ConnectionsEpilepsy

A publicAtion of thE EpilEpsy foundAtion of GrEAtEr chicAGo

Autumn 2010

www.epilepsychicago.org

Epilepsy changes everything. ...Or does it?

THE DATING GAME

non-profit organization

u.s. postage

PAIDpermit no. 111

chicago, ilEpilepsy foundation of Greater chicago17 n. state street, suite 1300chicago, il 60602

BECAUSE It’s Time To Tell Your Story.What are you doing for dinner on saturday, november 6th?

We’ll provide you with everything you need, including an invitation template and a short dVd you can show at your party. Call Erin at 312-939-8622, x208

or visit www.epilepsychicago.org to get started!

1) save the date: November 6, 2010* 2) invite your friends to dinner 3) have fun, ask your friends for their support...and talk about epilepsy!

host your own Epilepsy Awareness fundraiser!

help raise awareness of epilepsy while raising money to support the mission and programs of the Epilepsy foundation of Greater chicago.

Talk About It! @ Dinner...

It’s as Easy as 1...2...3!

(*We know that everyone’s schedule is different, and that not all of you will be able to have your dinner on the 6th. that’s oK! the important thing is that you get together with your friends,

tell your story in whatever way works best for you, let them know why you support the work of the Epilepsy foundation of Greater chicago, and encourage them to do the same.)

Epilepsy and Health Care Reform

Risks and Realities of Medication Switching

Merger Strengthens

Area Epilepsy Services

2

SWITCHING (continued from pg. 9) F O U N D A T I O NOCUS

TENTH ANNUAL EPILEPSY WALK BREAKS ATTENDANCE RECORDS Walkers, runners, and supporters of all ages raised more than $210,000 for the Epilepsy Foundation of Greater Chicago’s 2010 Greater Chicago Epilepsy Walk on May 8 at the Danada Forest Preserve in Wheaton and on May 15 in Chicago’s Lincoln Park. A record 1,800+ individuals took park in the combined events. This year’s top fundraising teams were: Team H ($8,396), Anaya’s Angels ($8,250), and Seizure Free ($7,549). Top individual fundraisers for this year’s event were Nancy Iida ($6,596), Mara Goldman ($4,471), and Morgan Murphy ($3,610). Great job! Thanks to this year’s Presenting Sponsors, Pfizer and Lundbeck Inc., as well as to EVERYONE who helped make our tenth annual walk such a resounding success!

GOLFERS COME OUT SWINGING TO SUPPORT CAMP BLACKHAWK On August 31, 76 golfers enjoyed blue skies and warm sun at Ruffled Feathers Golf Club in Lemont for the Epilepsy Foundation of Greater Chicago’s tenth annual golf outing. This year, participants were once again “Teeing Off for Camp Blackhawk,” our week-long retreat for kids ages 6-18 with epilepsy (see our photo spread on pgs. 6 and 7). Thanks to the participants and sponsors of “Tee Off for Camp Blackhawk”—including our Presenting Sponsor, USG Corporation; and our Cart Sponsor, Lundbeck Inc.—the Foundation was able to raise close to $40,000 to support this very special cause. A huge “thank you” also goes out to our dear friends Jack and Manjula Pfingston, who held their own golf outing, “A Day for Zach,” in memory of their son, who passed away last summer. Their June 28 event drew over 100 participants and raised over $15,000 for Camp Blackhawk.

HOLLYWOOD ROCKS CHICAGO...AND CHICAGO LIVES TO ‘TALK ABOUT IT!’ Hollywood rocked Chicago on June 26 when the all-star “Band from TV” performed at the Vic Theatre for a one-night-only concert to benefit the Epilepsy Foundation of Greater Chicago. The celebrity supergroup features “Heroes” and “Love Bites” star Greg Grunberg, Hugh Laurie and Jesse Spencer from “House”, Jamie Denton from “Desperate Housewives,” Bob Guiney from “The Bachelor,” Adrian Pasdar from “Heroes,” and Scott Grimes from “E.R.” Over 1,000 people packed the Vic for a wild evening of great tunes and epilepsy awareness, helping to raise more than $60,000 for the Foundation. Highlights from the evening were too many to count, although Jesse Spencer’s high-energy balcony-climbing violin solo during the Who’s “Baba O’Riley” certainly made everyone’s top 10.

It should be understood, however, that a generic drug should not be thought of as inferior to the brand formulation. The same rigorous standards that oversee the manufacture of a brand drug are the same as with the gener-ics. While the FDA acknowledges the concern on behalf of many patients and physicians, it has not felt that sufficient reliable evidence has been presented to waver from their stance. However, the FDA has conceded that more research is warranted to help resolve this debate. Regardless, most experts agree that the majority of patients can successfully be switched from a brand version of a drug to the generic equivalent as well as switched from one generic to another. On the other hand, there may be a possibility that a minority of patients can experi-ence either exacerbation of seizures or increased toxicity (due to higher plasma level). Although it is not possible to predict who exactly might be impacted, the physician can order a level of any of the medications while on a branded ver-sion and compare to the level while on the generic version. This, however, may not be a reliable indicator of levels over time and would not reflect substitution of one generic to another that can happen month to month. In the meantime, what should people who are prescribed a seizure medication do? The first thing is to review the prescription with the neurologist. Ask if you are being prescribed the brand name drug or generic. If the generic, ask the neurologist if he or she believes that it will be just as protective as the brand version. If so, ask the physician to write on the prescription, “Ensure

same manufacturer monthly.” Most pharmacies can obtain the generic drug from the same manufacturer monthly if requested. It is not important which manufacturer as long as it is the same month to month. How do you know the name of the company that makes the drug? The label on the bottle should note the name of the company. As such, when a refill is obtained, check to see that the maker is the same. Additionally, you can note if the pill or capsule looks the same (liquids may be difficult to distinguish if the color or taste is the same). These measures should eliminate any significant variation in bioequivalence due to a generic. On the other hand, if your physician indicates brand name only, then again check the label on the bottle to see if the brand name of the drug is noted. Any discrepancy should be brought to the attention of the phar-macist and prescribing physician. In an effort to gather information, people with epilepsy and their physi-cians should report any exacerbation of seizures that might be related to switching formulations to the FDA’s MedWatch program. For information, call 1-800-FDA-1088 or visit the web site at http://www.fda.gov/medwatch.

Roy Sucholeiki, MD, is Medical Director of the Comprehensive Epilepsy Center at Central DuPage Hospital and a member of the Epilepsy Foundation of Greater Chicago’s Professional Advisory Board.

Interested in learning more about the medication ‘switching’ issue? Join Andres Kanner, MD and Debbie Flader for “Brand vs. Generic AEDs: What to Do When You Can’t Afford Your Prescription,” a free education program on Thursday, Nov. 11, 2010

at Alexian Brothers Medical Center, 800 Biesterfield Rd. in Elk Grove Village. Call Tracy at 312-939-8622 x224 to register.

Join us for Chicago’s AnnualEpilepsy Consumer Conference

Visit epilepsychicago.org for the complete agenda.To register, call Tracy Schultz at 312-939-8622 x224.

Holiday Inn Mart Plaza • 350 W. Mart Center Drive, ChicagoSaturday, November 13, 2010

Individuals with epilepsy, their families, and the community are invited to participate in Chicago’s LARGEST epilepsy consumer conference. Join us as we explore the state of

epilepsy treatment, support, and research in the 21st century: Topics to be addressed include:

Refractory Epilepsy and Alternative Treatment Options Women and Epilepsy • SUDEP • New Technologies

Dual Diagnosis in Children and Adults All offered FREE of charge!

