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HEADLINES

IN THIS ISSUE

From the President ................ 2

Camp Discovery ....... 3

2007 Summer Stroll Update .................... 3

Research in Progress: Women with Epilepsy .................. 4

Family Weekend Retreats ................. 5

2007 Winning Kids ...................6-7

Calendar of Events ................. 8

20300 Civic Center Dr., Suite 250 Southfield, MI 48076 (248) 351-7979 • Fax: (248) 351-2101 • www.epilepsymichigan.org

Spring 2007

Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 20072

BOARD OF DIRECTORSGregory L. Barkley, MDChristine Bernhard Viegas, Esq.Nick BroggiKatie Cather Michael L. Collins, CPADennis K. EganJohn R. ElkinsElizabeth A. Garofalo, MDSteven J. Guarini, CPATodd HohauserShelley IrwinGerald R. Johnson, Jr.David P. KapelanskiSharon LeenhoutsJames J. Madaus, CPATerri A. MurrayRichard A. PolkIlise RosenColette RussellMel SternfeldDelores Gardner StokesAndrew N. Vanchick Arlene S. Gorelick, MPHPresident

PROFESSIONAL ADVISORY COMMITTEEAmer Aboukasm, MDGlenn N. Ackerman, MDJudy Ahn-Ewing, R.EEG/EP T., CNIMImran Ali, MDYasser Awaad, MDGregory L. Barkley, MDStephanie Bayma, RNHarry Chugani, MDJules Constantinou, MDDenise CooperDiane K. Donley, MDJonathan C. Edwards, MDDaniel Fain, MDTessy Jenkins, MDSucheta Joshi, MDJay Kaner, DOJeffrey A. Loeb, MD, PhDDaniela Minecan, MDMichael Nigro, DODebra M. O’Donnell, MDRobert Rothermel, PhDOren Sagher, MDBrien Smith, MDMarianna Spanaki-Varelas, MDThomas Swanson, MDAdriana Tanner, MDTimothy K. Thoits, MDCraig Watson, MD, PhD

STAFFArlene S. Gorelick, MPH PresidentTyler MacEachran, MPA Vice PresidentDuc Abrahamson Special Events CoordinatorPamela Bird Administrative CoordinatorSheryl Darroch, MSW Health EducatorPat Dennis, AccountantRuss Derry, MPH Director of EducationCynthia L. Handford, RN Education Specialist Andrea Schotthoefer Marketing ManagerBrianna Romines, MPA Manager of Special EventsMia Cooke, MSW, Health Edu.

Established in 1948, the Epilepsy Foundation of Michigan is the only statewide non-profit organization focusing on epilepsy. The Epilepsy Foundation provides Public Education & Awareness Programs, such as Seizure First Aid Training and Living Well Workshops, which are designed to enrich the quality of life for all

persons affected by epilepsy; Advocacy Programs; and Education & Consultation Services including toll-free phone services, video library and literature.

From The PresidentHave you ever gone to the pharmacy and or received your prescription by mail and noticed that the pills you received looked different than last time? You were probably suspicious that a mistake had been made, so you contacted the pharmacist. When you asked the pharmacist about it, he or she might have replied there was no mistake, that you got the right prescription. It was just as good as the one you had last time. They may even have told you that they saved you money on this prescription.

But maybe, like many people with epilepsy, you were still concerned. Would this medication really give me the same seizure control as what I have been taking? You may have even been switched once before, and had the experience of having a breakthrough seizure.

We get calls about this from people who have had adverse effects. I remember a mother who called to tell us that her medication had been switched at the pharmacy, and then she had a seizure. This created a lot of problems for her. She could not drive and pick up her children from school.

It has become common practice for pharmacies to substitute generic for brand name medication if available. They also buy different generics from time to time depending on price and availability. Sometimes, they may even substitute another medication in the class. In general, generic medications are as effective as the brand name. With epilepsy medications, the picture is a little more complex.

New studies are showing that this common practice is causing a rise in breakthrough seizures and adverse effects. To be approved, a generic medication must be within 80 to 125 percent of the branded product. This difference is a cause of concern. A person may do quite well on a generic from one manufacturer, but then have problems if switched to a medication made by another.

