Spring 2010 EPILEPSY FOUNDATION OF MICHIGAN • (248) 351-7979 • (800) 377-6226 • www.epilepsymichigan.org

HEADLINESIN THIS ISSUE

President’s Message 2

Epilepsy in Our Own Words 3

Upcoming Programs &

Events 4-5

Epilepsy Through Art 6

Research News 6

“Bursting with Joy” 7

Calendar of Events 7

From The PresidentBOARD OF DIRECTORSGregory L. Barkley, MDNick BroggiKatie CatherTammy ClingerJason CloseMichael L. Collins, CPADennis K. EganElizabeth Garofalo, MDSteven J. Guarini, CPAJim HindsTodd HohauserShelley IrwinDavid P. KapelanskiSharon LeenhoutsJames J. Madaus, CPAThomas PartchCindy PersonRichard A. PolkIlise Rosen HaldemanMel SternfeldDelores Gardner StokesMichael F. S. SytsmaBrett Youker

Arlene S. Gorelick, MPHPresident PROFESSIONAL ADVISORY COMMITTEEAmer Aboukasm, MDGlen Ackerman, MDJudy Ahn-Ewing, R.EEG/EP T., CNIMGregory Barkley, MDStephanie Bayma, RNHarry Chugani, MDJules Constantinou, MDDenise CooperDiane K. Donley, MDDaniel Fain, MDTessy Jenkins, MDSucheta Joshi, MDJay Kaner, DOJeffrey A. Loeb, MD, PhDDaniela Minecan, MDMichael Nigro, DORobert Rothermel, PhDOren Sagher, MDBrien Smith, MDMarianna Spanaki-Varelas, MDAdriana Tanner, MDTimothy Thoits, MDCraig Watson, MD, PhD

STAFFArlene S. Gorelick, MPH PresidentTyler MacEachran, MPA Vice PresidentDuc Abrahamson Special Events ManagerPamela Bird Office ManagerSheryl Darroch, MSW Health EducatorPatricia Dennis AccountantRuss Derry, MPH Director of EducationCynthia L. Handford, RN Education SpecialistBrianna Romines, MPA Development Director

WE’RE BUILDING

For people with epilepsy, access to the medication that works for them

is crucial. We have been working to prevent the switching of epilepsy

medication, whether that is from brand to generic or generic to a different

generic manufacturer, without consent. While not a problem for everyone

with epilepsy, it is a problem for some. Many have called us and shared

stories of being switched at the pharmacy and the problems this has

caused. Others have called about the problems they have had with

insurance companies about keeping on or getting back on the epilepsy

medication that works for them.

We are supporting House Bill 4408, introduced by Representatives Espinoza, Gregory, Lis, and

Terry Brown, and Senate Bill 318, introduced by Senator Gleason. The legislation would prevent

a pharmacist from changing an anti-epileptic drug to a different formulation without prior

notification by the prescribing physician and the patient or the patient’s legal representative.

Unfortunately, neither bill has had a hearing yet.

However, we have seen some progress on the issue. The Medical Letter on Drugs and

Therapeutics reviewed the evidence that switching between brand and different generic

medications may cause epileptic events requiring medical care. The letter went on to

recommend “using one formulation (brand name or generic) consistently or, if consistency is

not possible with generics, prescribing the brand name routinely”.

As a result of this and other studies, Wellmark Blue Cross Blue Shield of Iowa recently changed

policy for people with epilepsy taking Topamax, Keppra, and Lamictal. Members do not

have to pay the difference between brand name and the generic for the above listed

medications. In addition, Wellmark Blue Cross Blue Shield of Iowa also maintains the same

co-pay for older anti-epileptic drugs.

We applaud Wellmark Blue Cross Blue Shield of Iowa for this change in policy. We’re

continuing to work on this issue, both at the legislative level and with health insurance

companies in Michigan. But we cannot do it alone. I invite you to join us on May 4th at our

12th Annual Legislative Recognition Breakfast at the House Office Building in Lansing. Together,

we can make a difference.

