Epilepsy and TRAUMATIC BRAIN INJURY by xumiaomaio


     Epilepsy                                        Spring 2011


   Epilepsy and
             FOR SOME RETURTHE
             SOLDIERS, ONCE R...
             FIGHTING IS OVE
             THE BATTLE BEGIN

                                             Aging’s Impact
                                                on Epilepsy

                                            Making Sense of
                                            Education Plans

    F O U N D AT I O N
                                                                                        EDUCATION PROGRAM LOOKS AT TBI,
                                                                                        OTHER EPILEPSY ISSUES FOR VETS
                                                                                              Over four dozen US military veterans, along with an equal

                                                                                        number of Veterans Administration staff members, took part in
                                                                                        “Operation Epilepsy,” a half-day educational session at the Jesse
                                                                                        Brown VA Center in Chicago, on February 23. Paul Rutecki, MD
                                                                                        (pictured at left), Director of the Veterans Association’s Northwest

                                                                                        Center of Excellence, addressed a variety of epilepsy-related top-
                                                                                        ics which specifically impact veterans, their families, and friends.
                                                                                              Special attention was paid to the issue of traumatic brain in-
                                                                                        jury (TBI), which affects a large number of veterans returning from
                                                                                        combat in Iraq and Afghanistan. Fifteen percent of all incidences of

                                                                                        TBI will lead to epilepsy, and an astounding 47% of veterans who
                                                                                        experience TBI in conjunction with a penetrating head wound will
                                                                                        develop epilepsy.
                                                                                              See our cover story (starting on pg. 6) for more on TBI and
                                                                                        epilepsy, along with an interview with Dr. Rutecki.

          Friends, supporters, and volunteers of Epilepsy Foundation of
     Greater Chicago helped turn the region purple in honor of “Purple
     Day,” the international epilepsy awareness initiative, which is recog-
     nized each year on March 26, Since the 26th fell on a Saturday this
     year, EFGC celebrated Purple Day on March 25 as well, engaging
     dozens of schools, businesses, and other organizations in our efforts.
     Volunteers braved the chilly late March temps to stand on street
     corners with epilepsy awareness canisters, while businesses such as
     Culver’s, Potbelly Sandwich Shops, and Jersey Mike’s Subs donated
     a percentage of profits to EFGC. The weekend culminated with “Stand
     Up for Epilepsy,” a comedy revue featuring WGN-TV’s Ana Belaval,
     radio host Steve Cochran, and comedienne Patti Vasquez. Thanks to
     everyone who helped make Purple Day (Weekend!) such a success!

                                                                              iLEGO TEAM USES TOY BLOCKS TO HELP
                                                                              BUILD THE FUTURE OF EPILEPSY CARE
                                                                                     On January 15, the iLEGO Team #4930 from Mount Prospect won
                                                                              the Illinois State - FIRST®LEGO®League (FLL) Championship. The team
                                                                              worked on a bio-medical project focusing on providing an early warning of
                                                                              epileptic seizures. Early detection of seizures can improve a patient’s qual-
                                                                              ity of life as well as prevent many seizure-related accidents. The iLEGO
                                                                              team researched how seizures start, and then researched various medical
                                                                              sensors. The team consulted with Dr. Marvin Rossi M.D., PhD, Neurologist
                                                                              at Rush Memorial Hospital, and Phil Gattone, President & CEO of the
                                                                              Epilepsy Foundation of Greater Chicago for guidance in creating a wear-
                                                                              able seizure detection device. The iLEGO team is currently creating a
                                                                              prototype that will be featured at the International World FIRST®LEGO®
                                                                              Championship on April 27-30 in St. Louis, MO. Team updates will be
                                                                              posted at www.SchoolStreetRobotics.org.