11

“The smallest act of kindness is worth more than the grandest intention” - Oscar Wilde I learned for myself what Oscar Wilde meant when I witnessed the im-pact of kindness in action at the River East Art Center in Chicago last Satur-day, where several people with epilepsy came together to celebrate their partici-

pation in the first of our eight-week Spotlight Art Studio sessions. People with epilepsy are coming together to create beautiful art-work, and in doing so, they are creating something else—they are creating new and lasting friendships. How is this happening? Is it a miracle? Absolutely, and this miracle is made possible through the kindness of volunteers. Barbara Marcus, my friend who has a passion for the arts, decided to volunteer her time and creativity. Haley Rittenhouse, Beth VanDerMolen, and Lacy Vitko, three certified art therapists working in Chicago, decided to volunteer their time and talent to help. Jill, an epilepsy nurse, also volunteered her Saturday afternoons to attend and help. What was the result? Powerful, beautiful art pieces created in a beautiful setting, and wonderful personal growth and friendship experiences born, all provided at no cost to people with epilepsy. Another miracle of kindness happened recently in Ingleside Illinois. Several members of our volunteer Board of Directors, doctors, nurses, and industry friends spent their valuable time volunteering at Camp Blackhawk. They donated their time, ex-pertise, and financial resources to help. As a result, the Epilepsy Foundation of Greater Chicago was privileged to send fifty-five children to fill Camp Blackhawk to its capacity—they had a beau-tiful week of fun and freedom, making 2010 our largest camp year ever! Our staff team is made up of the best professionals in non profit. However, we cannot meet our mission alone. There are

more than 125,000 people living with epilepsy in Illinois and we are a small staff. The only way we are going to meet our mission is with your help. Our volunteers are the ones who make it possible for a family to get the clinical care they need at our “Comprehen-sive Epilepsy Clinic” program; for a child with epilepsy to experi-ence the pure joy of a week at Camp Blackhawk with new friends; for an adult with epilepsy to strengthen their ability to enhance, nurture, and protect their health through our “Seven Weeks of Wellness” program; or for a person with epilepsy to build a friend-ship through our “Friends Helping Friends” program. Volunteers are heroes fighting the fight against epi-lepsy. If you’d like to join the fight as a volunteer, there are more opportunities than ever before to become involved in helping families fight epi-lepsy. Call us or e-mail us today to learn more about the many opportunities to volunteer, and let us know your ideas on how you would like to become a partner in the fight against epilepsy. As we enter this time of autumn and Thanksgiving, I am thankful for those special individuals who generously volunteer their time, expertise, and financial resources to make life better for families who come to the Epilepsy Foundation of Greater Chi-cago for help. You represent the best of the Epilepsy Foundation mission and you are making a difference in the lives of people when they need it most—you are changing lives today.

Philip M. Gattone, M.Ed.

3

EPILEPSY FOUNDATION OF GREATER CHICAGO

17 N. State Street, Suite 1300

Chicago, IL 60602312-939-8622 • 800-273-6027

TDD: 312-628-4770 • Fax: 312-939-0391www.epilepsychicago.org

Board of directorsMichael T. Keenan, ChairmanKurt W. Florian, Vice-Chairman

Hellee Johanson, Vice-ChairmanEd Maslak, Vice-Chairman

Andrea Murphy, Vice-ChairmanSteven P. Corda, TreasurerDennis DeCaro, Secretary

Patrick Callaghan Daniel A. Cotter

Scott E. EarlyBrian J. Flynn

Sen. Dan KotowskiMike Lemon

Nichole ManningMadelyn St. Marie Sei

Michael C. Smith, M.D.Roxane DeVos Tyssen

Brian Wiedenhoeft

Professional advisory BoardMichael C. Smith, M.D., Chairman

Jorge Asconapé, M.D.Antoneta Balabanov, M.D.

Gaston Baslet, M.D.Donna Bergen, M.D.

Lawrence P. Bernstein, M.D.Prashanthi Boppana, M.D.

Richard W. Byrne, M.D.Stephen R. Clingerman, Ph.D.

John S. Ebersole, M.D.Jim Fischer, Pharm.D.

Elizabeth E. Gerard, M.D.Andres M. Kanner, M.D.

Michael H. Kohrman, M.D.Marianne Larsen, M.D.

Michael Patrick Macken, M.D.Abdul-Hassein Mazin, M.D., M.P.H.

Douglas R. Nordli, Jr., M.D. Serge J.C. Pierre-Louis, M.D.

Ruzica Ristanovic, M.D.Joshua M. Rosenow, M.D.

Angela Roikobogust, M.S.W., L.C.S.WMarvin A. Rossi, M.D., Ph.D.

Stephan U. Schuele, M.D., M.P.H.Jean-Paul Spire, M.D.

David A. Stumpf, M.D., Ph.D.Roy Sucholeiki, M.D. Jeanne Toguri, R.N.Martha Weber, R.N.

staffPhilip M. Gattone, M.Ed., President & CEO

Garett auriemma • Linda BrinkerStaci Burton • Debbie Flader

Erin Leyden • Morgan Murphy MaryJo Perlongo • Bob Powell Tracy Schultz • B.J. Shoemaker Meredith Taylor • José Valdez

ePilePsy connections is published by the Epilepsy Foundation

of Greater Chicago. All content contained in Epilepsy Connections is for information

purposes only. Do not make changes in your medication or lifestyle without

consulting your physician.

find Us on faceBooKwww.facebook.com/epilepsychicago

folloW Us on tWitter@epilepsychicago

and visit Us on tHe WeBwww.epilepsychicago.org

From the President’s Desk

Volunteers Personify the Miracle of Kindness

Two powerful epilepsy organizations joined forces this past summer, as Epilepsy Foundation of Greater Chicago and the American Epilepsy Outreach Foundation announced a merger of their two organizations. The merger was made effec-tive as of July 1, 2010. As a result of the merger, Erin Leyden, President and Co-Founder of the American Epilepsy Outreach Foundation, will now serve as Vice President of Development for the com-bined organization, which will operate under the Epilepsy Foundation of Greater Chicago name. The combined organization’s mission and focus will re-main the same, addressing the unique needs of the more than 125,000 individuals and families in the greater Chicago area who are affected by epilepsy. “We are so excited for this opportunity,” said Leyden, “I believe that charting a new course and focusing on the epilepsy community throughout the greater Chicago region is necessary in order to create a better future and realize the greatest po-

tential for awareness, support, and advocacy and for the best overall outcomes for the epilepsy community as a whole.” Epilepsy Foundation of Greater Chicago President and CEO Philip M. Gattone added, “Together, we look forward to providing the most comprehensive support for the epilepsy

community through increased access to quality of life programs and re-sources. As partners, we can expand our reach, and help even more people with epilepsy to live their lives to their fullest capability. We are stronger to-

gether, and the epilepsy community will benefit as a result of this merger.” The American Epilepsy Outreach Foundation was founded in 2008 by Erin, her husband Patrick, and Anne Marie Clancy as a national, non-profit organization committed to rais-ing the public’s awareness of epilepsy through advocacy and education—and providing support for those facing the daily challenges of living with epilepsy, including patients, their fami-lies and their friends.

Epilepsy Organizations Stronger Together

Spotlight Art Studio Participants

Kerry can’t keep her boyfriend from worrying. Even though her seizures are well controlled, simply knocking over a glass of water in the bath-room will cause Dan to come in and check on her. “It’s always going to be in the back of his mind, and unfortunately, I

cannot give him the certainty that I will never have another seizure.” Kerry has had epilepsy since she was in junior high school and although having seizures is a very dramatic and frightening experience, she’s been fortunate that they are sporadic and that she has had success with the medi-cation she is on. “I’m lucky in the sense that I am capable of managing my epilepsy,” Kerry says. “Having epilepsy is just one of many facets of who I am.” That outlook has helped Kerry keep epilepsy from hindering her social life and has made her more comfortable telling others about her condition once she feels they have built a connection. From experience, she has found that if someone is comfortable disclosing that they have epilepsy, it helps others accept it. “Your level of comfort eases other people’s feelings,” Kerry explains. “And it’s important to decide how you feel about it. If you can reconcile with yourself, having epilepsy can be less difficult for everyone.” Kerry and Dan have been dating for three years and have been living together since the fall of 2009. They knew each other socially and became friends playing in the same volleyball league. After Kerry injured herself dur-ing a game, Dan took her to the hospital. That’s when he found out she had epilepsy.

