

Take necessary steps to stay physically safe.

Recognize any seizure triggers you may have and adjust your lifestyle

accordingly.

Understand and manage any other health conditions you may have.

Epilepsy Foundation staff are prepared to work with individuals on any or all

of these issues. Support groups often are a source of good ideas to help with

self-management. Epilepsy.com and other sources of information can help

you keep up to date with new developments in the realm of epilepsy care.

Adapted from www.epilepsy.com

EPILEPSY SELF-MANAGEMENT

IMPORTANT PART OF PATIENT-CENTERED CARE

Arthur Taggart (left) Executive Director Epilepsy Foundation Heart of Wisconsin welcomes guest speaker Thomas Sutula, MD (right) of University Hospital Epilepsy Clinic to the agency’s annual dinner at the Edgewater in Madison November 6, 2015. Dr. Sutula shared fascinating research and treatment techniques on the horizon; a hopeful look into the future of epilepsy understanding and care.

2

Epilepsy Foundation Heart of Wisconsin

Arthur Taggart Executive Director

Meet Your Staff

HIGHLIGHT VOLUNTEERS

On the web

and social media

www.epilepsywisconsin.org

info@epilepsywisconsin.org

@EFHOW

Epilepsy Foundation Heart of Wisconsin

Volunteers are the heart of any non-profit organization and ours are

especially critical to the advancement of our goals and services. The Board

of Directors are committed volunteers who guide our operations (see back ).

Deb Erickson of Merrill has been key to the success of over 30 annual

fundraising events. She brings Hardees and other sponsors,

multi-media publicity, personal donations and recruits a team of

dedicated volunteers.

Evan Sandok, MD of Marshfield Clinic has been chairman of our annual

“Advances in Epilepsy Treatment“ conference for the past 15 years. He

is a top rated speaker himself and he enlists experts statewide and

from across the country for our premier educational event.

Shonda Crapp is one of 8 moms from Lancaster, who rallies a town

together to raise over $20,000 a year for epilepsy research.

Rama Maganti, MD of University Hospital Epilepsy Clinic in Madison

shared his expertise of tertiary care during six Epilepsy Update dinner

meetings across the state in just one year. More to come.

Top fundraisers at our events include Carissa Marie, Ken and Michelle

Meurett, Marla and Jim Abstetar, Maureen Stemmelen, Emily Benishek

Enthusiastic “all-around” volunteers include Heather Adler, Sharon

Behrend, Jackie Brummund and Mike Chadima.

We are proud to say over 200 people volunteer every year.

What an amazing team dedicated to our mission:

Epilepsy Foundation Heart of Wisconsin leads the fight to stop seizures,

find a cure and overcome the challenges created by epilepsy.

Contact

Epilepsy

Foundation

Heart of

Wisconsin for:

Services

Advocacy

Education

Resources

Jeanne Lee Program Director

Pattie Cleaton Bookkeeper

Janesville Office 205 N Main St. Ste. 106 Janesville, WI 53545 608.755.1821

See information on this page for

phone and addresses.

Jane Meyer Program Director

John Mirasola Employment Services

Dennis Perkins Development Director

Madison Office 1302 Mendota St. Ste. 100 Madison, WI 53714 608.442.5555

Ann Hubbard Services Director

Stevens Point Office 41 Park Ridge Dr. Ste. C Stevens Point, WI 54481 715.341.5811

Not Pictured: Melissa Clark, Business Manager Richard Glinski, Office Assistant

Anne Faulks, RN Education Outreach

3

Detach and mail in enclosed envelope

I would like to support the Epilepsy Foundation Heart of Wisconsin

Name:____________________________ Address _____________________________________________________

Phone number: ______________________ E-mail: ____________________________________________________

Enclosed is a check for $_______________ Charge my credit card $_______________________

CC# _________________________________________________________ Exp. Date: _____________________

Security Code: _____________ Zip Code: __________________

Dear Friends,

This December the Epilepsy Foundation is celebrating 35 years in Wisconsin as an organization dedicated to people

and families coping with epilepsy and the challenges that recurring seizures bring. The history of the Epilepsy Founda-

tion in Wisconsin can be traced to a number of early support groups that emerged in a number of locations in the

1970s.