New Web Site Brings Increased Interactivity                                                                                                      EPILEPSY FOUNDATION
                                                                                                                                                 OF GREATER CHICAGO
       With the start of spring, the Epilepsy Foundation of Greater                                                                                     17 N. State Street, Suite 1300
Chicago launched a complete overhaul of its online presence. Our                                                                                             Chicago, IL 60602
                                                                                                                                                        312-939-8622 • 800-273-6027
new web site, offering increased functionality and opportunities for                                                                               TDD: 312-628-4770 • Fax: 312-939-0391
interactivity, made its online debut at the end of March.
       The focal point of the new front page is a photo cycle, high-
lighting four main feature stories, each of which links to further in-                                                                                      bOARd OF dIRECTORS
                                                                                                                                                       Michael T. Keenan, Chairman
formation. Other news stories of interest appear below the photos.                                                                                     Kurt W. Florian, Vice-Chairman
                                                                                                                                                      Hellee Johanson, Vice-Chairman
       Videos, such as our public service announcements and event                                                                                        Ed Maslak, Vice-Chairman
highlights can now be embedded directly on the front page for easy                                                                                    Andrea Murphy, Vice-Chairman
                                                                                                                                                         Steven P. Corda, Treasurer
access, as can links to our social media pages.                                                                                                           Dennis DeCaro, Secretary
       New features such as an online press room allow immediate                                                                                             Patrick Callaghan
access to past and current news releases from the Foundation,                                                                                                 Daniel A. Cotter
                                                                                                                                                                Scott E. Early
and an archive of back issues of Epilepsy Connections magazine                                                                                                  Brian J. Flynn
                                                                                                                                                             Sen. Dan Kotowski
is now always available. People are also now invited to share their                                                                                             Mike Lemon
photos and personal stories of living with epilepsy with other web                                                                                            Nichole Manning
                                                                                                                                                           Madelyn St. Marie Sei
site visitors.                                                                                                                                             Michael C. Smith, M.D.
       For the first time, individuals will be able to directly donate to                                                                                  Roxane DeVos Tyssen
                                                                                                                                                            Brian Wiedenhoeft
EFGC through a secure web interface directly on our site. All funds
donated via the site remain in the Greater Chicago area to support                                                                                    pROFESSIONAL AdvISORy bOARd
                                                                                                                                                      Michael C. Smith, M.D., Chairman
our local programs and services.
                                                                                        The new front page at www.epilepsychicago.org                       Jorge Asconapé, M.D.
       An online shop will allow visitors to order Epilepsy Founda-                                                                                      Antoneta Balabanov, M.D.
                                                                                                                                                               Gaston Baslet, M.D.
tion of Greater Chicago products such as shirts, mugs, and mouse                                                                                         Lawrence P. Bernstein, M.D.
pads, with all net proceeds coming directly to our affiliate.                                                                                                 Alma Bicknese, M.D.
                                                                                                                                                      angela M. Roiko, M.SW., L.C.S.W.
       The new site also features a comprehensive interactive cal-                                                                                        Prashanthi Boppana, M.D.
                                                                                                                                                            Richard W. Byrne, M.D.
endar. Visitors can view each month at a glance, and receive an                                                                                         Stephen R. Clingerman, Ph.D.
overview of all fundraisers, educational programs, support groups,                                                                                           John S. Ebersole, M.D.
                                                                                                                                                              Jim Fischer, Pharm.D.
and other community events. Details on each event are then just                                                                                            Elizabeth E. Gerard, M.D.
one click away.                                                                                                                                             Andres M. Kanner, M.D.
                                                                                                                                                          Sookyong Koh, M.D., Ph.D.
       The new site also has comprehensive epilepsy information for                                                                                       Michael H. Kohrman, M.D.
                                                                                                                                                            Marianne Larsen, M.D.
those seeking answers, along with details on all EFGC services.                                                                                            Michael P. Macken, M.D.
       We will continue to build and expand the new web site,                                                                                         Abdul-Hassein Mazin, M.D., M.P.H.
                                                                                                                                                          Douglas R. Nordli, Jr., M.D.
and we look forward to hearing your input. Drop us a line at                                                                                         Serge J.C. Pierre-Louis, M.D., M.P.H.
                                                                                                                                                            Ruzica Ristanovic, M.D.
info@epilepsychicago.org.                                                                       Epilepsy Connections back issue archive                   Joshua M. Rosenow, M.D.
                                                                                                                                                         Marvin A. Rossi, M.D., Ph.D.

A Little Effort Can Help a Lot: Ask These Folks!
                                                                                                                                                      Stephan U. Schuele, M.D., M.P.H.
                                                                                                                                                              Jean-Paul Spire, M.D.
                                                                                                                                                         David A. Stumpf, M.D., Ph.D.
                                                                                                                                                               Roy Sucholeiki, M.D.
                                                                                                                                                            James Tao, M.D., Ph.D.
                                                                                                                                                               Jeanne Toguri, R.N.
      All throughout the year, scores of individuals and families           Tickets are $150 per person, and                                                   Martha Weber, R.N.
develop creative “third party” events aimed at supporting our               are ALL INCLUSIVE—with stadium
local programs and services.                                                style seating, views of home plate                                                        STAFF
                                                                                                                                                 Philip M. Gattone, M.Ed., President & CEO
      Here are just a couple of the things our friends did over             and the scoreboard, open bar, and                                          Garett auriemma • Linda Brinker
the past few months:                                                        food. Call Jen at 847-560-0788                                                Staci Burton • Debbie Flader
                                                                                                                                                           Erin Leyden • Tracy Leyden
      Crystal Williams, a school nurse who has epilepsy, wrote              or email her at jenleyden@ymail.                                          Barbara Marcus • Lauren McTigue
her own story about living with epilepsy and the ways in which              com.                                                                    Morgan Murphy • Mary Jo Perlongo
                                                                                                                                                           Bob Powell • Tracy Schultz
she is now helping students with epilepsy and others in her                       Finally, our annual 5K Walk is                                       B.J. Shoemaker • Meredith Taylor
                                                                                                                                                                   Jose Valdez
community. By sharing her story with schools and churches                   coming up in May. This is a great time for you and your friends
and selling epilepsy awareness pins in November for National                to find local businesses who are willing to donate raffle items in
Epilepsy Awareness month, Crystal raised over $300 for the                  support of your team and to help you host a fundraising party
Epilepsy Foundation of Greater Chicago.                                     at a local establishment.                                                       EpILEpSy CONNECTIONS
                                                                                                                                                   is published by the Epilepsy Foundation
      That same month, west suburban resident Ben Stach                           From jewelry parties and make up parties, to video ar-         of Greater Chicago. All content contained
assembled a cadre of comedians and musicians for an eve-                    cade nights or pub trivia events—there are as many good ideas         in Epilepsy Connections is for information
                                                                                                                                                     purposes only. Do not make changes
ning extravaganza at Chord On Blues in St. Charles. His event               as there are amazing people willing to go the extra mile to turn         in your medication or lifestyle without
                                                                                                                                                           consulting your physician.
raised over $500.                                                           those ideas into something truly special for the Foundation. If
      But there’s more to come! Supporter Jennifer Leyden is                you have an idea for a third party fundraiser but don’t know
hosting a party to watch the Cubs take on the Piratesfrom the               where to begin, call our Development office at 312-939-8622.                  FINd US ON FACEbOOK
Wrigley View Rooftop, 1050 W. Waveland, on Sunday, May 29.                  Together, we’ll turn your idea into something special!
                                                                                                                                                           FOLLOW US ON TWITTER