“Dan is a caretaker,” Kerry says. “He reacted with concern and curiosity. I’ve noticed that many people don’t know what epilepsy is. They know what seizures are, but they often can’t connect them to epilepsy.” Not long after that, Kerry gave Dan one of her books on epilepsy, just in case he had any ques-tions that he felt he couldn’t ask her directly. Dan’s newfound knowledge did not impact his and Kerry’s relationship. Their friendship grew naturally—they had similar interests, both enjoyed play-ing sports and being outdoors—and eventually their bond led them to begin dating. Even though Dan and Kerry had known each other for years, he had never witnessed her having a seizure. Once he did see her have one, how-ever, his perspective changed significantly. “When he saw it actually happen, his worry factor was taken to a whole new level,” Kerry recalls. “My epilepsy became progressively concerning.” The concern Dan felt did not change the way he felt about her, however. Kerry says that it made him “more engaged.” He made sure he knew her necessary medical information, and began to express his trepidations over the high level of stress in Kerry’s hectic work schedule and social lifestyle. While their relationship caused Kerry to willingly lessen her “partying ways,” she continued to place a large emphasis on building her career. An event plan-ner, Kerry’s job forced her to work long hours. Initially, when Dan expressed his concern over her heavy workload, Kerry did not feel like they were on the same page. “I thought he just didn’t understand my job,” Kerry says. “I didn’t see how working so hard could effect my health—I wasn’t connecting the dots. But Dan

Taking Epilepsy Away To

Epilepsy Answers by roy sucholeiki, Md

Epilepsy Medication “Switching” May Confuse Patients

9

Q: The last time I went to the pharmacy to pick up my epilepsy medication, I found that my prescription had been switched to a different manufacturer. What effect can this have on my seizure control and what steps can I take to prevent this type of medication switching?

A: Over the last few years, as many of the name brand epilepsy medications have gone generic, there has been concern about what effect, if any, there can be on seizure control with their use. There are three situations that have generated worry. First, is that a person may have been on the brand name version of the medication and a switch has been made to a generic version. Second, a person has been on a generic version of the drug and upon refill, a different generic version of the drug is dispensed. Third is less common, where someone has been on a generic drug and then switched to the name brand version. Why do pharmacies switch versions of a drug? There are a number of reasons why this might be done. This happens in part due to the effort pharmacies to lower cost (and increase profit margins). Also, generic substitution can occur when the pharmacy finds that a third party payer will not cover the cost of the branded version but will cover the generic version. There is concern when a switch is done without informing the physician and/or the patient. There can also be switches between generic versions as well. This can be done on a monthly basis depending on which generic version of drug the pharmacy purchases. The pharmacy is not required to inform the patient nor the physician of the switch. However, every state has their own laws or statues governing how medica-tions are dispensed. As in many states, Illinois allows (but does not mandate) generic substitution by a pharmacist if a physician does NOT indicate “brand only” on the prescription. Moreover, if the physician indicates “brand only,” then the phar-macy is required to dispense that version. Also, if the patient requests the branded

version, the pharmacy must dispense this version. In addition to the above, the physician must either communicate orally to the pharmacy or sign the prescription signature line labeled “May not Substitute” or “Dispense as Written.” The Food and Drug Administration (FDA) sets the standards by which manu-facturers can make generic versions or formulations of branded drugs. The manu-facturer must ensure that “bioequivalence” is maintained. The FDA states that this means there should be no significant difference in the rate and extent of availability of the active ingredient at the site of action in the body between different formula-tions. In other words, the absorption and action of the active ingredient should be the same between versions of the generic and the branded form. While the same active ingredient and amount is used by a manufacturer, the inactive ingredients (i.e., coatings, stabilizers, fillers, binders, flavorings, diluents) can vary. However, bioequivalence must still be assured. Bioequivalence, however, does not mean 100% exact. In fact, bioequivalence is defined as falling within 80 to 125% of the reference drug. The vast majority of generic formulations of branded drugs are, indeed, almost the same as the difference between different batches of a particular form of a drug. However, the FDA maintains that the slight variation that may occur between differ-ent versions of the same drug should not affect the efficacy or the side-effects of the drug. That said, there have been anecdotal reports and small studies that seem to suggest that there may be clinically significant issues that arise when one version of the drug is switched to another. This has caused an ongoing controversy and the actual answer to this issue has not yet been resolved. Moreover, the controversy has led to an ongoing debate that unfortunately has caused the general public to become confused regarding the role that medication “switching” may play in terms of the exacerbation of seizures or size effects in individuals with epilepsy.

Epilepsy changes everything.

...Or does it?

THE DATING

GAME

4

By Morgan Murphy director of communications

(continued on pg. 11)

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did. Sometimes you need a partner to really see yourself.”

As soon as Mike walked into the coffee shop where Laura worked, she was instantly drawn

to him and anxiously waited for him to walk up to the counter. He placed his order and after a mo-ment of silence Laura blurted out “do you know anyone who has epilepsy?” Before Mike could even answer, she said “well you do now!” Mike smiled and asked her what having epilepsy was like. As someone who has had two brain surger-ies, Laura readily admits epilepsy has had a huge impact on her life, and “has not made things easy.” She kept her answer simple, however, and began to shift their conversation on to another topic. “Not a day goes by that I don’t think about having epilepsy,” Laura admits, “but for some rea-son I just did not want to make it a big deal when I met Mike.” Brain surgeries, VNS implants, and years of experimenting with several different medications have yet to keep Laura “seizure free” for more than a few months at a time. While she feels fortunate to have a strong support network of friends and fam-ily, she knows that having epilepsy has kept her from developing serious relationships with men. “I’d always think they wouldn’t be able to han-dle me,” she says. “I would be a burden, so I just didn’t put much effort into dating.” Mike made her feel differently, however. She looked forward to his drop-ins at the coffee shop and enjoyed each conversation they had. She loved talking politics and explaining all of the fun facts she knew about coffee. Her co-workers no-ticed that she never spoke about the challenges of having epilepsy, something she feels very passion-ate about, and asked her why. “They were used to me talking about having epilepsy to everyone and anyone who will listen,” Laura says. “I even carry a picture of myself in the hospital right after my first brain surgery. I’ve been proud to be a person with epilepsy, but when I was with Mike, I wanted to forget that I had it.” When Mike was officially proclaimed “a regu-lar” at the coffee shop, Laura’s co-workers sug-gested she invite him to their annual Christmas party. Laura was hesitant, but worked up the cour-age, and was thrilled when he agreed. She bought a new outfit and looked forward to “the big night.” “I couldn’t wait to see him outside of work and decided that it would be a good time to be more up front about how epilepsy impacts my life. I figured that if this is someone who could potentially be my boyfriend, he should be able to accept me for who I am.” The night of the party, Laura made sure the photo of her in the hospital was in her purse and anxiously made her way to her co-worker’s house. She was pleasantly surprised when she arrived

and saw that he was already there. “Just the fact that he came made me feel special, and I couldn’t wait to start talking to him,” Laura recalls. As they sat on the balcony and shared their holiday plans, Laura decided it was the perfect time to tell Mike “who I really am.” With butterflies in her stomach, Laura began to think through how she would bring up the topic, when unexpectedly, she felt the “aura” she typically has before a tonic clonic seizure. Ten minutes later, when Laura woke up on the floor with a pillow under her head and her friends sitting by her side, it took her a few minutes

to realize what had happened. She assured every-one that she was fine and couldn’t help but notice that Mike was gone. “I felt terrible,” Laura says. “I was frustrated that I had a seizure, but the fact that he left made my heart drop.” Laura’s co-workers encouraged her to not take it personally and that it only proved that “he was not the right kind of guy.” It was difficult, but Laura eventually moved on. Mike stopped by the coffee shop a couple of weeks later to see how Laura was doing. “He told me he was sorry he left the party, but seeing me have a seizure was very overwhelming and he didn’t know how to react,” Laura says. “I told him that was OK. Epilepsy is hard for every-one. I moved on and will hopefully one day find someone who is up for the challenge.” Mike’s reaction to Laura’s epilepsy was, unfortunately, not uncommon. Despite the great

strides being made in public understanding and acceptance of people with epilepsy, many people still find it to be a difficult hurdle to overcome in the dating realm. A recent survey of teens showed that less than a third of them would consider dat-ing someone that they knew had epilepsy. And nearly half of the teens surveyed were uncertain as whether or not they thought people with epilepsy should ever have children.

