Summer 2004Volume 13

Contents

faces Updates ..................... 2

Announcements ................. 3

Research ............................ 4

Epilepsy Surgery and theWada Test ........................ 5

Medication Update ............ 6

faces of the Forest .............. 6

Chores for Charity ............. 6

Donations ........................... 7

Behavioral Issues andEpilepsy .......................... 8

Are Seizures Bad for theBrain ............................... 9

Anita Kaufman ................ 10

Kashaun’s Story ............... 11

Upcoming Events ............ 12

NYU ContactInformation ................... 12

If someone says, “jump” it is not in mycharacter to ask “how high?” Thus, when Dr.Devinsky suggested that I consider brain surgeryI did not ask “when?” but rather “why?” Surely,I thought, there would be a drug on the marketthat could control my seizures. However, I wasbecoming very frustrated with my Anti EpilepsyDrug (AED) therapy program. I was still havingat least three generalized seizures monthly, alongwith a lot of partial seizures. My daily routineconsisted of taking a cocktail of drugs withdisastrous results. Either the drugs controlled the seizures with horrendous side effects,or the side effects were tolerable, but the seizures were not controlled.

Dr. Devinsky recommended surgery at every visit. What finally convinced me topursue the surgery was seeing his frustration at the inability of the drugs to control myseizures. It was evident that I had to seriously consider surgery to improve my qualityof life. I did research throughout the process on the pre-surgical procedures, and thesurgery itself, which kept me sane. I developed an interest in general health issuesbecause of the research I conducted before my surgery.

I survived the surgery and the doctors were confident that they had removed thesource of my seizures and disconnected the problematic areas that they could notremove. The real test came the day after surgery. Dr. Devinsky asked me to lift up myarms, and I did. He and the other doctors were ecstatic (and so was I)!

I was seizure free after the surgery, and I worked tirelessly to obtain my driver’slicense. My joy was short lived. Within a short time, I totaled my car. Although theaccident was not directly related to a seizure, Dr. Devinsky suggested that I stop driv-ing. I was devastated at the loss of my newfound independence, and fought “tooth andnail” to keep my license. However, I realized that it was not safe for me to drive, Ireluctantly returned my license, and I relocated to a city with a good mass transitsystem. I moved to New York and secured a job with The New York City HumanResources Administration (HRA).

Today, one medication controls my epilepsy. I have not had any major seizuressince the surgery, and only experience very small jerks and weird feelings on my rightside. Having epilepsy has not deterred me from living a full, productive life. I amgrateful that I have a superb medical team monitoring my condition, an interesting job,a comfortable place to live and a means of transportation that safely maintains myindependence.

Having epilepsy helped me realize that I want to help other people, so I decided topursue a Master’s Degree in Public Health. Improving the healthcare system is adaunting task, but with my determination and life experience, I think I am ready to facethe challenge!

Special thank you to volunteer Sylvia Rothbein for her help on this story.

Liz’s StoryBy Elizabeth Harwick

The mission of faces is to improve the quality of life for all people affected by epilepsythrough research, education and awareness, and community-building events.

The faces newsletter is edited byChristine Toes andMelissa Murphy

with support fromDaniel Miles, M.D. andRuben Kuzniecky, M.D.

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Steering Committee

ChairOrrin Devinsky, M.D.

Program CoordinatorChristine A. Toes

Program AssistantMelissa Murphy

Lisa AltimariJeff Benowitz

Brendan BurneLarry Davis and Donna Emma

Judy EbnerHarry Falk

Anna FantaciJane Gilbrt

Peter and Kathy GogolakElizabeth Jarvis

Lynn and Noel JeffreyLisa Krebs Borgen

Ruben Kuzniecky, M.D.Warren and Kathy LammertLeonard and Marilyn Lehrer

Randi and Jeff LevineI.D. LuckowerLeila Mansouri

Karen MayersonMary Miceli, RN

Daniel Miles, M.D.Elizabeth MillsteinNancy Novograd

Lawrence and Gaye PeckerSharon PerhacJaimee Sabato

Mame Kennedy SchragerRichard Shane

Remi SilvermanLeslie Smith

Stevie SolomonCandice Stark

Amy Steinman CohenDavid Swinghamer

Blanca Vazquez, M.D.Leah and Michael Weisberg

Neil and Stacey WeissRichard Wheeless

Donations to faces support epilepsyresearch and programs for childrenand teenagers affected by epilepsy.All donations are tax-deductible.