                                                                                                                                                          ANd vISIT US ON THE WEb

         Your gift can be your legacy to people with epilepsy. Contact Erin                                                                                epilepsychicago.org

         Leyden at 312-939-8622, x208 to discuss planned giving options.
Epilepsy in the Classroom

                      Taking an

                            To School
                             Information compiled and edited by the
                             EFGC Case Management Team
                                   Every student deserves the opportunity to realize the maximum
                             benefit from his or her education. For a child with epilepsy who has
                             special needs, an Individualized Education Plan (IEP) provides a
                             structured approach to reaching this goal. As a parent with a child with
                             epilepsy, the process of developing an IEP may seem overwhelming
                             and difficult to understand at first, however, once completed it is an
                             invaluable asset, and we can help.
                                   An IEP is a process which produces a written description of the
                             optimal educational program of a child with special needs. All dis-
                             abled children are entitled to a free appropriate public education and
                             the child’s home school district must provide special education and
                             related services at no cost to the child or his or her parents.
                                   A student with epilepsy is eligible for an IEP if they are deemed
                             to have a “health related impairment” or “traumatic brain injury” (two
                             of the characteristics that a student needs to qualify) by a designated
                             IEP team. This team will consist of, but is not limited to, the parents,
                             the student when appropriate, a general education teacher, special
                             education teachers, a school social worker and a school psycholo-
                                   When it is decided that a student is eligible for special education
                             services, the team will convene to collaboratively develop the IEP. Us-
                             ing the assessment results, the team determines the least restrictive
                             placement for the student. The least restrictive placement is achieved
                             when the student receives his or her educational needs while be-
                             ing educated among peers without disabilities, in a general education
                             environment, and to the maximum extent possible. The appropriate
                             and most effective academic accommodations and services are also
                             determined at this point.
                                   In the context of epilepsy, Lynn Bennett Blackburn, author of
                             “Growing Up With Epilepsy,” contends that an appropriate IEP should
                             address the student’s specific seizure type, frequency, time of day
                             when seizures occur, anti-epileptic drugs, social history, family learn-
                             ing history, and the child’s current emotional status.

                                                                                 (continued on pg.11)

Epilepsy Answers
By Roy Sucholeiki, MD

Aging Process Can Impact Epilepsy In a Variety of Ways
Q: Should I be concerned about my epilepsy as I age?                                    treatment. These include benign neonatal convulsions, benign myoclonic epi-
A: This is a common question that is asked in my practice. Fortunately, many            lepsy, childhood epilepsy with occipital paroxysms, benign childhood epilepsy with
people with epilepsy will not encounter significant surprises specific to aging and     centrotemporal spikes, childhood absence epilepsy, juvenile myoclonic epilepsy,
their epilepsy. However, for some patients this is not the case and hence people        juvenile absence epilepsy and epilepsy with grand mal on awakening. However,
with epilepsy should receive appropriate counseling about this topic. Of course, the    many other generalized epilepsies carry a frustrating outcome with lifelong vari-
concerns regarding aging and epilepsy is highly dependent not only on the type or       able resistance to treatments. These include eyelid myoclonia with and without
cause of epilepsy but age of onset of seizures, gender, coexisting medical problems,    absences, perioral myoclonia with absences, some with myoclonic astatic epilepsy
other medications and psychosocial circumstances. These can all contribute to           and generalized epilepsy with febrile seizures plus (not to be confused with simple
marked differences in the experiences from person to person.                            febrile seizures).
      Surprisingly, there is not a lot of animal or human research data to draw from.          Unfortunately, in some of the symptomatic epilepsies, the prognosis is not
Regardless, there is an understanding that as our bodies change with age, so can        good and seizures can be resistant to treatment. These include Dravet syndrome,
an illness within that body. For all of us,                                                                                      Lennox-Gastaut syndrome, and progres-
when we are born, our brains are not fully                                                                                       sive myoclonic epilepsy. However, some of
matured. The physical maturation of the                                                                                          the symptomatic epilepsies can have mixed
brain is a process that takes a long time                                                                                        outcomes such as Rasmussen encepha-
and does not fully occur until approximately                                                                                     litis. Here treatment with immunotherapy
30 years of age. Puberty is a relatively                                                                                         may not be successful but surgery with
rapid phase of growth mediated in part                                                                                           a hemispherectomy can have a surpris-
by dramatic hormone changes. The brain                                                                                           ingly good outcome. Landau-kleffner syn-
changes less after age 30 until advanced                                                                                         drome can variably respond to treatment
age, that varies from person to person. As                                                                                       but regardless, the EEG abnormalities can
such, epilepsy being a disorder of neurons                                                                                       resolve as the child gets older but be left
and their connections can be affected by                                                                                         with some degree of language impairment.
these changes. First, I will briefly review the                                                                                       Overall, it is said that approximately 50%
prognosis of some specific epilepsy syn-                                                                                         of children with epilepsy will out-grow it by
dromes that begin in infancy and childhood                                                                                       young adulthood. However, this obviously
and then I will review issues in relation                                                                                        means that 50% will not. It is in this 50%
to aging in general. The information here                                                                                        that the concerns about aging is shared
serves to provide a perspective and brief                                                                                        with those whose epilepsy begins after
overview of the concept of prognosis as                                                                                          youth. For most people, the best predictor
function of age (and treatment). However,                                                                                        of the future of their epilepsy is the past.
individual experiences can vary dramati-                                                                                         If one is predicting from a standpoint of a
cally. As always, patients and families                                                                                          young adult, then there is not much past to
should strive for an expert assessment                                                                                           draw from. But, if the epilepsy has remained
with a neurologist highly experienced in                                                                                         under control for a significant period of
epilepsy.                                                                                                                        time (years), then it would be expected to
      Aging is a critical factor for epilepsies                                                                                  continue to remain so. I do caution all my
that begin in infancy and childhood as                                                                                           patients who have seizures that have been
would be expected. Identifying the pres-                                                                                         under control to understand that medication
ence of a defined epilepsy syndrome will                                                                                         efficacy is not all or none. Rather, medica-
not only allow some prediction concern-                                                                                          tions have a continuum of effect that only
ing the seizures over time but also the                                                                                          time can clarify. This means that when a
response to treatment that can be expect-                                                                                        treatment is begun, it will not be known if
ed. The question of age remains relevant                                                                                         completely effective for a very long time;
so long as a person has to contend with                                                                                          perhaps years. Some people can experi-
the specter of seizures and has not either experienced a spontaneous remission          ence a breakthrough seizure after years of control. Assuming that the level of the
or been cured. In this case, the seizure disorder itself can be affected by the aging   drug has been stable, this would suggest the efficacy of the treatment is not 100%
process that includes acquired comorbidities and other medications that may be          but slightly less. Hence, epilepsy can be thought of as a chronic disorder that, like
prescribed.                                                                             many other medical problems, require dosage adjustments or a change in a drug.
      The prognosis of some of the so called idiopathic epilepsy syndromes that                For both men and women, aging affects a number of factors that impact
begin in infants and children is favorable. This means that most people will either     epilepsy. Key among them is metabolism. As people age into their senior years,
enter a remission as they exit childhood or they can expect a good response to
                                                                                                                                                        (continued on pg. 11)