These support groups formed out of necessity. Epilepsy is a condition which falls through the cracks of existing social

service programs for a variety of reasons. In between seizures a person is healthy and able. For this reason and

others, there have never been any mandated services for people with epilepsy and our early support networks in the

mid-seventies aimed to fill this void.

By 1980 they had raised sufficient awareness and developed sufficient funding sources to pursue charitable status

with the IRS and officially incorporate. When I look back over these 35 years I am struck by the fact that we’ve all

been a part of the golden era of epilepsy services in Wisconsin.

Three staff members, Ann Hubbard, Jane Meyer and myself, have been with the Foundation for over 20 years. We’ve

seen kids from camp grow into adults with careers, we’ve seen therapeutic advances provide seizure control where

none had been possible, and we’ve experienced the passing of friends, board members and long-term clients to

epilepsy, which is far from benign.

Here’s a snapshot of epilepsy services from 2014 so you know what’s happening in Wisconsin. We served over 3,000

individuals with epilepsy and family members with direct service. 450 people attended patient education

presentations including the annual conference in Marshfield as well as ten Epilepsy Update dinner programs offered

in communities throughout the state.

We brought epilepsy awareness to 5,000 people in 2014 through seizure recognition and first aid trainings including

190 school nurses, 286 people at employment settings and 1,000 school-aged children.

You can help us celebrate 35 years of epilepsy services in Wisconsin with a gift of $35. We’re looking for 700 people

to make a gift of $35 to help us sustain epilepsy services at this high level for years to come. You’ve been an

important part of our mission over the years and we couldn’t have success without you.

Arthur Taggart, Executive Director

………………………………………………………………………………………………………………………………………………………………………………………

4

WORKING WITH YOUR CHILD’S DAYCARE

PROVIDERS AND SCHOOLS

In addition to parents, day care and

school staff need to be prepared to

administer any one of these types of

medication according to the physi-

cian’s instructions. Training for the

various types of rescue medications

is online at:

WISHeS www.wishesproject.org/

Wisconsin Department of Health

Services TRAIN Program wi.train.org

Wisconsin Dept. of Public Instruction

www.sspw.dpi.wi.gov/sspw_sntraining

Because school nurses are so crucial

to ensuring a positive, safe school

experience, the Epilepsy Foundation

has designed an online program for

school nurse training in all aspects of

epilepsy: Managing Students with

Seizures which is available at:

‘Rescue’ medications are used

outside of a hospital setting because

they reach the brain quickly and

may prevent a prolonged seizure

episode requiring emergency room

treatment or hospitalization. Your

medical provider will determine the

situations when a rescue medication

should be used, as well as the drug,

dose, method of administration and

care to be provided after it has been

given.

Benzodiazepines such as diazepam

(Valium®), lorazepam (Ativan®) and

midazolam (Versed®) are currently

being used as rescue medications.

Many parents of children with

epilepsy are familiar with the use of

the rectal form of diazepam known

as Diastat® to stop their child’s

seizures. However, the drawbacks

of Diastat® include: difficulty admin-

istering due to seizure movements,

privacy concerns, the need for

trained personnel in school or work

settings and the possibility of

excessive sedation. While Diastat®

is currently the only seizure rescue

medication approved by the Food

and Drug Administration (FDA),

other types are now being

prescribed in certain situations:

A person who is alert and able

to swallow may use one of the

pill forms of lorazepam or

diazepam during a seizure

cluster.

A person having a prolonged

seizure may be given lorazepam

or midazolam placed under the

tongue (sublingual), inside the

cheek (buccal), or sprayed into

a nostril (nasal).