Kerry’s realization of the impact epilepsy could have on her life forced her to approach things

differently. Dan’s concern and support enabled her

to make an active decision to take better care of herself. “Even if your seizures are sporadic, they are still there,” Kerry says. “When they don’t happen that often, they can be easy to neglect, but they can’t be disregarded. I changed my lifestyle—both work-wise and socially—because Dan helped me realize that and now I am focused on my health and taking care of myself.” While Kerry and Dan have a supportive and understanding relationship, epilepsy is still some-thing they rarely talk about. “It’s hard to talk about because then you have to think about it.” Even though Dan has not read the book about epilepsy that Kerry gave him after she initially told him she has it, she knows he is there to support and guide her. “It took me ten years to open that book, so I understand how he’s feeling. It’s scary, and fortu-nately, I know he’s still there for me.”

IS EPILEPSY A DEALBREAKER? A survey of teenagers in the United States showed that over half either were certain they wouldn’t date someone with epilepsy, or were unsure if they would. Less than a third said they were certain that they could date a person who had epilepsy.

The Epilepsy Foundation has supported health care reform efforts that will open up access to insurance for millions of Americans with pre-existing con-ditions, enhance coverage for children, ensure that insurance coverage is affordable, and provide coverage for the medical services and treatments

that people with epilepsy need. The Affordable Care Act is a historic health care reform bill and the Epilepsy Foundation is pleased that our principles for health reform are all addressed in this legislation. For people with epilepsy, the new health care law will transform their access to health insurance, most notably by putting an end to pre-existing condition exclusions and denials of coverage due to health status. Along with the consumer benefits to provide free (or nearly free) routine preventive care, limiting out-of-pocket expenses (such as deductibles and co-payments), and eliminating lifetime caps (or annual limits) on health insurance coverage, individuals will have more financial and coverage security than the current system provides. The new changes to health insurance that are now law will be implemented over the next 3 years. Many of the changes will take effect fully in 2014. In the meantime there is a $250 rebate and upcoming reduced drug costs for people on Medicare Part D; incentives to help increase the number of primary care doctors; help for states to review insurance company rate increases to protect consumers; and many changes to coverage for young adults. In addition, there will be new in-surance options for individuals with pre-existing conditions (like epilepsy) who have been denied coverage, or faced with unaffordable insurance options. Families of young adults and children who have epilepsy will find new oppor-tunities to provide meaningful coverage or maintain their current coverage because of the new law. Children and young adults will be able to stay on their parent’s policy longer. As many parents know, it has been very difficult for young adults who age out of their parent’s policy to find coverage that meets their needs and does not exclude coverage for their epilepsy care. This happens for most children and young adults when they graduate from high school or college, when they turn a certain age (plans can vary and eliminate coverage for dependent young adults after age 18–24 most commonly), or when they no longer live at home and begin working. The new reforms will help adult children, who would otherwise likely lose all coverage options especially for care for a pre-existing condition, stay on their current policy. Here are a few basic answers about these changes for children and young adults and resources for you:

Will my plan cover my children up to age 26 now?It depends on when your policy coverage began. These changes are for plans or group policies that take effect after September 23, 2010. For new plans and poli-cies beginning after this date, insurers who offer dependent coverage must offer coverage to enrollees’ adult children until age 26. For current policies, it may not

change until the next time your plan or group policy (such as an employer policy) is renewed or begins a new contract. It is also important to note that your insurer has the option to begin this coverage now, so you should find out if it is available and, if you have employer coverage, find out what your employer plan will offer for adult children and when. If my policy is covering my adult children, do they have to live with me or be a dependent?For most adult children, the answer is yes --- even if the young adult no longer lives with his or her parents, is not a dependent on a parent’s tax return, or is no longer a student. The new policy will even provide access for married adult children; however it will not apply to their spouses or children. There is a transition and exception for some existing group plans that have not provided dependent coverage until 2014— if the adult child has the ability to purchase their own employer coverage aside from coverage through their parent. Will the coverage for adult children be different?No, adult children covered by these new changes must be offered the same benefits and premiums. What should I do to get this coverage?Find out if your plan or policy is making this change now and, if you don’t have an immediate option for this coverage, watch for open enrollment.

Will I be taxed for the coverage of my adult child or the employer contribution to this coverage? No. Employer and employee contributions for this coverage are excluded from your income under new IRS rules that were part of the new health care law. This is effective as of March 30, 2010, and the tax exclusion applies to any coverage that is provided to an adult child from that date through the end of the taxable year in which the child turns 26. How can I learn more?Find out more about health reform and what the Epilepsy Foundation is doing to support implementation that includes the needs of people with epilepsy, by visiting the Epilepsy Foundation’s government relations Web site at: www.epilepsyfounda-tion.org/advocacy. You can also find out more about this new law and adult children on www.healthreform.gov.

Angela Ostrom is the Epilepsy Foundation’s director of federal relations. This article is reprinted from epilepsyUSA.

By Angela ostrom special to Epilepsy Connections

HEALTH CARE REFORM:

What Does It Mean for People with Epilepsy?

6 7

Greetings From...camp blackhawk

Red Leaf Village • Ingleside, IL • July 18 - 23, 2010

8 58

did. Sometimes you need a partner to really see yourself.”

As soon as Mike walked into the coffee shop where Laura worked, she was instantly drawn

to him and anxiously waited for him to walk up to the counter. He placed his order and after a mo-ment of silence Laura blurted out “do you know anyone who has epilepsy?” Before Mike could even answer, she said “well you do now!” Mike smiled and asked her what having epilepsy was like. As someone who has had two brain surger-ies, Laura readily admits epilepsy has had a huge impact on her life, and “has not made things easy.” She kept her answer simple, however, and began to shift their conversation on to another topic. “Not a day goes by that I don’t think about having epilepsy,” Laura admits, “but for some rea-son I just did not want to make it a big deal when I met Mike.” Brain surgeries, VNS implants, and years of experimenting with several different medications have yet to keep Laura “seizure free” for more than a few months at a time. While she feels fortunate to have a strong support network of friends and fam-ily, she knows that having epilepsy has kept her from developing serious relationships with men. “I’d always think they wouldn’t be able to han-dle me,” she says. “I would be a burden, so I just didn’t put much effort into dating.” Mike made her feel differently, however. She looked forward to his drop-ins at the coffee shop and enjoyed each conversation they had. She loved talking politics and explaining all of the fun facts she knew about coffee. Her co-workers no-ticed that she never spoke about the challenges of having epilepsy, something she feels very passion-ate about, and asked her why. “They were used to me talking about having epilepsy to everyone and anyone who will listen,” Laura says. “I even carry a picture of myself in the hospital right after my first brain surgery. I’ve been proud to be a person with epilepsy, but when I was with Mike, I wanted to forget that I had it.” When Mike was officially proclaimed “a regu-lar” at the coffee shop, Laura’s co-workers sug-gested she invite him to their annual Christmas party. Laura was hesitant, but worked up the cour-age, and was thrilled when he agreed. She bought a new outfit and looked forward to “the big night.” “I couldn’t wait to see him outside of work and decided that it would be a good time to be more up front about how epilepsy impacts my life. I figured that if this is someone who could potentially be my boyfriend, he should be able to accept me for who I am.” The night of the party, Laura made sure the photo of her in the hospital was in her purse and anxiously made her way to her co-worker’s house. She was pleasantly surprised when she arrived

and saw that he was already there. “Just the fact that he came made me feel special, and I couldn’t wait to start talking to him,” Laura recalls. As they sat on the balcony and shared their holiday plans, Laura decided it was the perfect time to tell Mike “who I really am.” With butterflies in her stomach, Laura began to think through how she would bring up the topic, when unexpectedly, she felt the “aura” she typically has before a tonic clonic seizure. Ten minutes later, when Laura woke up on the floor with a pillow under her head and her friends sitting by her side, it took her a few minutes

to realize what had happened. She assured every-one that she was fine and couldn’t help but notice that Mike was gone. “I felt terrible,” Laura says. “I was frustrated that I had a seizure, but the fact that he left made my heart drop.” Laura’s co-workers encouraged her to not take it personally and that it only proved that “he was not the right kind of guy.” It was difficult, but Laura eventually moved on. Mike stopped by the coffee shop a couple of weeks later to see how Laura was doing. “He told me he was sorry he left the party, but seeing me have a seizure was very overwhelming and he didn’t know how to react,” Laura says. “I told him that was OK. Epilepsy is hard for every-one. I moved on and will hopefully one day find someone who is up for the challenge.” Mike’s reaction to Laura’s epilepsy was, unfortunately, not uncommon. Despite the great

strides being made in public understanding and acceptance of people with epilepsy, many people still find it to be a difficult hurdle to overcome in the dating realm. A recent survey of teens showed that less than a third of them would consider dat-ing someone that they knew had epilepsy. And nearly half of the teens surveyed were uncertain as whether or not they thought people with epilepsy should ever have children.