The Epilepsy Foundation is very concerned about the impact of switching from one form of a drug to another without the consent of the patient and the physician. To that end, we will be working on legislation that would protect people with epilepsy from switching without consent.

Do you have a story to tell about having your medication switched which caused you to have a seizure? We would like to share your story with policy makers at our upcoming 9th Annual Legislative Recognition Breakfast, scheduled for May 8 in Lansing. I invite you to come to the event and meet your Michigan Representative and Senators. The event is free, so be sure to call or email us to register.

We are also interested in your story so we can relay them as a group to the legislators. Please call or send us your story about how a change in your medication by the pharmacy impacted your life. We are committed to enlightening legislators about the problems you are facing, so please help us share your story.

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EPILEPSY FOUNDATION OF MICHIGAN PRESENTS

August 19, 2007 – August 23, 2007 (Grades 3-10)

The Epilepsy Foundation of Michigan’s Camp Discovery provides youth with epilepsy a safe, structured and encouraging home away

from home for 5 days and 4 nights.

CANOEING & KAYAKING • HORSES ARTS & CRAFTS • SWIMMING

AND MUCH, MUCH MORE!

Camp Discovery will be held at Sherman Lake YMCA Outdoor Center in Augusta, Michigan. Staff includes

Foundation staff, pediatric neurologists, and Registered Nurses. Financial assistance is available.

For a camper application, or to sponsor a camper, please call 1-800-377-6226, ext. 1-231 or Email:

sdarroch@epilepsymichigan.org. Space is limited, and demand is ever-growing, so call today!

For more information on Epilepsy Foundation programs, visit www.epilepsymichigan.org.

The Epilepsy Foundation of Michigan cordially invites you to attend our

SPRING OPEN HOUSEWEDNESDAY, MARCH 28, 2007

4 PM – 7 PMSouthfield Office

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

Please join us for this special occasion where you, your family and your friends will have an

opportunity to meet and greet with Foundation staff and take a tour of our office. Pictures

of our programs and events will be on display for your enjoyment and an assortment of

refreshments and beverages will be provided.

Please RSVP by March 23, 248-351-7979, ext. 1-236 or via email

at events@epilepsymichigan.org

Come out to the location of your choice and stroll with us as we spread epilepsy awareness through this great fundraising event! Join us for music, food, prizes, activities, and much more.

In past years we have set a suggested minimum of $40. The Epilepsy Foundation of Michigan has now chosen to institute a $20 registration fee. We need your help in raising this vital funding

that provides necessary programs and services to the entire state. Come join us and our dedicated participants as we join efforts to strengthen our mission: not another moment lost to seizures.

JUNE 2, 2007 CELERY FLATS, PORTAGE, KALAMAZOO COUNTY

JUNE 9, 2007 DETROIT ZOO, ROYAL OAK

JUNE 16, 2007 6TH STREET

BRIDGE PARK RIVERWALK,GRAND RAPIDS

JUNE 30, 2007 BAYFRONT PARK,

PETOSKEY

Make sure you register in advance by logging on to our website, www.epilepsymichigan.org or by calling our hotline at 800-377-6226 ext. 1-217. It is quick and easy to register and fundraise using our secure, online fundraising service!

Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 200744 Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 2007

RESEARCH IN PROGRESS:

Recent Research Findings for Women with EpilepsyWomen with epilepsy face several unique challenges in managing their condition. Many women, however, are not aware of these challenges and how to deal with them. The consequences of this can be serious, including congenital disabilities, increased seizures, osteoporosis, infertility, sexual dysfunction, polycystic ovary syndrome, and depression.

Fortunately, a great deal of research is being done to improve our understanding of health issues faced by women with epilepsy. The following are brief summaries of just some of the recent studies in this area:

Veliskova (1) highlighted the complex relationship between estrogen and seizures and called for further study in this area. Estrogen has long been known to have pro-convulsant properties, but has recently been shown to also have anti-convulsant properties in certain circumstances. Whether estrogen provokes or suppresses seizure activity depends on a number of factors including levels of other hormones, the type of estrogen involved, the region of the brain involved, and seizure type. Estrogen has also been shown in animal studies to have neuroprotective effects on seizure-induced damage to the hippocampus.