         Traumatic Brain Injuries have been a common and devastating con-         Epilepsy Center of Excellence, one of the six national centers established
    sequence of war throughout time. Today, as troops return from Iraq and        in 2009 by the VA to address the needs of returning servicemen who have
    Afghanistan, their experiences enforce the fact that TBIs continue to be      suffered a TBI, sees the importance of having a game plan in place.
    a major risk for those who serve in the military. In fact, Traumatic Brain          “We need a better infrastructure for veterans returning with Trau-
    Injury is being labeled as the “signature wound” of modern day combat.        matic Brain Injuries,” Dr. Rutecki explains. “The Epilepsy Centers of
         Whether the injury is from a land mine blast, improvised explosive       Excellence have been created to not only improve the quality and avail-
    device, or a gunshot wound, it can have a significant impact on the sol-      ability of care for veterans with TBI, but also to anticipate the needs for
    dier’s daily life, including the development of Post Traumatic Epilepsy. Of   Post Traumatic Epilepsy care.”
    the 1.64 million soldiers who have served in Operation Enduring Freedom             Studies have been done in the past on the correlation between
    and Operation Iraqi Freedom, 19% (320,000) will experience a Traumatic        epilepsy and veterans who have experienced a TBI. The decades long
    Brain Injury. As many as 34% of veterans with moderate to severe cases        Vietnam Head Injury Study has shown that 44% of veterans who experi-
    of TBI will develop Post Traumatic Epilepsy, with rates as high as 53% for    enced a penetrating brain injury at least 35 years earlier developed Post
    those with penetrating skull injuries.                                        Traumatic Epilepsy. Inexplicably, thirteen percent of study participants
         Dr. Paul Rutecki, Director of the Veterans Association’s Northwest       showed no sign of PTE until more than 14 years after the injury.

                                                                                                                                   (continued on next page)

                               BRINGING THE
                                BATTLE HOME
                                                         Traumatic Brain
                                                        Injury is the next
                                                          front in the war
                                                              on epilepsy.
                                                                                                                                 by Morgan Murphy
                                                                                                                       Director of Communications