Kerry’s realization of the impact epilepsy could have on her life forced her to approach things

differently. Dan’s concern and support enabled her

to make an active decision to take better care of herself. “Even if your seizures are sporadic, they are still there,” Kerry says. “When they don’t happen that often, they can be easy to neglect, but they can’t be disregarded. I changed my lifestyle—both work-wise and socially—because Dan helped me realize that and now I am focused on my health and taking care of myself.” While Kerry and Dan have a supportive and understanding relationship, epilepsy is still some-thing they rarely talk about. “It’s hard to talk about because then you have to think about it.” Even though Dan has not read the book about epilepsy that Kerry gave him after she initially told him she has it, she knows he is there to support and guide her. “It took me ten years to open that book, so I understand how he’s feeling. It’s scary, and fortu-nately, I know he’s still there for me.”

IS EPILEPSY A DEALBREAKER? A survey of teenagers in the United States showed that over half either were certain they wouldn’t date someone with epilepsy, or were unsure if they would. Less than a third said they were certain that they could date a person who had epilepsy.

The Epilepsy Foundation has supported health care reform efforts that will open up access to insurance for millions of Americans with pre-existing con-ditions, enhance coverage for children, ensure that insurance coverage is affordable, and provide coverage for the medical services and treatments

that people with epilepsy need. The Affordable Care Act is a historic health care reform bill and the Epilepsy Foundation is pleased that our principles for health reform are all addressed in this legislation. For people with epilepsy, the new health care law will transform their access to health insurance, most notably by putting an end to pre-existing condition exclusions and denials of coverage due to health status. Along with the consumer benefits to provide free (or nearly free) routine preventive care, limiting out-of-pocket expenses (such as deductibles and co-payments), and eliminating lifetime caps (or annual limits) on health insurance coverage, individuals will have more financial and coverage security than the current system provides. The new changes to health insurance that are now law will be implemented over the next 3 years. Many of the changes will take effect fully in 2014. In the meantime there is a $250 rebate and upcoming reduced drug costs for people on Medicare Part D; incentives to help increase the number of primary care doctors; help for states to review insurance company rate increases to protect consumers; and many changes to coverage for young adults. In addition, there will be new in-surance options for individuals with pre-existing conditions (like epilepsy) who have been denied coverage, or faced with unaffordable insurance options. Families of young adults and children who have epilepsy will find new oppor-tunities to provide meaningful coverage or maintain their current coverage because of the new law. Children and young adults will be able to stay on their parent’s policy longer. As many parents know, it has been very difficult for young adults who age out of their parent’s policy to find coverage that meets their needs and does not exclude coverage for their epilepsy care. This happens for most children and young adults when they graduate from high school or college, when they turn a certain age (plans can vary and eliminate coverage for dependent young adults after age 18–24 most commonly), or when they no longer live at home and begin working. The new reforms will help adult children, who would otherwise likely lose all coverage options especially for care for a pre-existing condition, stay on their current policy. Here are a few basic answers about these changes for children and young adults and resources for you:

Will my plan cover my children up to age 26 now?It depends on when your policy coverage began. These changes are for plans or group policies that take effect after September 23, 2010. For new plans and poli-cies beginning after this date, insurers who offer dependent coverage must offer coverage to enrollees’ adult children until age 26. For current policies, it may not

change until the next time your plan or group policy (such as an employer policy) is renewed or begins a new contract. It is also important to note that your insurer has the option to begin this coverage now, so you should find out if it is available and, if you have employer coverage, find out what your employer plan will offer for adult children and when. If my policy is covering my adult children, do they have to live with me or be a dependent?For most adult children, the answer is yes --- even if the young adult no longer lives with his or her parents, is not a dependent on a parent’s tax return, or is no longer a student. The new policy will even provide access for married adult children; however it will not apply to their spouses or children. There is a transition and exception for some existing group plans that have not provided dependent coverage until 2014— if the adult child has the ability to purchase their own employer coverage aside from coverage through their parent. Will the coverage for adult children be different?No, adult children covered by these new changes must be offered the same benefits and premiums. What should I do to get this coverage?Find out if your plan or policy is making this change now and, if you don’t have an immediate option for this coverage, watch for open enrollment.

Will I be taxed for the coverage of my adult child or the employer contribution to this coverage? No. Employer and employee contributions for this coverage are excluded from your income under new IRS rules that were part of the new health care law. This is effective as of March 30, 2010, and the tax exclusion applies to any coverage that is provided to an adult child from that date through the end of the taxable year in which the child turns 26. How can I learn more?Find out more about health reform and what the Epilepsy Foundation is doing to support implementation that includes the needs of people with epilepsy, by visiting the Epilepsy Foundation’s government relations Web site at: www.epilepsyfounda-tion.org/advocacy. You can also find out more about this new law and adult children on www.healthreform.gov.

Angela Ostrom is the Epilepsy Foundation’s director of federal relations. This article is reprinted from epilepsyUSA.

By Angela ostrom special to Epilepsy Connections

HEALTH CARE REFORM:

What Does It Mean for People with Epilepsy?

Kerry can’t keep her boyfriend from worrying. Even though her seizures are well controlled, simply knocking over a glass of water in the bath-room will cause Dan to come in and check on her. “It’s always going to be in the back of his mind, and unfortunately, I

cannot give him the certainty that I will never have another seizure.” Kerry has had epilepsy since she was in junior high school and although having seizures is a very dramatic and frightening experience, she’s been fortunate that they are sporadic and that she has had success with the medi-cation she is on. “I’m lucky in the sense that I am capable of managing my epilepsy,” Kerry says. “Having epilepsy is just one of many facets of who I am.” That outlook has helped Kerry keep epilepsy from hindering her social life and has made her more comfortable telling others about her condition once she feels they have built a connection. From experience, she has found that if someone is comfortable disclosing that they have epilepsy, it helps others accept it. “Your level of comfort eases other people’s feelings,” Kerry explains. “And it’s important to decide how you feel about it. If you can reconcile with yourself, having epilepsy can be less difficult for everyone.” Kerry and Dan have been dating for three years and have been living together since the fall of 2009. They knew each other socially and became friends playing in the same volleyball league. After Kerry injured herself dur-ing a game, Dan took her to the hospital. That’s when he found out she had epilepsy.

“Dan is a caretaker,” Kerry says. “He reacted with concern and curiosity. I’ve noticed that many people don’t know what epilepsy is. They know what seizures are, but they often can’t connect them to epilepsy.” Not long after that, Kerry gave Dan one of her books on epilepsy, just in case he had any ques-tions that he felt he couldn’t ask her directly. Dan’s newfound knowledge did not impact his and Kerry’s relationship. Their friendship grew naturally—they had similar interests, both enjoyed play-ing sports and being outdoors—and eventually their bond led them to begin dating. Even though Dan and Kerry had known each other for years, he had never witnessed her having a seizure. Once he did see her have one, how-ever, his perspective changed significantly. “When he saw it actually happen, his worry factor was taken to a whole new level,” Kerry recalls. “My epilepsy became progressively concerning.” The concern Dan felt did not change the way he felt about her, however. Kerry says that it made him “more engaged.” He made sure he knew her necessary medical information, and began to express his trepidations over the high level of stress in Kerry’s hectic work schedule and social lifestyle. While their relationship caused Kerry to willingly lessen her “partying ways,” she continued to place a large emphasis on building her career. An event plan-ner, Kerry’s job forced her to work long hours. Initially, when Dan expressed his concern over her heavy workload, Kerry did not feel like they were on the same page. “I thought he just didn’t understand my job,” Kerry says. “I didn’t see how working so hard could effect my health—I wasn’t connecting the dots. But Dan

Taking Epilepsy Away To

Epilepsy Answers by roy sucholeiki, Md

Epilepsy Medication “Switching” May Confuse Patients

9

Q: The last time I went to the pharmacy to pick up my epilepsy medication, I found that my prescription had been switched to a different manufacturer. What effect can this have on my seizure control and what steps can I take to prevent this type of medication switching?