Please e-mail your questions aboutfaces to

facescoordinator@yahoo.com.

faces Update

faces

The Finding A Cure for Epilepsy and Seizures (faces) gala, held Monday,March 1, 2004 at the New York Hilton Hotel, raised just under $2 Million forepilepsy, clinical and basic science research, education, and patient programs.Dateline NBC’s Stone Phillips was our emcee. A record crowd of nearly 1,200faces supporters attended the event. Honorary Chairperson Julianne Mooredonated silent auction items from her personal collection to the event’s 500-itemsilent auction, and Sotheby’s Vice President, Hugh Hildesley, hosted a spectacu-lar live auction, which included a 1959 Alpha Romeo Spider convertible, a walkon role on Law and Order, and an autographed Bon Jovi Guitar. Special thanksto everyone who made this night such a success!

Leah and Michael Weisberg Nancy NovogradGala Chairs Auction Chair

Save the Dates!Faces will be hosting an event at RexPlex (www.RexPlex.com) in New Jersey

on Saturday, September 18th. For more information and to register, please go towww.faces.kintera.org/RexPlex.

Art Dayfor Children and Teens with Epilepsy

will be held on Sunday, October 24th

at the Children’s Museum of the Arts in SoHo (http://www.cmany.org/).This fun event will feature great art projects just in time for

Halloween, face painters, and much more!If you are an artist and would like to volunteer your time to this event,

please contact nyufaces@yahoo.com.

Golf ClassicThe Third Annual

Bentley Long IslandGolf Classic was heldon Monday, June 28,2004 at Pine HollowCountry Club. Specialthanks to Bentley fordonating the proceedsfrom the event to faces!

Yankees, Mets, andLiberty Games

Faces would like to thank theNew York Yankees, Exceptional

Parent Magazine, Howard Cowan,the New York Mets, and the NewYork Liberty for donating game

tickets for our summer events forfamilies affected by epilepsy.

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Announcements

Sign Up!

Faces has started emailing out event updates.Don’t miss out on upcoming events! Send an

email with your name, e-mail address, andphone number to

facescoordinator@yahoo.com to be added toour email database. The faces newsletter will

soon be available via email, enabling us todedicate less funding to printing and mailingexpenses and more funding to epilepsy re-

search and programs.

To the Editor

On Sunday, June 6th, 2004, I had the pleasureof presenting “Epilepsy & NaturopathicMedicine” at the faces parents’ support group. Itwas very gratifying for me to share informationwith the parents who attended because I am soimpressed with how motivated they are to find acure for their children.

For those of you who were not able to attend, Iwould love to hear about your experiences aboutepilepsy, specifically about any lab tests that havebeen useful to you, and whether you (or yourchild) have been tested for cyclic-AMP?

I would like to do research into finding a curefor epilepsy using natural therapies and I needyour help in order to confirm what further workneeds to be done. Please e-mail me atdrnora@rogers.com and we can begin from there.

Sincerely,Nora Jane Pope, N.D.

Editor’s Note: Dr. Pope’s presentation slides canbe downloaded at www.nyufaces.org. Specialthanks to Sheila and Bill Lambert for hosting theParent’s group!

Epilepsy ActionLooking for more information about epi-

lepsy? Check out epilepsy information fromthe U.K. at http://www.epilepsy.org.uk.Sign up for Epilepsy Action and receive

great email updates about epilepsy researchand other epilepsy news.

www.Epilepsy.comEpilepsy.com has launched a communityforum for those interested in sharing their

experiences and learning more aboutepilepsy. The forum provides a virtualsupport network for those living with

epilepsy and their loved ones. Discussiontopics range from seizure control to caring

for a child with epilepsy to employmentissues. Participants are welcome to

contribute to an ongoing discussion or tostart a new topic for discussion.