(continued from previous page)                                       “I have to admit, I wasn’t asking good questions,”             Currently, Dr. Rutecki and his colleagues of the
       Jim Davies, a Vietnam veteran who served as a            Davies says, “but that was because I didn’t know what        Epilepsy Centers of Excellence are working with the
Lance Corporal in the Marine Corps, understands the             to ask.”                                                     Veterans Association to create a solid system that will
importance of Post Traumatic Epilepsy care all too                   Davies believes that miscommunication was the           effectively serve veterans who have experienced a
well. His last memory of November 16, 1968, was get-            key component to the lack of adequate care he re-            Traumatic Brain Injury.
ting into a small truck off his base that later “went off the   ceived. “Everyone assumed that someone else was                     “The VA is the largest healthcare system in the
side of a mountain.”                                                                                                         United States,” Rutecki says. “We can utilize each
                                                                                                                              other’s resources, such as military records, to create
                                                                “(The nurse) told me
       “The next thing I knew, I was waking up in an Air
Force hospital in the Philippines, strapped down with                                                                         a meaningful database that will keep track of veterans
                                                                                                                              who have had a TBI. Over time, our studies will show
                                                                I had a seizure. And it
my head wrapped up,” Davies recalls. “And I didn’t
know why.”                                                                                                                    how it impacted them and then enable us to provide
                                                                                                                              them with the best possible care.”
                                                                was the first time I had
       This was the beginning of a long and arduous
recovery process for Davies who had suffered from a                                                                                 The Epilepsy Centers of Excellence’s goal, to im-
Traumatic Brain Injury. The following day on a plane                                                                          prove the quality and availability of care for veterans
transport heading for the U.S., Davies still hadn’t re-
ceived any answers as to what had happened.
                                                                even heard of epilepsy.”                                      with epilepsy, means a great deal to Davies.
                                                                                                                                    “It is so important for veterans with epilepsy to
                                                                                                                              have educational programs and services that are
                                                                      - Jim Davies, Veteran
       “I would wake up and they would give me a
shot,” Davies says. “When they saw me wake up                                                                                 understandable and easily available,” he states. “No-
again, they’d just give me another.”                                                                                          body should have to go through what I did. The lack of
       Davies was taken to the Great Lakes Naval                                                                              information I received caused as much trouble as my
Hospital in Chicago and was put on anti-epileptic                                                                             epilepsy itself.”
                                                                explaining to me what was going on. The military
medication, although he didn’t know what it was.                                                                                    Davies sees his experience with the nurse at
                                                                thought that the VA would handle it because I had been
       “No one gave me any kind of explanation. More                                                                         Highland Park Hospital as a “starting point.”
                                                                discharged and the VA thought that the military had al-
worrisome than anything else was not being aware of                                                                                 “I began to put the pieces together,” he says. “I
                                                                ready taken care of the issue.”
my situation. Not only did I not know what was happen-                                                                       remembered when a student in my high school had a
                                                                      Months later, when Davies woke up in the High-
ing, I also didn’t know what was going to happen.”                                                                           seizure… At the time, I didn’t know what was going on,
                                                                land Park Hospital Emergency Room and asked the
       Davies was discharged from the military for medi-                                                                     all I knew was that he never came back to class. Be-
                                                                nurse what had happened, he finally got a straight an-
cal reasons that he didn’t understand. When he had his                                                                       ing able to understand what had happened all those
first seizure, he was referred to the Veterans Associa-                                                                      years before, helped me to continue to have a life.”
                                                                      “She told me I had a seizure,” Davies vividly re-
tion where he was told he had Post Traumatic Brain              calls. “And it was the first time I had even heard of epi-
Syndrome, something he had never heard of before.               lepsy.”                                                                                        (continued on pg.11)

                            “Where Sacrifice and Courage Unite Generations of Veterans”
                     June 17-19, 2011                                                                Chicago, Illinois
    All veterans, their families & all supporters of our Armed Forces are invited to this very special event of the
        25th Anniversary of the Chicago Vietnam Veterans Welcome Home Parade
    It will be a full weekend of events that includes:
                  Veterans Art and Photo Exhibit at the Chicago Cultural Arts Center.
                  Presentation by Veteran authors.
                  “Moving Wall” on display at Navy Pier.
                  Saturday morning kick-off rally at Navy Pier – opening ceremony followed by entertainment.
                  Saturday banquet with Bill Kurtis as the Master of Ceremonies, acknowledging the
                  City of Chicago and honoring all veterans with Medal of Honor Recipients as special guests.
                  Sunday morning inter-faith ceremony featuring Reverend John Steer.
                  Information booth, vendors, variety of seminars and hospitality suites for mini-reunions.
                  Sunday afternoon of music at Millennium Park featuring Dennis DeYoung and the music of
                  Styx, ARRA, Joe Cantafio and the 101st Rock Division, Kimotion, and more.

                                                   www.ServiceandHonor.org                                                                                                        7
Volunteer                                                                                                                                      Gwen lives in the city and