Harden et al. (2) conducted a randomized, double-blind, placebo-controlled trial of the effect of hormone replacement therapy (HRT) on seizure frequency in postmenopausal women with epilepsy. The study found that HRT was indeed associated with a dose-related increase in seizure activity. HRT may also decrease lamotrigine levels.

Lofgren et al. (3) studied 148 women with epilepsy to determine the effects of different epilepsy types and antiepileptic drugs on reproductive endocrine function. They found that idiopathic generalized epilepsy and valproate were associated with an increased risk of reproductive endocrine disorders, including hyperandrogenism, polycystic ovaries, and polycystic ovary syndrome.

Turner et al. (4) studied 70 pregnant women, half with epilepsy and half without, and found that 29% of the patients with epilepsy developed postpartum depression as compared to 11% percent of controls. This represents a significant increase in risk.

Vazquez et al. (5) conducted an online survey of women with epilepsy. Respondents were asked to rate their concern about how their antiepileptic medication affected pregnancy, weight, bone health, menopause, birth control, and sexual function. Women were most concerned with bone health and weight gain, with over 60% reporting they were “very concerned” or “extremely concerned” about each. For women under the age of 35, pregnancy was the top concern. Despite these concerns, knowledge about these topics was limited, with only between 31 and 54% of respondents reporting that they were “knowledgeable” or “very knowledgeable” about the topics. In addition, 55% of respondents felt that their physician did not provide enough information on women’s health issues and epilepsy.

To learn more about these and other important topics, please consider attending our Women and Epilepsy Forum.

For article references, call 1-800-377-6226 ext. 1-218.

THE IRA ROLLOVERThe IRA Rollover allows taxpayers to donate up to $100,000 annually from their IRAs tax free to charitable causes. Donors don’t get a tax deduction for the gift, but the money is excluded from taxable income when computing taxes, so the effect is the same. However, this opportunity is only available through the year 2007. If this is something you are interested in or would like more information, please contact us at 800-377-6226 x 1-217.

A few things about the IRA Rollover provision and its limitations:

• Only taxpayers age 701⁄2 can take advantage of the provision.

• It only applies to gifts made in tax years 2006 and 2007.

• The maximum amount that can be rolled over tax-free each year is $100,000.

• The provision only allows for direct, cash gifts to a qualified, nonprofit institution (i.e., a 501(c)(3) charitable organization). For example, money could NOT be directed to a donor-advised fund.

WOMEN & EPILEPSY FORUM

May 11, 2007 8:00 a.m. - 4:00 p.m.

Sheraton Detroit Novi 211 Haggerty Rd. Novi, MI 48375

TOPICS:Women & Epilepsy: An Overview

Epilepsy In The Childbearing YearsDepression In Women With Epilepsy

Women’s General Health IssuesPsychogenic Nonepileptic Seizures

Epilepsy & Relationships: Panel Discussion

For more information or to attend, call 1-800-377-6226 ext. 1-302

Continuing Nursing Education: Participants may receive a maximum of 5.1 contact hours as approved by Michigan Nurses Association.

FEES: Conference cost is $25 and

includes lunch and refreshments.

Conference is FREE for Detroit Wayne County Community Mental Health staff and consumers.

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WEST MICHIGAN FAMILY WEEKEND RETREATOur first West Michigan Family Weekend Retreat was a huge success! It was held February 16-18 in Kalamazoo with 44 family members representing 13 families. The attendees spent the weekend “building stronger relationships” through psycho-educational sessions, team-building activities, group discussions, and social activities. One attendee had this to say when asked if she would recommend the retreat to another family: “Yes, It shows that you are not alone and that you are stronger than you knew.” Retreat attendees also had the chance to network with each other and build lasting friendships. Thank you to our volunteers, especially Stephanie Bayma, RN from Bronson Pediatric Neurology, who was our behind the scenes coordinator for the weekend. Thank you also to all of the families who attended. We look forward to having the same success at our Southeast Michigan Family Weekend Retreat in May.