An injection of midazolam into

the muscle is being studied.

RESCUE MEDICATIONS —

WHAT YOU NEED TO KNOW

The Epilepsy Foundation wants to offer you employment assistance! If you

are on a job hunt or if you’re trying to iron out issues at your current gig, we

can help you. We can show you how to redesign your resume and cover

letters, coach you on interviewing skills and even guide you through the

paces with a mock interview. Learn different styles and methods for a job

search and even buff up your LinkedIn profile. If you are experiencing

conflict in your current workplace we can help you find ways to resolve it.

We specialize in epilepsy but can help anyone who wants to work. Call us to

develop your employment plan.

EMPLOYMENT SERVICES

5

Victoria Carter, daughter of Linda

and Wallace Carter of Madison was

the recipient of the “Seize Your

Education” Scholarship.

Victoria’s brother has a number of

medical conditions that brought

Victoria to our Siblings program

when she was just 8 years old.

Three years later she developed

epilepsy herself. She has stayed

with the program, now participating

as a mentor at the annual event.

Victoria was active in her high

school as a “Peer Partner” and “LINK

Crew”, mentoring at risk students

and those with special needs. She

has been an advocate at the

national level working with Epilepsy

Foundation’s “Project Access”.

Now a student at Madison Area

Technical College, she hopes to

pursue a career in special education.

Victoria Carter (right) volunteers at our annual Sibs Day in Madison

2015 SCHOLARSHIP

RECIPIENT

For more information on Epilepsy

Foundation Heart of Wisconsin’s

Seize Your Education Scholarship

or to apply, contact Dennis in

the Madison office

Advances in epilepsy treatment are sky-rocketing. Besides surgery, diet, nerve or brain stimulation; medications are still the mainstay of epilepsy treatment. Scientists continue to study ways that medicines could stop or control seizures.

During discussions on how anti-convulsants work you hear terms such as sodium, potassium and calcium channels or GABA and glutamate. These, and others, are targets in the brain that either:

affect the way substances move in and out of cells.

or how they excite or inhibit neurotransmission - the way information is sent from one cell to another.

Medication formulations are developed to modify these targets, balancing the brain function to prevent or stop seizures.

When clinicians prescribe epilepsy medication they consider which target in the brain will be affected by the drug as well as a host of other things such as side effects, seizure type, interactions with other medications, how it metabolizes, cost and much more.

To learn more about what makes an anticonvulsant work there are many articles and webcasts at www.epilepsy.com. Join us for our annual conference “Advances in Epilepsy Treatment” or attend one of our “Epilepsy Update” dinner meetings.

HOW DO ANTI-

CONVULSANTS

WORK?

SPECIAL NEEDS

SAVING: ABLE ACT

The ABLE (Achieve a Better Life

Experience) Act will allow certain

individuals with disabilities and their

families the opportunity to contribute to

a tax-exempt savings account that can

be used for maintaining health,

independence and quality of life.

To qualify, individuals must meet the

functional limitations guidelines set up

for Social Security Disability and

Supplemental Security Income (SSI).

Although an ABLE account may be set up

for a beneficiary at any age, there must

be documentation that the onset of

disability was before age twenty six.

Prior to this there were strict limits to the

amount of money an individual with

government benefits could maintain in

assets ($2000) and that amount has not

changed in 30 years. Proponents of the

change recognized the extra expenses

associated with living with a disability.

ABLE account funds can help support

education, housing, employment

training, dental health care, therapy

expenses and other services.

The National Disability Institute is one

source of current information about the

ABLE Act:. See “The 10 Things I Need to

Know About ABLE Accounts” at

www.realeconomicimpact.com.

Or contact your special needs financial

advisor to review options for trusts.

6

Advances in Epilepsy Treatment: On the Frontlines

Kristin Henry Pharm.D and Monica Kohn, M.D. Marshfield Clinic, present the issues and answers

regarding cannibidiol for the treatment of epilepsy; one of six sessions during our 2015

conference.