A: Over the last few years, as many of the name brand epilepsy medications have gone generic, there has been concern about what effect, if any, there can be on seizure control with their use. There are three situations that have generated worry. First, is that a person may have been on the brand name version of the medication and a switch has been made to a generic version. Second, a person has been on a generic version of the drug and upon refill, a different generic version of the drug is dispensed. Third is less common, where someone has been on a generic drug and then switched to the name brand version. Why do pharmacies switch versions of a drug? There are a number of reasons why this might be done. This happens in part due to efforts of pharmacies to lower cost (and increase profit margins). Also, generic substitution can occur when the pharmacy finds that a third party payer will not cover the cost of the branded version but will cover the generic version. There is concern when a switch is done without informing the physician and/or the patient. There can also be switches between generic versions as well. This can be done on a monthly basis depending on which generic version of drug the pharmacy purchases. The pharmacy is not required to inform the patient nor the physician of the switch. However, every state has their own laws or statues governing how medica-tions are dispensed. As in many states, Illinois allows (but does not mandate) generic substitution by a pharmacist if a physician does NOT indicate “brand only” on the prescription. Moreover, if the physician indicates “brand only,” then the phar-macy is required to dispense that version. Also, if the patient requests the branded

version, the pharmacy must dispense this version. In addition to the above, the physician must either communicate orally to the pharmacy or sign the prescription signature line labeled “May not Substitute” or “Dispense as Written.” The Food and Drug Administration (FDA) sets the standards by which manu-facturers can make generic versions or formulations of branded drugs. The manu-facturer must ensure that “bioequivalence” is maintained. The FDA states that this means there should be no significant difference in the rate and extent of availability of the active ingredient at the site of action in the body between different formula-tions. In other words, the absorption and action of the active ingredient should be the same between versions of the generic and the branded form. While the same active ingredient and amount is used by a manufacturer, the inactive ingredients (i.e., coatings, stabilizers, fillers, binders, flavorings, diluents) can vary. However, bioequivalence must still be assured. Bioequivalence, however, does not mean 100% exact. In fact, bioequivalence is defined as falling within 80 to 125% of the reference drug. The vast majority of generic formulations of branded drugs are, indeed, almost the same as the difference between different batches of a particular form of a drug. However, the FDA maintains that the slight variation that may occur between differ-ent versions of the same drug should not affect the efficacy or the side-effects of the drug. That said, there have been anecdotal reports and small studies that seem to suggest that there may be clinically significant issues that arise when one version of the drug is switched to another. This has caused an ongoing controversy and the actual answer to this issue has not yet been resolved. Moreover, the controversy has led to an ongoing debate that unfortunately has caused the general public to become confused regarding the role that medication “switching” may play in terms of the exacerbation of seizures or size effects in individuals with epilepsy.

Epilepsy changes everything.

...Or does it?

THE DATING

GAME

4

By Morgan Murphy director of communications

(continued on pg. 11)

“The smallest act of kindness is worth more than the grandest intention” - Oscar Wilde I learned for myself what Os-car Wilde meant when I witnessed the impact of kindness in action at the River East Art Center in Chicago last Saturday, where several people with epilepsy came together to celebrate

their participation in the first of our eight-week Spotlight Art Stu-dio sessions. People with epilepsy are coming together to create beautiful artwork, and in doing so, they are creating something else—they are creating new and lasting friendships. How is this happening? Is it a miracle? Absolutely, and this miracle is made possible through the kindness of volunteers. Barbara Marcus, my friend who has a passion for the arts, decided to volunteer her time and creativity. Lacy, Haley and Beth, three certified art therapists working in Chicago, decided to volunteer their time and talent to help. Jill, an epilepsy nurse, also volunteered her Saturday afternoons to attend and help. What was the result? Powerful, beautiful art pieces created in a beauti-ful setting, and wonderful personal growth and friendship experi-ences born, all provided at no cost to people with epilepsy. Another miracle of kindness happened recently in Ingleside Illinois. Several members of our volunteer Board of Directors, doctors, nurses, and industry friends spent their valuable time volunteering at Camp Blackhawk. They donated their time, ex-pertise, and financial resources to help. As a result, the Epilepsy Foundation of Greater Chicago was privileged to send fifty-five children to fill Camp Blackhawk to its capacity—they had a beau-tiful week of fun and freedom, making 2010 our largest camp year ever! Our staff team is made up of the best professionals in non profit. However, we cannot meet our mission alone. There are

more than 125,000 people living with epilepsy in Illinois and we are a small staff. The only way we are going to meet our mis-sion is with your help. Our volunteers are the ones who make it possible for a family to get the clinical care they need at our “Comprehensive Epi-lepsy Clinic” program; for a child with epilepsy to experi-ence the pure joy of a week at Camp Blackhawk with new friends; for an adult with epilepsy to strengthen their ability to enhance, nur-ture, and protect their health through our “Seven Weeks of Wellness” program; or for a person with epilepsy to build a friendship through our “Friends Helping Friends” program. Volunteers are heroes fighting the fight against epilepsy. If you’d like to join the fight as a volunteer, there are more oppor-tunities than ever before to become involved in helping families fight epilepsy. Call us or e-mail us today to learn more about the many opportunities to volunteer, and let us know your ideas on how you’d like to become a partner in the fight against epilepsy. As we enter this time of autumn and Thanksgiving, I am thankful for those special individuals who generously volunteer their time, expertise, and financial resources to make life better for families who come to the Epilepsy Foundation of Greater Chi-cago for help. You represent the best of the Epilepsy Foundation mission and you are making a difference in the lives of people when they need it most—you are changing lives today.

Philip M. Gattone, M.Ed.

-

10

upcoming

Events“Meeting of the Minds on Epilepsy” Education SeriesThe Epilepsy Foundation of Greater Chicago, Cyberonics, and Alexian Brothers Medical Cen-ter present this free educational series. Upcoming programs include:Monday, October 18, 2010 • St. Alexius Medical Center • Hoffman Estates“New Advances in Epilepsy Research and Resources”Thursday, Nov. 11, 2010 • Alexian Bros. Medical Center • Elk Grove Village “Brand vs. Generic AEDs: What to Do When You Can’t Afford Your Prescription”Programs run from 6:00-8:00 pm and include Q&A sessions. Call Tracy at 312-939-8622 x224 to RSVP.

Talk About It! @ DinnerSaturday, November 6, 2010 Your Dining RoomHang out with friends, have dinner, and help spread awareness of epilepsy! November is Epilepsy Awareness Month, and to cel-ebrate, we’re going to once again “Talk About It at Dinner.” On

Saturday, November 6, people all over the Greater Chicago area are encouraged to eat, have fun, and talk about epilepsy. By inviting your friends over to “Talk About It at Dinner,” you’ll be helping the Epilepsy Foundation of Greater Chicago provide vital services and improve the quality of life for people living with epilepsy. For more information on how you can host a “Talk About It At Dinner” event, call Erin at 312-939-8622, x208.

Chicago Epilepsy Consumer ConferenceSaturday, November 13, 2010Holiday Inn Mart Plaza • Chicago, ILThe Epilepsy Foundation of Greater Chicago’s Epilepsy Consumer Conference returns, fea-turing a full FREE day of informative presentations, panel discussions, and interactive educa-tional sessions on the current state of epilepsy treatment, support, and research. This year’s conference will be held in downtown Chicago at the Holiday Inn Mart Plaza, located at 350 West Mart Center Drive, adjacent to the Merchandise Mart. The venue is easily accessible via public transportation (Brown/Purple Lines to Merchandise Mart, and numerous bus routes, including #11 and #125). Parking will be made available at a reduced rate for those who drive. There is no cost to attend, but advance registration is required. Call Tracy at 312-939-8622, x224 for more information or to reserve your space. Edison Park Chamber of Commerce Turkey TrotThursday, November 25, 2010Edison Park Fieldhouse • Chicago, ILBefore you get your fill of turkey and stuffing, work off those calories in advance by taking part in the 14th annual Edison Park Turkey Trot! This year, the Epilepsy Foundation of Greater Chicago has been chosen as a beneficiary of the event. The run/walk begins at 9:30 am at the Edison Park Fieldhouse, 6755 N. Northwest Highway, in Chicago. Advance registration is $20, and $25 on race day. For more info, go to www.epturkeytrot.com. “Help the ELF” Children’s Holiday Gift Giving Program

December, 2010All Across ChicagolandNow in its fourth year, the “Help the E.L.F. (Emmett Leyden’s Friends)” program was started with the mission of distributing seizure-safe toys to kids with epilepsy who are spending time in the hospital over the holidays. Volunteers are encouraged to help solicit in-kind donations, as well as to help coordinate distribution of toys. The “E.L.F.” can also use your donations to help make kids’ holidays a little brighter.