                                                                                       Gwen Ramirez                                            is a member of the City/
                                                                                                                                               South CAB, she works in
                                                                                                                                               Niles and knew that the
                                                                                                                                               CAB covering that area
                                                                                                                                               needed help getting per-
                                                                                                                                               mits for Purple Day activi-
TONY KNEPPER:                                                                                                                                              “I work out there,
“I’ve learned so much here...I want to give back.”                                                                                             so I figured I can help out
Seeing that there were other people with epilepsy who were facing similar chal-                                                                there too.”
lenges to his left Tony Knepper feeling relieved and grateful. The Epilepsy Foun-                                                                          As Gwen works
dation of Greater Chicago gave Tony the opportunity to get more in touch with                                                                  on growing the Community
the epilepsy community, and in return, he wants to do all he can to show his                                                                   Advisory Boards, she and
appreciation.                                                                                                                                  Jonathan also participated
      “Before I connected with the Foundation, I didn’t know that people go through                                                            in this year’s annual Public
what I go through,” Tony explains. “I’ve learned so much here and am now much                                                                  Policy Institute in March
more aware of my opportunities.”                                                                                                               (see page 2 for more on
      Tony has helped the Epilepsy Foundation in a variety of ways. Whether he’s                                                               their trip). At PPI, families
offering support for Purple Day or answering the phone at the office’s front desk,                                                             come together in Wash-
his dedication has been invaluable.                                                                                                            ington, DC and advocate
      “The staff are very knowledgeable here and I have gotten very useful vo-                                                                 for people with epilepsy by
cational assis-                                                                       meeting with their politicians and vocalizing their opinions.
tance, along                                                                               “It’s so exciting to advocate for EFGC,” Gwen says. “After all they’ve done for
with help figur-                                                                      Jonathan and for everything they have taught me, I feel so empowered and want
ing out my So-                                                                        to do everything I can.”
cial Security
benefits,” Tony
says. “That’s                                                                         MARA GOLDMAN:
why it is so                                                                          “I work hard because EFGC works so hard.”
important to                                                                          Chicago native Mara Goldman is clearly a dedicated member of the EFGC com-
me to offer my                                                                        munity. The ever growing success of her annual walk team, “Seizure Free,” con-
help. I want to                                                                       tinues to be a highlight of the event each year.
give back.”                                                                                  Mara does a lot more than just raise thousands of dollars for the Foundation,
      T o n y                                                                         however. As someone with epilepsy, she understands how important it is for EFGC
continues                                                                             to continue to provide its
to give back                                                   Tony Knepper           programs and services            Mara Goldman
each week as                                                                          to the Greater Chicago
he regularly                                                                          area.
volunteers at the Foundation. His friendly demeanor and bright smile are a wel-              Whether it’s distrib-
come addition to the organization and the perfect way to greet clients and guests     uting epilepsy materials
as they come in. We’re happy to have Tony as a part of our team!                      in her community, hosting
                                                                                      three separate Talk About
                                                                                      It! @ Dinner events within
GWEN RAMIREZ:                                                                         one week, volunteering at
“I’m just trying to get the word out and do what I can.”                              the Foundation’s annual
When Gwen Ramirez’s son, Jonathan, was first diagnosed with epilepsy in 2001,         Consumer Conference, or
she saw a Greater Chicago Epilepsy Walk poster at his doctor’s appointment and        mentoring a person with
knew she had to get involved. Each year since then, the “Journey for Jonathan”        epilepsy, Mara is always
team has been a huge success as Gwen has been able to rally hundreds of friends       finding a way to help give
and family to support the Epilepsy Foundation of Greater Chicago.                     back what the Epilepsy
      “It’s not Jonathan’s team, or my team,” Gwen explains. “it’s our team and we    Foundation of Greater
reach out to everyone to help.”                                                       Chicago has given to her.
      In 2009, Gwen learned about the Foundation’s Community Advisory Boards                 “I work hard because
at the Camp Blackhawk orientation. CABs are an all volunteer board committed to       EFGC works so hard,”
acting as a liaison between EFGC and their local communities. Gwen jumped on          Mara says. “It has helped
the chance to take part.                                                              me in so many ways and I
      “I’m so excited by how things are progressing,” Gwen says. “We have a great     feel like I am back on my feet because of the support I have been given. I am just
team of people who are all dedicated and want to do good.”                            happy to be able to do something for them.”
      Gwen’s CAB was instrumental in making the Foundation’s “Purple Day,” epi-              Mara’s willingness to give back is such an important part of the Foundation.
lepsy awareness initiatives, a success.                                               Her dedication is key to its success and we are very fortunate to have her as such
      “I’m just trying to get the word out and do what I can,” Gwen explains. While   a close friend!

Upcoming                                                                                              EPILEPSY SUPPORT

Eleventh Annual Greater Chicago Epilepsy 5K
                                                                                                      GROUP NETWORK
                                                                                                      ADULT GROUPS
                                                                                                      Chicago, Loop
                                                                                                      2nd Thursday at Noon
                                                                                                      Epilepsy Foundation Office
                                                                                                      17 N. State St., #1300, Chicago
                                                                                                                                               PARENT GROUPS
                                                                                                                                               Chicago, South
                                                                                                                                               1st Saturday at Noon
                                                                                                                                               University of Chicago
                                                                                                                                               Comer Children’s Hospital
                                                                                                                                               5841 S. Maryland Ave., Chicago
Saturday, May 14, 2011 • Danada Forest Preserve, Wheaton
                                                                                                      Chicago, Loop (Spanish)
Saturday, May 21, 2011 • Montrose Harbor, Chicago                                                     1st Friday at 10 am                      Chicago, South (Spanish)
                                                                                                                                               1st Monday at 10 am
Come join us for the eleventh annual                                                                  Epilepsy Foundation Office               Pius V Church
Greater Chicago Epilepsy 5K in Wheaton’s                                                              17 N. State St., #1300, Chicago          1919 S. Ashland, Chicago
Danada Forest Preserve on Saturday,                                                                   Chicago, North Side (Spanish)            Evanston
May 14 and in a brand-new location in                                                                 3rd Wednesday at 2 pm                    2nd Thursday at 7 pm
Chicago’s Montrose Harbor on Saturday,                                                                Logan Square Health Clinic               Evanston Hospital
                                                                                                      2840 W. Fullerton, Chicago               2650 Ridge Rd., Rm. G952-956
May 21! The Montrose Harbor event will                                                                                                         Evanston
be a timed 5K run for those who wish to                                                               Chicago, Northwest Side
get an official timing for their records—but                                                          1st Wednesday at 6:30 pm                 Schaumburg/Hoffman Estates/
                                                                                                      Our Lady of the Resurrection Med. Ctr.   Elk Grove Village
don’t worry, you can also walk, stroll, or                                                                                                     Last Wednesday at 7:30 pm
                                                                                                      5645 W. Addison, Chicago
jog, same as always. Register online at www.epilepsychicago.org or by calling Lauren                                                           Alexian Brothers Medical Center
                                                                                                                                               800 Biesterfield Rd., Eberle Bldg.
McTigue at 312-939-8622, x209.                                                                        Chicago, South Side                      Elk Grove Village
                                                                                                      (Spanish, Women)
                                                                                                      1st Monday at 10 am
Night Out With the Chicago Sky                                                                        Pius V Church
                                                                                                                                               West Suburban Mothers Group
                                                                                                                                               3rd Saturday at 7 pm
                  Saturday, June 25, 2011                                                             1919 S. Ashland, Chicago                 Meeting location varies. Call Tracy (312-
                                                                                                                                               939-8622, x224) for location information.
                  Allstate Arena • Rosemont                                                           Chicago, West Loop (Eng/Span)
                 Join the Chicago Sky for a night of world-class WNBA basketball and fam-             4th Friday at 10 am                      Winfield/Carol Stream
                 ily fun on June 25, when the Sky take on the Phoenix Mercury. A portion of           Stroger Hospital, 1900 W. Polk St.,      2nd Wednesday at 7 pm
                                                                                                      Room LL665, Chicago                      Central DuPage Hospital
                 the proceeds from your $15 or $30 ticket purchase will be donated back to                                                     25 N. Winfield Rd., Winfield
                                                                                                      (Group will be held in English on even
                 the Epilepsy Foundation of Greater Chicago. To order tickets, contact Lind-          months and Spanish on odd months)
say Dresser at 312-994-5988 or ldresser@chicagosky.net. Tickets may also be purchased
online at www.tinyurl.com/efoundation.                                                                Elgin
                                                                                                      4th Thursday at 7 pm                     SENIOR GROUP
                                                                                                      St. Joseph’s Hospital
2nd Annual “Day for Zach”                                                                             77 N. Airlite, St. Luke Rm., Elgin
                                                                                                                                               Chicago, Downtown
                                                                                                                                               3rd Friday at 10 am
Monday, June 27, 2010                                                                                                                          Epilepsy Foundation Office
Seven Bridges Golf Club • Woodridge, IL                                                               2nd Thursday at 7 pm
                                                                                                                                               17 N. State St., #1300, Chicago