EpilepsytalkEpilpesytalk is a new Listserv now availableglobally to anyone interested in communi-

cating about pediatric epilepsy. PACE (Par-ents Against Childhood Epilepsy) has under-written this discussion group for the benefit

of families who wish to share comments,concerns and questions regarding their expe-rience with children afflicted with epilepsy

and or other related issues.For more information, send an email to

epilepsytalk@aol.com.

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Preliminary results from the neurofeedbackstudy will be available at the end of the summer.

RESEARCH

Please email your questions about any of the following studies underway at NYU to epilepsyresearch@med.nyu.edu.

Psychoeducational Treatment of PsychologicalNon-epileptic Seizures

Investigators: William Barr, Ph.D., Charles Zaroff, Ph.D.Psychological non-epileptic seizures are seizures result-ing from emotional stress and not epilepsy. The purposeof this study is to determine if educational techniquesused in group psychotherapy can reduce psychologicalnon-epileptic seizures and psychiatric symptoms andimprove coping strategies.

New Location!The NYU Comprehensive Epilepsy Center will be

opening a new location on 39th Street and2nd Avenue with a Sleep Center and MEG unit!

Stay tuned for more information!

Dr. Nandor Ludvig has been recruited to NYU towork on a neuroprosthesis device that would

send anti-epileptic medication directly to the brainupon abnormal neurobiological signals. The aim ofthe device, which is currently in the animal testingphase, is to send medication to the specific area ofthe brain where the seizure is originating – seconds

before a seizure would begin. The device wouldhelp to control seizures that are resistant to other

therapies, and would greatly reduce medication sideeffects by affecting only a part of the brain, and by

bypassing the liver.

Herbs: Did You Know?

The NYU Medical Center Food and Nutrition Service lists Goldenseal, one of the 12 mostcommonly used herbs, as being a potential cause of seizures. Always consult your physicianbefore using any herbal remedies!

Faces is working on a Radio Public Service Announcement (PSA) to educate people about epilepsy.Do you know someone in radio

who might be able to help get this aired on their station?

Know anyone in Marketing or PR?Faces is looking for companies who are willing to do pro-bono work

on print Public Service Announcements to educate the public about epilepsy.We are also looking for publications willing to run these ads.

If you might be able to help out on this project, please contact Christine atfacescoordinator@yahoo.com or at 212.779.2041.

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EPILEPSY SURGERY AND THE WADA TESTBy Daniel Miles, M.D.

First performed in 1949 by Dr. Juhn Wada, the WadaTest, also known as the Intracarotid Amobarbital Proce-dure (IAP), was used in patients with refractory epilepsybeing considered for epilepsy surgery to determine inwhich hemisphere the patient’s language was located.Tests of memory have been added to the study since Dr.Wada’s initial use of the procedure. Lateralization oflanguage and assessment of a patient’s memory functionin each hemisphere permit a tailoring of the surgicalprocedure to minimize language and memory dysfunc-tion after surgery.

The Wada test lateralizes language dominance andassesses memory by inactivat-ing or putting one hemisphereto sleep so that the languageand memory functions of theopposite hemisphere can betested. Inactivation of onehalf of the brain is achievedby injection of a short actingbarbiturate, Amobarbital, oroccasionally another medica-tion with similar effect, intothe carotid artery, the mainartery serving each hemi-sphere of the brain. Theinjection of the medication isundertaken only after anangiogram of the brain hasbeen completed. An angio-gram reveals the anatomy ofthe brain’s blood vessels,mapping the flow of bloodthrough each hemisphere.This information is important because some individualsmay have variations in blood flow that result in theinjected medication entering the opposite half of thebrain. This would have profound impact on interpreta-tion of the results of the study, perhaps even leading to anincorrect lateralization of language.