12th Annual Legislative Recognition Breakfast

May 4, 2010 • Lansing, MIMAKE A DIFFERENCE! WE NEED YOU!

Join the Foundation as we work to shape public policy relating to epilepsy.

Please visit our website www.epilepsymichigan.org or contact Pamela Bird,

(800) 377-6226, option 1, ext. 204 to learn more about these exciting events.

Annual Legislative

Recognition Breakfast

Michigan Kids SPEAK UP! Event

3www.epilepsymichigan.org

EPILEPSY FOUNDATION OF MICHIGAN JOINS SMARTER

The Epilepsy Foundation of

Michigan has joined the

Skilled Motorcycle Association

–Responsible, Trained and

Educated Riders (SMARTER),

whose mission is to be the

voice of all responsible, trained,

and educated motorcyclists.

SMARTER believes in “ride

smart” by properly dressing for

the ride.

The Foundation will continue to

work with SMARTER to oppose

efforts to repeal the mandatory

motorcycle helmet law.

For information about

SMARTER, and learn the facts

about motorcycle safety and

helmets, visit their website at

www.smarter-usa.org.

In late September of 2009, Susan Richardson approached the Epilepsy

Foundation of Michigan with an interest in doing a presentation to a small

class at Ferris State University. By November 11th, she had partnered with the

Foundation to launch a campus wide awareness and third party fundraising

effort.

During the process,

Susan coordinated

the talents and efforts

of Foundation staff,

FSU departments,

faculty and students,

and many others.

The final program,

Epilepsy in Our Own

Words & Seizure Smart,

was attended by 177

people. During the

performance, faculty

member Mindy Britton, Epilepsy Foundation of Michigan staff person, Cindy Handford, RN, students Corey Potter, Tina Westra (Calvin College) and Susan

Richardson shared touching stories about how epilepsy had impacted their

lives. Attendees then learned how to properly assist someone having a

seizure.

Prior to, and during the event, volunteers also sold “Links of Love” to benefit

the Epilepsy Foundation of Michigan. The paper chain that resulted was hung

prominently in the campus library.

Says Susan, “What started as a small initiative to inform my class of thirty

students about epilepsy has led to a campus-wide event – this truly shows

that with dedication and confidence you can do the same! Never hesitate

to share your biggest battles with others – you never know what type of

emotional healing can occur along the way. I once felt that I was the only

person on campus with epilepsy, and come to find out, I am not alone.”

Susan is now the President of the Epilepsy Foundation of Michigan’s Young

Adult Leadership Council. In that role, she will be assisting others to launch

similar collegiate awareness and fundraising efforts on college campuses all

across Michigan in 2010.

If you would like more information about Epilepsy in Our Own Words, the

Young Adult Leadership Council, or Seizure Smart, please visit our website

http://www.epilepsymichigan.org or contact Tyler MacEachran at

(800) 377-6226 option 1, ext. 211.

For information about doing other third party fundraising, please visit our

website: www.epilepsymichigan.org or contact Brianna Romines at

(800) 377-6226 option 1, ext. 217.

Susan Richardson, second from left, with Epilepsy Foundation of Michigan staff and volunteer, at Ferris State University

Epilepsy in Our Own Words & Seizure Smart event.

Epilepsy in Our Own Words: An Awareness and Fundraising Initiative

20300 Civic Center Dr., Suite 250 Southfield, MI 48076

1345 Monroe Ave. NW Suite 202 Grand Rapids, MI 49505

(800) 377-6226 www.epilepsymichigan.org

November 12–13, 2010Rock Financial Showplace, Novi, MI 48374

Please visit our website,

www.epilepsymichigan.org or contact

Russ Derry at (248) 351-7979, option 1, ext.

302 to learn more about this educational,

networking opportunity.