LEGISLATIVE BREAKFAST AND “MICHIGAN KIDS SPEAK UP” DAY

SPEAK UP, BE HEARD!The Epilepsy Foundation of Michigan cordially invites adults

and youth (ages 8-16) to attend this important event.TUESDAY, MAY 8TH

Mackinac Room, Anderson House Office Building 124 North Capitol, 10-South

PO Box 30014, Lansing, MI 48909-7514Legislative Breakfast (For: Adults and youth)

8:00-9:30 AM“Michigan Kids Speak Up”

(For: Youth ages 8-16) 10:00 – 3:00 PM

Legislative Workshop, Meet with Legislators,

Speak Up, Be Heard! Luncheon, Tour of the Capitol Building & View Legislature in Action

Please RSVP by May 1st to Pam Bird at 800-377-6226 ext. 1-204 or e-mail pbird@epilepsymichigan.org.

SOUTHEAST MICHIGAN WEEKEND

Family RetreatA family retreat for children with epilepsy and their families.

May 18-20, 2007At Ramada Inn Downriver 20777 Eureka Rd. Taylor, MI 48180

On this retreat you can expect to:

Have Fun

Discover Strengths

Build Stronger Family Relationships

Develop New Skills

Face Challenges

Meet Other Families

All children who attend must be between the ages of 8 and 18.

Sorry, no daycare available at this time.

Space is limited, so call today! Call Sheryl Darroch at (800) 377-6226, ext. 1-231 for more details or for an application.

Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 200766 Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN

2007 Winning KidsThese young heroes represent all of the children throughout Michigan affected by epilepsy.

They remind us not just of the special challenges that all people with epilepsy and their families

face, but of all that can be accomplished despite the obstacles that challenge them daily.

Kevin Smith 14 years old Grand Blanc

Ashley Mokma 12 years old West Olive

Brittany Harris 10 years old Lincoln Park

Joey Hamill 14 years old

Bloomfield Hills

Christian Parrot 13 years old

Detroit

Caitlyn Gauck 9 years old

Belding

Austin Burnette 15 years old

Livonia

Lisa Fedel 13 years old Ann Arbor

Sarah Valente 14 years old

Sterling Heights

Kayleen Hudson 14 years old

Portage

Elden Palmer 8 years old

Madison Heights

Destiny Norris 16 years old River Rouge

Mary Scovel 14 years old Grand Rapids

Nicholas Westphal 13 years old Port Huron

Tiffany Lepage 14 years old

Jackson

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WHAT EPILEPSY IS TO LISABy Lisa Fedel

Kids with epilepsy are winning kids. No matter what other people (who don’t understand) say, they’re winning kids. That makes me a winning kid.

No one with epilepsy is weak. In fact, I think kids with epilepsy are stronger than kids who don’t have it. We have to deal with the regular kid issues – school, parents and friends – along with seizures, which sometimes can make a kid feel alone. For instance, some kids think epilepsy is contagious and they avoid me. I know it is not contagious. I got epilepsy from an accident; I didn’t catch it from anyone. I tell people this, but they never believe me.

My seizures are unpredictable, so I need a good night’s rest. This means I miss out on things because I need sleep. Sometimes I have to cancel my plans if I’m not feeling well because I didn’t get enough rest. It’s disappointing, but I try to be flexible.

Having epilepsy means I have to go to the doctor A LOT!!! I take a lot of different medications, and keep a really close record of side effects. This means I have to pay attention to my health. If I have butterflies in my stomach, it could be my epilepsy acting up, or maybe just nerves. It’s important to know the difference. Butterflies are OK, seizures are NOT.

Epilepsy makes me miss a lot of school. It’s really hard trying to catch up on my work when I miss a lot of classes. I try to get my assignments done early in case I get sick and can’t work on them, but that leaves me feeling rushed. Sometimes I think it would be a lot easier without epilepsy, but then I realize that if I didn’t have it, I wouldn’t do many of the things I push myself to do.

My Winning KidBy Jean Eridon

Of course, every parent thinks their child is a winner, and this is as it should be. However, Lisa has become a winner not only in her parents’ eyes, but also to those in her community.

At the age of five, Lisa was involved in a fatal accident which killed her older sister. She sustained a traumatic brain injury and was in a coma. Her prognosis was grim, but she beat the odds and survived. Not only did she survive, but she recovered to an extent which was wholly unexpected. As with any traumatic brain injury, Lisa endured intense therapy to regain full function. Of course, therapy included grief counseling to deal with the loss of her beloved older sister. Her world had changed in so many drastic ways and we thought the worst was behind us until the seizures tried to take over her life.