Variations of how the Wada test is done can be foundfrom one center to the next. These differences mayinclude the dose of medication used, and the specificmanner in which language and memory are tested. In

general, the patient is prepared by pretest practice so he/she is familiar with what will take place during the test.Once the angiogram has been completed and the brain’sbloodflow patterns demonstrated, the patient is asked tocount and either hold their arms up in the air or squeezean object while the injection is given. The onset of themedication effect is determined by the moment at whichthe patient becomes weak on the side opposite of theinjection, and/or stops counting (the latter if the languagedominant hemisphere has been injected). The patient’slanguage is then tested by asking them to name objectsand to obey commands. Memory is assessed by the

patient’s ability to recall itemspreviously shown, and realizethat certain items were notpreviously shown. Formationof new memories may also beevaluated.

Determination of whichhemisphere supports language,and the degree to which eachhemisphere maintains memorypermits tailoring of a surgicalresection of seizure generatingbrain tissue. A focus ofseizure activity in a non-dominant hemisphere in anindividual with intact memoryin the opposite hemispherepermits a more aggressive orwider resection of tissue thanmight be achieved if theseizure focus were in thedominant hemisphere that

supports language, or if memory in the opposite hemi-sphere is limited.

The Wada test is done in those situations that theorigin of seizure activity is believed to arise from an areaclose to centers of language and memory in the frontaland temporal lobes. The test aids in maximizing thechance of complete seizure control and minimizing post-operative dysfunction. It is an integral part of epilepsysurgery evaluation.

“The WADA test aidsin maximizing the

chance of completeseizure control andminimizing post-

operativedysfunction.”

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MEDICATION UPDATEBy Kim Parker, RN

The Federal Drug Administration (FDA) and the Drug Enforcement Agency (DEA) have authorized a New YorkCity pharmacy to import and dispense clobazam (Frisium) and vigabatrin (Sabril) to patients with a valid prescrip-tion and letter of medical necessity from a prescribing physician. US customs is exercising increased scrutiny whenexamining packages from overseas such as those from pharmacies in the Bahamas and Switzerland. This couldpotentially cause delays or confiscation of medication shipped from overseas. Therefore, patients are advised to usethis pharmacy to obtain these medications.

If you wish to receive your medications from this pharmacy, please contact your physician so that he or she canprovide the pharmacist with a valid prescription and a letter of medical necessity. The pharmacist will then contactyou to arrange for billing and shipment. You will need to provide the pharmacist with your credit card information.All medications must be mailed directly to your physician’s office, where you can pick them up or arrange forshipment to your home.

For information regarding cost per pill and shipping fees, please contact the pharmacy directly:Caligor Pharmacy(212) 369-6000Supervising pharmacist: Gary

The Brunswick Upper School in Greenwich, CT, conducteda presentation to educate Brunswick Middle School studentsabout seizures and epilepsy. Special thanks to the students fortheir hard work on the presentation and to the Middle and UpperSchool students who raised over $2,100 for faces through a bakesale and “dress down” day! Thanks also to Leslie Andersen,Head of Student Services, for her work on the project.

Chores-For-Charity: A Community Service Program for StudentsIf you are a teen and your life has been touched by epilepsy, Chores-For-Charity empowers you to make a

special contribution to Finding A Cure For Epilepsy and Seizures. You can earn community service hours andeven leadership acknowledgement if you bring the program to your school. For more information, please visitwww.ChoresForCharity.com.

School Raises Over $2,000 for Epilepsy

The “faces of the Forest” mural project was done in conjunctionwith art therapy students at the School of Visual Arts. It will go ondisplay at the new Epilepsy Center location on 39th street and 2nd

Avenue in early Fall.

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D O N A T I O N SSpecial thanks to our supporters!(November 19, 2003 - June 17, 2004)

Although every donation to faces is important, we regret that in orderto keep our newsletter costs to a minimum,

we can only acknowledge donations of $200 or more.