To learn more about how you can “Help the E.L.F.” this year, please e-mail Brendan Leyden (cousin to Emmett, after whom the program is named) at helptheelf@yahoo.com. Have an idea for your own fundraiser? Call Erin at 312-939-8622, x208.

ADULT GROUPSChicago, Loop 2nd Thursday at NoonEpilepsy Foundation Office 17 N. State St., #1300, Chicago

Chicago, Loop3rd Saturday at NoonEpilepsy Foundation Office 17 N. State St., #1300, Chicago

Chicago, Loop (Spanish)1st Friday at 10 amEpilepsy Foundation Office 17 N. State St., #1300, Chicago

Chicago, North Side (Spanish)3rd Wednesday at 2 pmLogan Square Health Clinic 2840 W. Fullerton, Chicago

Chicago, Northwest Side1st Wednesday at 6:30 pmOur Lady of the Resurrection Med. Ctr.5645 W. Addison, Chicago

Chicago, South Side(Spanish, Women)1st Monday at 10 amPius V Church1919 S. Ashland, Chicago

Chicago, West Loop (Eng/Span)4th Friday at 10 amStroger Hospital, 1900 W. Polk St., Room LL665, Chicago(Group will be held in English on even months and Spanish on odd months)

Elgin 4th Thursday at 7 pmSt. Joseph’s Hospital77 N. Airlite, St. Luke Rm., Elgin

Evanston2nd Thursday at 7 pmEvanston Hospital2650 Ridge Rd., Rm. G952-956Evanston

Evergreen Park 2nd Tuesday at 6:30 pmLittle Company of Mary Hospital 2800 W. 95th St.,Tower Bldg, 6th Floor, Evergreen Park

Oak Park 1st & 3rd Tuesday at 6:30 pmOak Park Hospital, 520 S. Maple, Oak Park

St. Charles1st Tuesday 7 pmHosanna Luthern Church36W925 Red Gate Rd.St. Charles

Winfield/Carol Stream 2nd Wednesday at 7 pmCentral DuPage Hospital 25 N. Winfield Rd., Winfield

Chicago, South 1st Saturday at Noon University of Chicago Comer Children’s Hospital 5841 S. Maryland Ave., Chicago

Chicago, South (Spanish)1st Monday at 10 amPius V Church 1919 S. Ashland, Chicago

Evanston2nd Thursday at 7 pmEvanston Hospital2650 Ridge Rd., Rm. G952-956Evanston

Schaumburg/Hoffman Estates/ Elk Grove VillageLast Wednesday at 7:30 pmAlexian Brothers Medical Center800 Biesterfield Rd., Eberle Bldg.Elk Grove Village

West Suburban Mothers Group3rd Saturday at 7 pmMeeting location varies. Call Tracy (312-939-8622, x224) for location information. Winfield/Carol Stream 2nd Wednesday at 7 pmCentral DuPage Hospital 25 N. Winfield Rd., Winfield

PARENT GROUPS

TEEN GROUP Chicago and SuburbsOne Saturday each month Time and location vary due to special outings. Call Tracy (312-939-8622, x224) for info

Times, dates, and locations of all support groups are subject to change. Except where indicated, please call the Epilepsy Foundation office at 312-939-8622 before attending any group for the first time.

EPILEPSY SUPPORT GROUP NETWORK

SENIOR GROUPChicago, Downtown3rd Friday at 10 am Epilepsy Foundation Office17 N. State St., #1300, Chicago

YOUNG ADULT GROUP Chicago, Downtown 4th Wednesday 3 pm - 4:30 pm Epilepsy Foundation Office 17 N. State St., #1300, Chicago

Chicago, Adult Social Club1st & 3rd Tuesday at 1 pmEpilepsy Foundation Office17 N. State St., #1300, Chicago

Chicago, Adult Job Club2nd & 4th Thursday at 10:30 amEpilepsy Foundation Office17 N. State St., #1300, Chicago

3

EpilEpsy foundAtion of GrEAtEr chicAGo

17 n. state street, suite 1300

chicago, il 60602312-939-8622 • 800-273-6027

TDD: 312-628-4770 • Fax: 312-939-0391www.epilepsychicago.org

BoArD of DIrECtorSMichael t. Keenan, ChairmanKurt W. florian, Vice-Chairman

hellee Johanson, Vice-ChairmanEd Maslak, Vice-Chairman

Andrea Murphy, Vice-Chairmansteven p. corda, Treasurerdennis decaro, Secretary

patrick callaghan daniel A. cotter

scott E. Earlybrian J. flynn

sen. dan KotowskiMike lemon

nichole ManningMadelyn st. Marie sei

Michael c. smith, M.d.roxane deVos tyssen

brian Wiedenhoeft

ProfESSIoNAl ADvISory BoArDMichael c. smith, M.d., Chairman

Jorge Asconapé, M.d.Antoneta balabanov, M.d.

Gaston baslet, M.d.donna bergen, M.d.

lawrence p. bernstein, M.d.prashanthi boppana, M.d.

richard W. byrne, M.d.stephen r. clingerman, ph.d.

John s. Ebersole, M.d.Jim fischer, pharm.d.

Elizabeth E. Gerard, M.d.Andres M. Kanner, M.d.

Michael h. Kohrman, M.d.Marianne larsen, M.d.

Michael patrick Macken, M.d.Abdul-hassein Mazin, M.d., M.p.h.

douglas r. nordli, Jr., M.d. serge J.c. pierre-louis, M.d.

ruzica ristanovic, M.d.Joshua M. rosenow, M.d.

Angela roikobogust, M.s.W., l.c.s.WMarvin A. rossi, M.d., ph.d.

stephan u. schuele, M.d., M.p.h.Jean-paul spire, M.d.

david A. stumpf, M.d., ph.d.roy sucholeiki, M.d. Jeanne toguri, r.n.Martha Weber, r.n.

StAffphilip M. Gattone, M.Ed., President & CEO

Garett auriemma • linda brinkerStaci Burton • Debbie Flader

Erin Leyden • Morgan Murphy MaryJo Perlongo • Bob Powell Tracy Schultz • B.J. Shoemaker Meredith Taylor • José Valdez

EPIlEPSy CoNNECtIoNS is published by the Epilepsy foundation

of Greater chicago. All content contained in Epilepsy Connections is for information

purposes only. do not make changes in your medication or lifestyle without

consulting your physician.

fIND US oN fACEBooKwww.facebook.com/EpilepsyChicago

FOLLOW US ON TWITTER@EpilepsyChicago

AND VISIT US ON THE WEBwww.epilepsychicago.org

from the president’s desk

Volunteers Personify the Miracle of Kindness

Two powerful epilepsy organizations joined forces this past summer, as Epilepsy Foundation of Greater Chicago and the American Epilepsy Outreach Foundation announced a merger of their two organizations. The merger was made effec-tive as of July 1, 2010. As a result of the merger, Erin Leyden, President and Co-Founder of the American Epilepsy Outreach Foundation, will now serve as Vice President of Development for the com-bined organization, which will operate under the Epilepsy Foundation of Greater Chicago name. The combined organization’s mission and focus will re-main the same, addressing the unique needs of the more than 125,000 individuals and families in the greater Chicago area who are affected by epilepsy. “We are so excited for this opportunity,” said Leyden, “I believe that charting a new course and focusing on the epilepsy community throughout the greater Chicago region is necessary in order to create a better future and realize the greatest po-

tential for awareness, support, and advocacy and for the best overall outcomes for the epilepsy community as a whole.” Epilepsy Foundation of Greater Chicago President and CEO Philip M. Gattone added, “Together, we look forward to providing the most comprehensive support for the epilepsy

community through increased access to quality of life programs and re-sources. As partners, we can expand our reach, and help even more people with epilepsy to live their lives to their fullest capability. We are stronger to-

gether, and the epilepsy community will benefit as a result of this merger.” The American Epilepsy Outreach Foundation was founded in 2008 by Erin, her husband Patrick, and Anne Marie Clancy as a national, non-profit organization committed to rais-ing the public’s awareness of epilepsy through advocacy and education—and providing support for those facing the daily challenges of living with epilepsy, including patients, their fami-lies and their friends.