On Monday, June 27, the family of Zach Pfingston will be hosting a golf outing at the                 Evanston Hospital
Seven Bridges Golf Club in Woodridge. All net proceeds from the event will be used in                 2650 Ridge Rd., Rm. G952-956
support of Camp Blackhawk, in memory of Zach, an avid Camp Blackhawk participant.
                                                                                                                                               YOUNG ADULT GROUP
The cost is $125 per person, which includes golf and lunch with an auction. Those wish-               Evergreen Park                           Chicago, Downtown
                                                                                                      2nd Tuesday at 6:30 pm                   3rd Saturday 2-4 pm
ing to attend the luncheon only may do so for $50. Tee-off time is 8:00 am for 18 holes of                                                     Barnes and Noble
                                                                                                      Little Company of Mary Hospital
scramble format golf. For more information, or to RSVP, call Jack or Manjula Pfingston at             2800 W. 95th St.,Tower Bldg,             1 E. Jackson Blvd., Chicago
630-964-2935.                                                                                         6th Floor, Evergreen Park                (For more info, call Kimberly Taylor
                                                                                                                                               at 773-474-9286.)
                                                                                                      Oak Park
Camp Blackhawk                                                                                        1st & 3rd Tuesday at 6:30 pm
                                                                                                      Oak Park Hospital,
Sunday, July 17 to Friday, July 22, 2011                                                              520 S. Maple, Oak Park                   TEEN GROUP
Red Leaf Village • Ingleside, IL                                                                                                               Chicago and Suburbs
Camp Blackhawk, located in north suburban In-                                                         St. Charles                              One Saturday each month
                                                                                                      1st Tuesday 7 pm                         Time and location vary due
gleside, is a great opportunity for kids ages 6-18 to                                                 Hosanna Lutheran Church                  to special outings. Call Tracy
experience the fun of camp activities, all designed                                                   36W925 Red Gate Rd.                      (312-939-8622, x224) for info
to be accessible and adapted to individual needs                                                      St. Charles

and abilities, and all in a safe, medically-monitored setting. Download camp applications at          Winfield/Carol Stream
www.epilepsychicago.org or call Meredith Taylor at 312-939-8622, x202.                                2nd Wednesday at 7 pm                    Times, dates, and locations of all support
                                                                                                      Central DuPage Hospital                  groups are subject to change. Except
                                                                                                      25 N. Winfield Rd., Winfield
                                                                                                                                               where indicated, please call the Epilepsy
Eleventh Annual EFGC Golf Outing                                                                                                               Foundation office at 312-939-8622 before
                                                                                                      Chicago, Adult Social Club
Tuesday, August 30, 2011                                                                              1st & 3rd Tuesday at 1 pm                attending any group for the first time.
Ruffled Feathers Golf Club • Lemont, IL                                                               Epilepsy Foundation Office
The Epilepsy Foundation of Greater Chicago’s eleventh annual Golf Outing will take place              17 N. State St., #1300, Chicago
                                                                                                      Chicago, Adult Job Club
on Tuesday, August 30, at Ruffled Feathers Golf Club in Lemont. The cost per golfer is                2nd & 4th Thursday at 10:30 am
$250, which includes 18 holes of scramble format golf with cart, lunch, post-outing cock-             Epilepsy Foundation Office
tails, and dinner. Tee-off is at 1:30 pm, with registration and lunch starting at 12:30 pm. For       17 N. State St., #1300, Chicago
more information, or to reserve a place, call Lauren McTigue at 312-939-8622, x209.