Some corporations will match your donation!Check with your company to see if your contribution to faces can be matched.

General Donations$500,000+The Epilepsy Project

$20,000+CIBC World MarketsJames T. LeeAlice Pollner

$5,000+Dr. Orrin and Deborah DevinskyHoward and Sylvia RothbeinPfizer, Inc

$4,000+United Way of the Tri-State, Inc.

$2,000+Ruth Abrams FoundationERS Charitable Foundation,

In honor of Emmory Shapses

$1,000+Cory CarlesimoCar Program LLCGeraldine E. MardenStone PhillipsJoe and Jill SkornickaPhillip and Leslie SmithHoward and Michelle Swarzman

$500+Ellsworth and Patricia BrownSuzanne DavisDreyfusLandfill Technologies CorporationMannkraftMichael and Kristina Niemeyer,

On behalf of their daughter LaurenMarc and Cathy Solomon,

In honor of Sylvia Rothbein andFamily

$300+Michelle McDonoughIlana Rothbein,

www.ChoresForCharity.comMartin and Jane Schwartz,

In honor of Vanessa Cortesi andJonathan Taufman

Joshua Shuchatowitz,To Drs. Devinsky, Alper andNajjar- “You are the Best!”

Cathy Solomon

$200+Irving CantorMary Henderson,

With heartfelt gratitude to Drs.Weiner and Devinsky

Dr. Eugene and Breena KaplanScott and Liane StultsJames Wylie FieldsJohn and Donna TompkinsDr. Meir Malmazada

In honor of Rita Arnold’sBirthdayLinda and Dan AbramsBarbara and Jay ChaskinMarsha and Irving CohenMarilyn CohenHoward CoopermanLisa and Vincent DisimoneCarrie and Bill EpterJane and James FasslerBarbara GordonMarcia and Harvey JacobsonCarolyn and Steve KassJill KleinJoan KoffZeldie and Milt LinialCarol and Chuck LipskyAnnie and Murray LowenthalLinda and Richard MelnikoffBarbara and Larry NewmanStephanie and David PortmanSeena PuroWinn RosenblattAbe and Judy SeltzerMollie and Jerry SernallLila and Harry WeinerLinda Wolfson

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BEHAVIORAL ISSUES AND EPILEPSYBy Nidia Ortiz, RN, PNP

Many children with epilepsy also have behavioral issues, and parentsoften ask whether these issues are caused by the epilepsy or by themedications. Unfortunately, there is no simple answer. Behavioral issuescan be caused by many factors, such as frequent seizures, large doses of AntiEpileptic Drugs (AEDs), brain abnormalities like scar tissue, and the child’sown anxiety or self-esteem issues. If parents don’t allow the child toexercise their independence, the child may become frustrated and act out.

Behavioral side effects are often dose-related, which means that as youincrease the dose of the medication, you may increase the behavioral effectsof the medication. The effects are different for each child, but the moremedications the child is on, the greater the chances that they will experiencebehavioral side effects.

The most common culprits of behavioral side effects are Barbituates, likePhenobarbital and Primidone, and Benzodiazapines, like Ativan, Klonopan,Frisium, and Valium. These medications are not recommended for long-termuse, because they become less effective over time, which causes physiciansto keep increasing the dose of the medication. Some of the behavioral side-effects you might see from these medications include hyperactivity, irritability,difficulty with attention span, memory, sleep problems, and mood changesincluding depression, slower thinking and movement, decreased motivation,and memory lapses.

It is important that parents know that physicians look at what types ofseizures the child has to help determine the best medication for that child.They also consider the drug’s cost, how often it has to be taken, and how itwill interact with other medications that the patient is taking. Physicians tryto balance the seizures and medication side effects with the child’s quality oflife. Sometimes parents don’t realize how badly the medications are affectingtheir child until the child is taken off the medication.