Advances in Epilepsy Treatment Conference

Friday, April 15, 2016

THINGS TO DO IN 2016

Take a Stroll for Epilepsy!

Each event is filled with activities,

food, raffles, music—fun for the

whole family. And thanks to very

generous and enthusiastic

individuals and families, we raise

the money necessary to provide

services. Please join us in 2016

Janesville: May 21

Neenah : August 20

Wausau: August 27

Walk for a Cure—raise

money for epilepsy research in

Lancaster, WI APRIL 2016

Siblings of children with special needs

gather for a special day of their own,

It culminates with a program and pizza

for their families. Contact us to be sure

your child is on the “Sibs” mailing list.

Next program Spring, 2016

Rama Maganti , MD (right) of

University Hospital in Madison is

one of several epilepsy specialists

who make presentations at

“Epilepsy Update” dinners

throughout the state. Watch for

future events and join us for an

excellent dinner, in depth

Information and an opportunity to

ask specialists your questions.

7

Camp Phoenix, a week-long camp

for children with epilepsy at the WI

Lions Camp in Rosholt. Children

meet others with epilepsy and

experience all the fun of summer

camp with plenty of medical and

well trained staff.

Contact us in April for

your registration

information.

2016 session is

August 7—11.

Support Group meetings, educational

events and parties are

held in many cities

throughout our 46 county

service area.

Madison, Appleton,

Wausau, Stevens Point,

La Crosse, Green Bay,

Wisconsin Rapids,

Antigo, Racine ,

and Wausaukee are held regularly.

Watch our facebook page

for dates, details, special

events and more! Call to

be put on reminder

mailing list.

Thursday, February 11, 2016 Enjoy an Evening of Chocolate Decadence

at the beautiful Stevens Point County

Club. Sample decadent desserts and

savory hors d’oeuvres . Exquisite raffle

prizes and fabulous sports silent auction.

Hike around Lions

Lake—one of the many

activities during the

annual Retreat for

Adults with Epilepsy.

Adult Retreat 2016

September 16—18 .

Mark your

calendars!

In Madison the annual Bowl-A-Thon is held in the spring. Participants from

across the state will gather for fun and

fundraising!

National Walk for Epilepsy Washington DC on April 16

8

CHANGE SERVICE REQUESTED

Non-Profit Org.

U.S. Postage

PAID

Stevens Point, WI

PERMIT #64

41 Park Ridge Dr. Ste. C

Stevens Point, WI 54481

www.epilepsy.com is the source for

information about epilepsy, research,

innovations and programs. Search

our data base for articles, focus

groups and so much more. The

Epilepsy Foundation challenges you

to #DareTo Go the Distance.

UPDATE: ANOTHER CAPITOL HEARING ON CBD OIL

On November 24, 2015 Senator Van

Wanggaard (R-Racine) held a hearing

on LRB-1911, a bill that would de-

criminalize possession of Cannibidiol

(CBD oil )for epilepsy patients.

18 months ago the legislature

approved its use for seizure disor-

ders but included no provisions for

how CBD might be obtained. This

new bill does not solve the problem

of obtaining CBD but would protect

those who have been able to obtain

CBD on their own from prosecution

for possessing it. Proper trials of

CBD have been stalled because

The Drug Enforcement Agency

considers cannabis a Schedule 1

drug which means it has no

accepted medical use and a high

potential for abuse. The Epilepsy

Foundation is working through the

FDA to change this scheduling so

that necessary research on CBD

can go forward unimpeded.

EFHOW

BOARD OF DIRECTORS

Jeremiah Hassell Chair

Stephanie Willing Vice Chair

Ty Weimer, Treasurer

Tom McCarrier, Secretary

Jennifer Benishek

Linda Best, RN

James Ferk

Doris Olander Graff

Walter Kao, MD

Barbara Mullen

Lori Sorge

Jennifer Stuckert