Lisa’s epilepsy began with the accident, but she was not diagnosed with temporal lobe epilepsy until five years later, after she went into status epilepticus. During these years she endured feelings of panic, dread and confusion common to temporal lobe epilepsy on a regular basis. Of course, outsiders had their ideas why Lisa would panic; often saying it was all in her head - after all, hadn’t she survived a terrible accident? However, Lisa never let the seizures curb her enthusiasm. She has tried her hand at tennis, gymnastics, swimming, basketball, theatre, dance, music and horseback riding.

What makes Lisa a winning kid in our eyes is that despite all that has happened, she reaches out to others by doing volunteer work both in her church as well as in the community. Last year, she led Vacation Bible School with her youth group, and she has been active in the local YMCA Youth Volunteer Corps for the past two years. This spring, she hopes to become a volunteer coach with Girls on the Run, which empowers girls in grades 3-5 via running programs. An alumni herself, she is excited about the opportunity to encourage younger girls to reach their goals and maintain self-esteem. She also took the time to meet with another girl with epilepsy who was facing hospitalization, offering her support. In 2006, she earned the President’s Volunteer Service Award.

Of all she has endured, epilepsy has been the most debilitating. She continues to look for medication which will control her seizures without terrible side effects. It is a difficult process witch affects her stamina, but not her heart. As she searches, Lisa is meeting the challenges of this disorder head on and remains determined not to let epilepsy dim her spirit. Without a doubt, she’s a Winning Kid!

IF YOU HAVE A STORY TO SHARE, CALL 1-800-377-6226 EXT. 1-218 OR E-MAIL ASCHOTTHOEFER@EPILEPSYMICHIGAN.ORG.

Headlines: THE EPILEPSY FOUNDATION OF MICHIGAN SPRING 20078

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

CALENDAR OF EVENTSMARCH

March 23 Youth & Epilepsy

A Panel Presentation (St. Clair County)

March 24 EEG Event

Bowling and Pizza Party (Sterling Heights)

March 27 Pictures of Hope

(Southfield Office)

March 28 Spring Open House (Southfield Office)

APRIL

April 19 Pictures of Hope

(Southfield Office)

April 22 EEG Event

Detroit Tigers Game (Detroit)

MAY

May 8 Kids Speak Up!

& 9th Annual Legislative Recognition Breakfast

(Lansing)

May 8 Pictures of Hope

(Southfield Office)

May 11 Women & Epilepsy

Forum (Novi)

May 12 EEG Event - CJ Barrymore’s Go Carts, Pizza and More

(Macomb County)

May 18 – May 20 Southeast Michigan Weekend

Family Retreat (Taylor)

JUNE

June 2 Kalamazoo Summer Stroll

for Epilepsy

June 9 Detroit Summer Stroll

for Epilepsy (Detroit Zoo)

June 16 Grand Rapids Summer

Stroll for Epilepsy

June 30 Petoskey Summer Stroll for Epilepsy

June 19 Pictures of Hope

(Southfield Office)

JULY

EEG Event Beach Party (Waterford) Date TBD

July 12 Pictures of Hope

(Southfield Office)

July 23 2ND Annual Paul Neu Memorial Golf Classic

Grand Rapids

July 28-29 West Michigan Adult Retreat

(Kalamazoo)

AUGUST

August 1 Summer Open House

(Southfield Office)

August 11 EEG Event

Detroit Shock Game (Auburn Hills)

August 19 – August 23, 2007 Camp Discovery

SEPTEMBER

September 20 Flame of Hope

(West Michigan)

September 22 EEG Event

Apple Orchard/ Pumpkin Patch

September 25 Flame of Hope

(Southeast Michigan)

September 29 – September 30 Southeast Michigan

Weekend Adult Retreat (Taylor)

OCTOBER

October 19 Detroit Epilepsy Today

Conference

October 25 Grand Rapids Epilepsy

Today Conference

NOVEMBER

EPILEPSY AWARENESS MONTH

November 13 Port Huron Epilepsy Today

Conference

DECEMBER

December 4 Gallery of Hope (Birmingham)