As a parent, you can help your physician determine the best medicationfor your child by keeping a log or journal of your child’s medications and theside effects they are experiencing. Try to get as much information as possiblefrom your child’s teacher about what side effects the teacher notices in theclassroom. At your next visit, you will be better equipped to explain to yourneurologist what side effects your child is experiencing. The physician maychange the medication schedule by spreading the medication out in smallerdoses over the course of the day, or by giving the medication after or with ameal. If the seizures are happening at night or first thing in the morning, thephysician might prescribe a higher dose of medications at bedtime.

When beginning a new medication, it’s often better to start with a lowerdose and then increase the dose as the child builds up their tolerance to themedication and its side effects. If the child is having significant behavioralissues, the child could also be experiencing symptoms of depression. Thedepression may need to be treated with medication, counseling or therapy,which may help with the behavioral issues the child might be facing.

To learn more about medications and their behavioral side effects, pleasesee the sidebar, or ask your physician or nurse for more information.

Some of the most commonepilepsy medications and theirbehavioral side effects are:

Zarontin – (used to treat absenceseizures) behavioral changes,tiredness and dizziness

Neurontin – irritability, hyperactivityKeppra - irritability—usually with

rapid dose increase, sometimes youhave to wait until the child builds upa tolerance to it

Gabitril - concentration, irritability, butmay have a positive effect on mood

Topamax – concentration and attentionproblems, slowing of thought process,word recall problems, memoryproblems, mood (nervousness,depression or irritability)

Depakote - irritability, reduction inattention, speed of thinking

Sabril - usually used with TuberousSclerosis and infantile spasms. Cancause irritability and depression (canalso cause peripheral vision problems)

Phenobarbital - can cause hyperactivityin children, irritability (Phenobarbitalstays in the body a long time, so it isoften used for infants)

Benzodiazapines – irritability, drooling,hyperactivity, impaired attention/memory, aggression, depression,also very sedating

Tegretol – not as bad as far as the sideeffects of other medications. Mayhave positive effects on behavior.

Trileptal – a few cognitive side effectsFelbatol – mild cognitive and behavioral

side effectsDilantin – mild or infrequent cognitive

and behavioral side effectsLamictal – can be positive for mood,

but you have to increase dose veryslowly to avoid life-threatening rash

Peganone – derivative of Dilantin,some patients see fewer side effectson this than Dilantin, but it’s notused very often

Zonegran – can cause sedation,especially if you increase it rapidly

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Medically refractory partial seizures arecharacterized by cell loss and gliosis (scar cells) withconsequences for nerve cell reorganization, excitability,memory and cognitive functions. Several studies providesolid evidence for long-term alterations of neuronalexcitability and cognitive capacity associated withrepeated seizures during development. The data raiseconcerns about the long-term cognitive consequences ofrepetitive seizures, especially in, but not limited to,developing brains.

Some epilepsy types are more specifically associatedwith such nerve cell reorganization, and morepronounced nerve cell loss such as mesial temporal lobeepilepsies (MTEs). A radiological and pathologicalsignature of MTE, hippocampal sclerosis is the primeexample of how repeatedseizures induce neuronalreorganization and nerve cellloss. Hippocampal sclerosisis often associated withrefractory seizures that resultin memory impairment.Interestingly, a fullydeveloped hippocampalsclerosis is infrequentlyobserved following even asingle prolonged febrileseizure, which might suggestthe presence of a preexistingvulnerability for thiscondition. Other recent studiesshow definitive evidence oflong term effects of even briefbut repetitive febrile seizures(FS) on memory during earlybrain development in rats. Absence seizures (alsoknown as petit mal seizures), are not considered harmfulto nerve cells since these seizures do not producemassive excitation of the neurons.

It is worth noting that recurrent seizures in refractoryepilepsies may result in various personality changes andother psychopathological conditions (20%- 50%). Thesechanges are more often encountered in temporal lobeepilepsies. The temporal lobes contain vital limbicsystem structures (hippocampus and amygdala) that are

ARE SEIZURES BAD FOR THE BRAIN?By Souhel Najjar, M.D.

closely involved in emotional behavior. Repeatedseizures in refractory partial epilepsies can causepathological changes that affect these structures, whichcan result in personality disorders, affective disorders(depression 18%, anxiety 20%, fear, paroxysmalirritability 30%, and euphoric moods), and evenpsychosis (8-10%). The strongest risk factors forpsychosis in epilepsy are those that indicate severity ofepilepsy, including long duration of active epilepsy,multiple seizure types, and poor response to drugtreatment.