R E G I O N A L C O N F E R E N C EAn Epilepsy Today Feature Program

APPLY TODAY!Dakota Pequeno Memorial Scholarship

deadline is March 24, 2010

Please visit our website to check if you are eligible

and to download the scholarship application.

EPILEPSY FOUNDATION OF MICHIGAN:

UPCOMING PROGRAMS & EVENTS

SAVE THE DATE5TH ANNUAL

PAUL NEU MEMORIAL GOLF CLASSIC

JUNE 28, 2010Railside Golf Club

2500 76th Street, Byron Center, MI 49315

Want to Register, Sponsor, or have questions?

Please contact Johanne Neu at (616) 878 – 3889

or visit us at www.epilepsymichigan.org

Paul Neu was a man of honor and wit, a lover of

music and golf. He bravely faced the challenges

of epilepsy for 22 years without letting it stop him

from experiencing the things and people he loved

most. In June 2005, at the age of 38, Paul lost

his fight with epilepsy, but his family and friends

pledge to continue his support of the Epilepsy

Foundation of Michigan and its goals.David & Johanne Neu with Foundation President, Arlene Gorelick

SPRING 20104 Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN

5www.epilepsymichigan.org

Over 1,400 people joined us last year in Midland,

Kalamazoo, Metro Detroit, and Grand Rapids and

helped to form over 78 teams! Because of your

support, the Summer Stroll for Epilepsy™ helped to raise

over $120,000! Join us for the 2010 Summer Stroll for

Epilepsy™ so that we can continue to provide many

of our programs and services to people in Michigan

who are touched by epilepsy.

JOIN THE FIGHT THIS YEAR!

May 22 - Dow Diamond, Midland

June 5 - Celery Flats, Kalamazoo County

June 12 - Detroit Zoo, Metro Detroit

June 19 - Riverwalk, Grand Rapids

Anywhere, Anytime - Virtual Stroll

www.epilepsymichigan.org/stroll

(800) 377-6226 option 1, ext. 236

The only specialized camp in Michigan for youth with epilepsy June 27, 2010

through July 1, 2010

Sherman Lake YMCA Outdoor Center

Augusta, MI (NE of Kalamazoo)

For more information, visit our website,

www.epilepsymichigan.org or contact Sheryl Darroch at (800) 377-6226, opt. 1, ext. 231

2010

COMMIT • INSPIRE • EMPOWER

Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 20106

Epilepsy interpreted through Art

FOR ALISONCreated by local artist: A. Forand

“I envisioned this rainfall of neurons, and dendrites, repeatedly

dumping water into the puddle. This image made me reflect

about how beautiful and powerful the human body could be.

Until I made this image, I wasn’t fully aware of how dispiriting

epilepsy can be. I hope this image can empathize visually how

I interpreted what it’s like to suffer from epilepsy. A conceptual

pattern shown through my work, is taking an object or idea that

is ugly, and to morph beauty into it. By doing this, the change in

perspective suddenly became expressive, and stimulated my

need to nurture those touched by epilepsy. I hope you see the

beauty that others have achieved!”

A. Forand

The "Winning Kids" and "Terrific Teens"

programs recognize the accomplishments

of children and teens with epilepsy who

have overcome tremendous challenges

in their lives. These programs help youth

demonstrate their courage and winning

spirit, and increase their self-esteem,

as they tell their stories. All participants

are honored and have the opportunity

to represent the Foundation at events

throughout the year. To nominate Winning

Kids or Terrific Teens YOU know, please visit

our website www.epilepsymichigan.org

or contact Tyler MacEachran at

(800) 377-6226 option 1, ext. 211.

Research News National Institute of Neurological Disorders and Stroke (NINDS) has

adopted a new research initiative entitled, “Accelerating Research

in the Epilepsies.”

The concept for the new research initiative largely grew out of

discussions last year among epilepsy groups including the American

Epilepsy Society, CURE, Epilepsy Foundation, the Epilepsy Therapy

Project and others and Senator Edward M. Kennedy and his staff for

the possible creation of epilepsy legislation. The new initiative takes

many of the concepts from the discussions with Sen. Kennedy and his

staff and immediately puts them into practice through a variety of

new research mechanisms at the NINDS.