Epilepsy Organizations Stronger Together

2

SWITCHING (continued from pg. 9) F O U N D A T I O NOCUS

TENTH ANNUAL EPILEPSY WALK BREAKS ATTENDANCE RECORDS Walkers, runners, and supporters of all ages raised more than $210,000 for the Epilepsy Foundation of Greater Chicago’s 2010 Greater Chicago Epilepsy Walk on May 8 at the Danada Forest Preserve in Wheaton and on May 15 in Chicago’s Lincoln Park. A record 1,800+ individuals took park in the combined events. This year’s top fundraising teams were: Team H ($8,396), Anaya’s Angels ($8,250), and Seizure Free ($7,549). Top individual fundraisers for this year’s event were Nancy Iida ($6,596), Mara Goldman ($4,471), and Morgan Murphy ($3,610). Great job! Thanks to this year’s Presenting Sponsors, Pfizer and Lundbeck Inc., as well as to EVERYONE who helped make our tenth annual walk such a resounding success!

GOLFERS COME OUT SWINGING TO SUPPORT CAMP BLACKHAWK On August 31, 76 golfers enjoyed blue skies and warm sun at Ruffled Feathers Golf Club in Lemont for the Epilepsy Foundation of Greater Chicago’s tenth annual golf outing. This year, participants were once again “Teeing Off for Camp Blackhawk,” our week-long retreat for kids ages 6-18 with epilepsy (see our photo spread on pgs. 6 and 7). Thanks to the participants and sponsors of “Tee Off for Camp Blackhawk”—including our Presenting Sponsor, USG Corporation; and our Cart Sponsor, Lundbeck Inc.—the Foundation was able to raise close to $40,000 to support this very special cause. A huge “thank you” also goes out to our dear friends Jack and Manjula Pfingston, who held their own golf outing, “A Day for Zach,” in memory of their son, who passed away last summer. Their June 28 event drew over 100 participants and raised over $15,000 for Camp Blackhawk.

HOLLYWOOD ROCKS CHICAGO...AND CHICAGO LIVES TO ‘TALK ABOUT IT!’ Hollywood rocked Chicago on June 26 when the all-star “Band from TV” performed at the Vic Theatre for a one-night-only concert to benefit the Epilepsy Foundation of Greater Chicago. The celebrity supergroup features “Heroes” and “Love Bites” star Greg Grunberg, Hugh Laurie and Jesse Spencer from “House”, Jamie Denton from “Desperate Housewives,” Bob Guiney from “The Bachelor,” Adrian Pasdar from “Heroes,” and Scott Grimes from “E.R.” Over 1,000 people packed the Vic for a wild evening of great tunes and epilepsy awareness, helping to raise more than $60,000 for the Foundation. Highlights from the evening were too many to count, although Jesse Spencer’s high-energy balcony-climbing violin solo during the Who’s “Baba O’Riley” certainly made everyone’s top 10.

It should be understood, however, that a generic drug should not be thought of as inferior to the brand formulation. The same rigorous standards that oversee the manufacture of a brand drug are the same as with the gener-ics. While the FDA acknowledges the concern on behalf of many patients and physicians, it has not felt that sufficient reliable evidence has been presented to waver from their stance. However, the FDA has conceded that more research is warranted to help resolve this debate. Regardless, most experts agree that the majority of patients can successfully be switched from a brand version of a drug to the generic equivalent as well as switched from one generic to another. On the other hand, there may be a possibility that a minority of patients can experi-ence either exacerbation of seizures or increased toxicity (due to higher plasma level). Although it is not possible to predict who exactly might be impacted, the physician can order a level of any of the medications while on a branded ver-sion and compare to the level while on the generic version. This, however, may not be a reliable indicator of levels over time and would not reflect substitution of one generic to another that can happen month to month. In the meantime, what should people who are prescribed a seizure medication do? The first thing is to review the prescription with the neurologist. Ask if you are being prescribed the brand name drug or generic. If the generic, ask the neurologist if he or she believes that it will be just as protective as the brand version. If so, ask the physician to write on the prescription, “Ensure

same manufacturer monthly.” Most pharmacies can obtain the generic drug from the same manufacturer monthly if requested. It is not important which manufacturer as long as it is the same month to month. How do you know the name of the company that makes the drug? The label on the bottle should note the name of the company. As such, when a refill is obtained, check to see that the maker is the same. Additionally, you can note if the pill or capsule looks the same (liquids may be difficult to distinguish if the color or taste is the same). These measures should eliminate any significant variation in bioequivalence due to a generic. On the other hand, if your physician indicates brand name only, then again check the label on the bottle to see if the brand name of the drug is noted. Any discrepancy should be brought to the attention of the phar-macist and prescribing physician. In an effort to gather information, people with epilepsy and their physi-cians should report any exacerbation of seizures that might be related to switching formulations to the FDA’s MedWatch program. For information, call 1-800-FDA-1088 or visit the web site at http://www.fda.gov/medwatch.

Roy Sucholeiki, MD, is Medical Director of the Comprehensive Epilepsy Center at Central DuPage Hospital and a member of the Epilepsy Foundation of Greater Chicago’s Professional Advisory Board.

Interested in learning more about the medication ‘switching’ issue? Join Andres Kanner, MD and Debbie Flader for “Brand vs. Generic AEDs: What to Do When You Can’t Afford Your Prescription,” a free education program on Thursday, Nov. 11, 2010

at Alexian Brothers Medical Center, 800 Biesterfield Rd. in Elk Grove Village. Call Tracy at 312-939-8622 x224 to register.

Join us for Chicago’s AnnualEpilepsy Consumer Conference

Visit epilepsychicago.org for the complete agenda.To register, call Tracy Schultz at 312-939-8622 x224.

Holiday Inn Mart Plaza • 350 W. Mart Center Drive, ChicagoSaturday, November 13, 2010

Individuals with epilepsy, their families, and the community are invited to participate in Chicago’s LARGEST epilepsy consumer conference. Join us as we explore the state of

epilepsy treatment, support, and research in the 21st century: Topics to be addressed include:

Refractory Epilepsy and Alternative Treatment Options Women and Epilepsy • SUDEP • New Technologies

Dual Diagnosis in Children and Adults All offered FREE of charge!

11

ConnectionsEpilepsy

A publicAtion of thE EpilEpsy foundAtion of GrEAtEr chicAGo

Autumn 2010

www.epilepsychicago.org

Epilepsy changes everything. ...Or does it?

THE DATING GAME

non-profit organization

u.s. postage

PAIDpermit no. 111

chicago, ilEpilepsy foundation of Greater chicago17 n. state street, suite 1300chicago, il 60602

BECAUSE It’s Time To Tell Your Story.What are you doing for dinner on saturday, november 6th?

We’ll provide you with everything you need, including an invitation template and a short dVd you can show at your party. Call Erin at 312-939-8622, x208

or visit www.epilepsychicago.org to get started!

1) save the date: November 6, 2010* 2) invite your friends to dinner 3) have fun, ask your friends for their support...and talk about epilepsy!

host your own Epilepsy Awareness fundraiser!

help raise awareness of epilepsy while raising money to support the mission and programs of the Epilepsy foundation of Greater chicago.

Talk About It! @ Dinner...

It’s as Easy as 1...2...3!

(*We know that everyone’s schedule is different, and that not all of you will be able to have your dinner on the 6th. that’s oK! the important thing is that you get together with your friends,

tell your story in whatever way works best for you, let them know why you support the work of the Epilepsy foundation of Greater chicago, and encourage them to do the same.)

Epilepsy and Health Care Reform

Risks and Realities of Medication Switching

Merger Strengthens

Area Epilepsy Services