Mechanisms mediating the harmful effectsof repeated seizures

Excessive nerve cell excitation due to potentiation ofN-methyl-D-aspartate (NMDA) receptors (excitatory

receptors), appears to be themain culprit that irreversiblydamages nerve cells.Numerous studies show thatNMDA receptors play aprominent role in theneuropathology and thepathogenesis of epilepsy.Several studies show thatNMDA provoked seizures,induced early in the developingrat brain, are followed withsubsequent deficits in spatiallearning and an increasedsusceptibility to seizures inadulthood. Furthermore, theactivation of intrinsicinflammatory cells (so-calledmicroglial cells), the

production of inflammatory/toxic molecules (so-calledcytokines) by these cells, the breakdown of the blood-brain barrier, and calcium dysregulation, are well-documented abnormalities in epileptic tissue, and mayplay a role in nerve cell injury.

The above data suggest that early effective medical,and at times surgical, treatment for refractory epilepsy isessential to limit potential irreversible nerve cell injury,and its related progressive neurological, cognitive, andneuropsychiatric effects caused by repeated seizures.

“It is worth noting thatrecurrent seizures inrefractory epilepsiesmay result in variouspersonality changes

and otherpsychopathological

conditions (20%-50%).”

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Anita Kaufmann had epilepsy but it didn’t stop her from having a suc-cessful career as a lawyer and owner of one of the top legal recruiting firmsin NYC. Several experiences in which she had seizures and people reactednegatively to her taught her how terrible the stigma faced by people withepilepsy could be.

Anita passed away on November 26, 2003. She left her estate to TheAnita Kaufmann Foundation whose mission is to educate the public aboutepilepsy in order to obtain acceptance of people with epilepsy by society.

Anita’s childhood friend, Debbie Josephs, is administering the Founda-tion, and has teamed with faces to present the scholarship contest below. Formore information about the Foundation and the contest, please visitwww.theanitakaufmannfoundation.org.

The Anita Kaufmann Foundation andfaces (Finding A Cure for Epilepsy and Seizures)

present

A Scholarship Contest forHigh School Juniors and Seniors

One 1st Prize $5,000One 2nd Prize $3,000One 3rd Prize $1,000Four 4th Prizes $500

Subject: How to Teach High School Students Not to Fear Epilepsy

Guidelines: Create a 250-500 word essay, poster, play, song, poem, script for a school assembly, publicservice announcement, documentary video, educational seminar, feature article, website oranother way to teach high school students about seizures and how not to fear epilepsy. Pointswill be awarded for effectiveness, practicality, originality, and feasibility of your project. NoGPA requirements. No SAT requirements.

Deadline: December 31, 2004

Entries become the property of the contest sponsors and may be used in a curriculum to teach studentsabout epilepsy. Winners will be notified by April 15, 2005.

Please send submissions to: NYU-faces (Contest)11 E. 32nd Street, Basement OfficeNew York, NY 10016

Anita Kaufman Foundation Strives to EducatePublic About Epilepsy

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My name is Ernette Barnes and I am thesingle mother of three children. My nine-year-old son, Kashaun, was diagnosed with LennoxGasteau Syndrome as a result of the varyingtypes of seizures he has experienced.

My mother cares for my children while Iwork. She was the first to notice prolongedstaring and believed Kashaun was having sei-zures. I scheduled an appointment with mypediatrician who said that my son was simply“ignoring me.” I knew that was not the case andsought a second opinion from an MD who gaveKashaun breathing exercises to induce his “star-ing episodes.” As a result, she referred me to aneurologist who administered an EEG. Whilethe result of the test was normal, it was at thistime that we found out he was having petit-malseizures. He was prescribed Zarontin liquid at first, then capsules. The neurologist explained that, in all likelihood,my son would grow out of his seizures. For two years, his seizures were controlled by the medication.