IEP (continued from pg. 4)
      The Epilepsy Foundation of Greater Chicago         • Familiarize yourself with special education             ers are trained and available to advocate at your
offers the following guidelines that parents may         terminology.                                              child’s IEP meeting. EFGC case managers are
consider when preparing for their child’s IEP meet-      • Understand your child’s legal rights to spe-            also available to assist you in preparing for the IEP
ing:                                                     cial education. Become familiar with the 2004             meeting. In addition, EFGC’s community educator
• Obtain a copy of your school district’s IEP form       Individuals with Disabilities Education Act (IDEA)        is available to provide presentations on epilepsy
before the evaluation.                                   laws and regulations.                                     education to school staff and students.
• Become an expert about your child’s educational        • Be prepared to speak directly about your child’s              Parents with concerns or questions regarding
performance and needs.                                   seizure type. How will the seizure activity affect your   IEPs should contact our Case Management team at
• Put together your child’s ideal IEP so that you are    child’s academic performance?                             312-939-8622.
prepared to discuss the educational program and          • Develop a seizure action plan. How should your                For additional information on legal is-
services that you prefer for your child.                 child’s teacher and other staff respond to your child     sues surrounding education, visit www.
• Obtain relevant statements from your child’s neu-      is he or she has a seizure in school?                     epilepsyfoundation.org/living/children/education/
rologist concerning appropriate modifications or ac-     • Invite appropriate advocates to speak at the IEP        Education.cfm
commodations that need to be in the IEP.                 meeting on your child’s behalf. EFGC case manag-

AGING               (continued from pg. 5)

dosage of a drug is less than it would be for younger    lating risk of morbidity and mortality of uncontrolled    certain ages. Although strokes can occur in young
people. But as for all people, metabolism varies         seizures overtime. Whether seizures worsen with           individuals, it is most likely to occur at older ages.
from person to person. This is why I might check         age is highly individual but when this occurs it          In fact, 10% of people that experience a stroke
a level of a seizure medication to get an idea of        often reflects a history of inadequate control of         will develop epilepsy. This is also the case with
the baseline. Aging is also associated with the          seizures. Factors such as peri-menopause can be           Alzheimer’s disease. As in other people who have
acquiring of other medical problems that might           associated with increased rate of seizures but post-      epilepsy as a cause of some other neurological ill-
necessitate treatment. Both the medical problem          menopause seizure frequency may actually lessen.          ness, quality of life can be driven as much by that
and the treatment must be considered in relation         This hurdle is in part due to hormonal changes.           disease as with the symptom of epilepsy. Finally,
to possible interactions with epilepsy and its treat-    This underscores the concept that seizures can            people with epilepsy need to update their neurolo-
ment. It is not clearly the case, however, that the      be a hormonally sensitive phenomenon. However,            gist with any changes in health even if they might
older one becomes, the more dangerous seizures           the interaction of testosterone and epilepsy is less      not think it is relevant.
can be. For sure, elderly individuals may have a         understood than with estrogen/progesterone. But,
higher fracture risk with falls from a seizure and       men generally do not experience dramatic changes
possibly at risk of a cardiac event. On the other        in hormones over time.                                    Roy Sucholeiki, MD, is Medical Director of the
hand, younger individuals may participate in riskier           A discussion about aging and epilepsy cannot        Comprehensive Epilepsy Center at Central DuPage
activities that in the event of seizure could increase   be had without the understanding that epilepsy can        Hospital and a member of the Epilepsy Foundation
risk of injury or death. Overall, there is an accumu-    start due to illnesses that have higher incidences at     of Greater Chicago’s Professional Advisory Board.

TBI        (continued from pg. 7)

             With Davies’ newly found knowledge,         you react to having epilepsy?                             lepsy,” an educational program at the Jesse Brown
he was beginning to find the care he needed. The               “I learned that you have to ask questions, and      VA Medical Center in Chicago. He presented on
VA’s mental health department referred him to the        that you cannot accept ‘non-answers.’ It was my           Post Traumatic Epilepsy to veterans, as well as to
Epilepsy Foundation of Greater Chicago, which he         goal to get that across.”                                 staff of the organization.
claims was “the best thing anyone could have ever              Davies believes that it is the responsibility of          “The educational program at the VA was a great
done.” When Davies went to his first appointment         the military and the Veterans Association to educate      step after years and years of lack of information,”
with an Epilepsy Foundation social worker it had         veterans on the possibilities of what might happen        Davies says. “Community outreach is so important
been seven years since his Traumatic Brain Injury.       as a consequence of a Traumatic Brain Injury. Look-       to meeting the needs of veterans with epilepsy.”
       “I had gotten lost in the system,” Davies real-   ing back, he feels that his epilepsy made him “more             Dr. Rutecki is interested in the studies being
izes, “but eventually found the resources I needed.”     secretive” because he didn’t know what was hap-           developed by the Epilepsy Centers of Excellence.
       When the Epilepsy Foundation was given a          pening and therefore, didn’t feel comfortable telling     Providing appropriate care to veterans is a crucial
demonstration grant, Davies was offered a job to         others about it.                                          step, just as is the research that is being put in
initiate self-help groups.                                     “It can be hard to admit that you have epilepsy     place.
       “I wanted to be there for others,” he says. “If   if you don’t understand what it is.”                            “The neurology community is coming togeth-
you don’t have information about epilepsy, how can             Recently, Dr. Rutecki spoke at “Operation Epi-      er,” he says, “and the veterans will be supported.”

Epilepsy Foundation of Greater Chicago
17 N. State Street, Suite 1300                                                      Non-Profit
Chicago, IL 60602                                                                  Organization
                                                                                   U.S. Postage
                                                                                   Permit No. 111
                                                                                    Chicago, IL

                                          The Greater Chicago

                                                                            M urs Tra
                                                                             co SA
                                                                             on e c
                                                                               tro ce k &

                                                                                  se rti Fi
                                                                                    Ha fied eld
                                                                                      rb b
                                                                                         or y
  2011   Proceeds Benefit the Epilepsy
       Foundation of Greater Chicago

                                     Saturday, May 14 • 5K Walk/Fun Run
                                                 Danada Forest Preserve • Wheaton

                             Saturday, May 21 • 5K Walk/Timed Run
                                         NEW LOCATION! Montrose Harbor • Chicago

                                                www.epilepsychicago.org • 1-800-273-6027

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