The initiative will include the following:

NINDS CENTERS WITHOUT WALLS PROGRAM: based

on a successful model used in other NIH Institutes, these new Centers

will promote a virtual opportunity for collaborative research to solve

specific challenges identified as priorities.

TRANSLATIONAL RESEARCH PROGRAM FOR THE EPILEPSIES: this program will focus grant opportunities in critical

areas such as anti-epileptogenesis and treatment resistant epilepsy.

Many of the grant topics will be based out of the benchmarks

established in the 2000 and 2007 NINDS conferences on curing

epilepsy.

EUREKA GRANTS: The Epilepsies Exceptional, Unconventional

Research Enabling Knowledge Acceleration program, or EUREKA,

will be a set of special grants to support highly innovative and novel

approaches in epilepsy research.

The Epilepsy Foundation of Michigan continues to be very

involved in public policy.

Please visit our web site at www.epilepsymichigan.org for

our latest advocacy involvement.

7www.epilepsymichigan.org

EPILEPSY FOUNDATION OF MICHIGAN:

CALENDAR OF EVENTSMARCH March 24 Dakota Pequeno Memorial Scholarship deadline March 30 Epilepsy in Our Own Words Eastern Michigan University

APRIL April 21 Southeast MI Meet & Greet Open House April 29 West MI Meet & Greet Open House

MAY May 4 Legislative Breakfast & Michigan Kids Speak Up! May 22 Summer Stroll for Epilepsy™ (Midland)

JUNE June 5 Summer Stroll for Epilepsy™ (Kalamazoo County) June 12 Summer Stroll for Epilepsy™ (Metro Detroit) June 19 Summer Stroll for Epilepsy™ (Grand Rapids) June 27-July 1 Camp Discovery June 28 5th Annual Paul Neu Memorial Golf Classic

JULY July 24 Epilepsy Entertainment Gathering Whitecaps Game, (Star Wars Night), West MI

AUGUST August 19 West MI Meet & Greet Open House August 25 Southeast MI Meet & Greet Open House

SEPTEMBER Sept. 24-25 Adult Camp Retreat Sept. 30 Southeast MI Flame of Hope

OCTOBER October 7 West MI Flame of Hope October 2 Epilepsy Entertainment Gathering Pankiewicz Cider Mill, Southeast MI

NOVEMBER Nov. 12-13 Wellness & Epilepsy Regional Conference Nov. 20 Epilepsy Entertainment Gathering – West MI

Bursting with Joy Recently released by Michigan author, Joan Broggi, “Bursting with Joy” recounts the parental struggles and emotions experienced in raising a child with epilepsy and special needs, as well as the life lessons her son, Alex, taught her along the way. Even though Alex will never learn to read, ride a bike, drive a car, or go to college, his profound innocence and unique ability to do the right thing teaches those around him every day. Adapting some of the chapter headings from Elisabeth Kübler-Ross's groundbreaking book, On Death and Dying, and adding her own chapter entitled Joy, Joan Broggi recounts how her family and community embrace Alex's extraordinary gifts. Purchase this book and a portion of the proceeds will benefit the Epilepsy Foundation of Michigan!

Visit www.joanbroggibooks.com and purchase your copy today!

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about the Foundation, and connect with people all over the world who are affected by epilepsy.

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receiving your newsletter and other announcements easily.

20300 Civic Center Dr., Suite 250 Southfield, MI 48076

Planned GIVING ….how future generations can benefit from your generosity.

Consider leaving a bequest or beneficiary designation in your will for the Epilepsy Foundation of Michigan.

Leaving a legacy gift will help assure that the Foundation will always be here to help individuals touched by

epilepsy. Thank you!

For more information, please contact your Financial Planner or call us at (800) 377-6226, option 1, ext. 217.