In 1999, while crossing the street, Kashaun’s arm went limp. By the time we made it to the sidewalk, he hadfallen to the ground. This was his first grand-mal seizure. I called 911 and my son was helped into a nearby store.His tremors had stopped, but he was non-responsive. He was taken to the nearest hospital and was stable for twohours, but then he suffered four grand-mal seizures in a row. An EEG revealed abnormal results and we addedDepakote sprinkles to his medications.

We lived through the many side effects of the medications. The Depakote left him dazed and drowsy. OnCelontin he started having drop attacks. Keppra gave him severe mood swings, so we took him off Keppra and puthim on Zonogran.

In response to the many side effects my son was experiencing, I started to research possible alternatives tomedication. We learned about the Vagas Nerve Stimulator (VNS) and found that my son was a good candidate. InJune, 2003, Kashaun had the surgery and his quality of life has improved immensely.

During the past year my son has enjoyed meeting other children with epilepsy through faces. It has truly been ablessing to meet other parents that are faced with the same issues as my family.

For more information on the Vagus Nerve Stimulator, go to www.vnstherapy.com.Special thanks to Liz Jarvis for her help on this story.

KASHAUN’S STORYBy his mom, Ernette Barnes

Latuan, Kashaun and Ernette Barnes.

Save the Date!Faces is hosting an event at RexPlex in New Jersey

on Saturday, September 18th, from 11am until 3 pm.The event will include great food, an obstacle course, bumper cars, video games, deck hockey, facepainters, and much more! For more information and to register, please visit www.faces.kintera.org/

RexPlex or go to www.RexPlex.com to learn more about what this great venue has to offer!

11 East 32nd Street, Basement Office • New York, NY 10016212.779.2080 or 2041

Upcoming faces Events

Saturday, September 18Game Day at RexPlex (NJ)www.faces.kintera.org/RexPlex

Saturday, October 16Epilepsy Conference at NYU

www.faces.kintera.org/Fall04

Sunday, October 24Art Day for Kids & Teens

at the Children’s Museum of the Arts in SoHo

NYU Comprehensive Epilepsy Center

403 East 34th Street, 4th Floor212.263.8870 (phone) 212.263.8341 (fax)

Orrin Devinsky, M.D. 212.263.8871

Kenneth Alper, M.D. 212.263.8854

Werner Doyle, M.D. 212.263.8873

Ruben Kuzniecky, M.D. 212.263.8870

Josianne LaJoie, M.D. 212.263.8318

Daniel Luciano, M.D. 212.263.8853

Nandor Ludvig, M.D. 212.263.2168

Melissa Mendez, M.D. 212.263.8870

Daniel Miles, M.D. 212.263.8318

Souhel Najjar, M.D. 212.263.8872

Steven Pacia, M.D. 212.263.8875

Melanie Shulman, M.D. 212.263.8856

Anuradha Singh, M.D. 212.263.8311

Ravi Tikoo, M.D. 212.263.8318

Blanca Vazquez, M.D. 212.263.8876

Howard Weiner, M.D. 212.263.6419

William Barr, PhD 212.263.8317

Eric Browne, PhD 212.263.8859

Chris Morrisson, Ph.D. 212.263.8317

Roseanne Mercandetti, RN(Manager CEC) 212.263.8321

Barbara Clayton, RN 212.263.8871

Maria Hopkins, RN 212.263.8359

Mary Miceli, RN 212.263.8359

Charles Zaroff, PhD 212.263.8317

Kim Parker, RN 212.263.8871

Alyson Silverberg, RNNP 212.263.8873

Pat Traut, RN 212.263.8871

Peggy Guinnessey, CTRS 212.263.8782

John Figueroa, CSW 212.263.8871

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Melissa Murphy nyufaces@yahoo.com