A Quarterly Publication of the Epilepsy Foundation Western/Central Pennsylvania interaction 1323 Forbes Avenue, Suite 102 • , PA 15219 • 412-261-5880 1-800-361-5885 2004 Winter Edition http://www.efwp.org

The EFWCP is proud to announce the launch of a completely overhauled website with a new EMPOWERMENT... vibrant look, a more confident message and a variety of web-based tools for people looking for information related to epilepsy or seizure disorders. UNEQUALLED “The reality of today’s world is that people need answers to questions outside the context of the regular nine to five business day. This absolutely COMMITMENT... doesn’t replace the benefit of having professional staff to help you but if you think of a question, want to register for an event or feel like communicating with other folks at off hours, now INNOVATION... you can do so by logging onto our website, anytime of the day or night,” said EFWCP Executive Director Judith K. Painter. INDIVIDUALITY People participating in EFWCP special events will find the new website an especially convenient way to register for events. Participants in our direct appeals for donations to family and friends This is the message you’ll find annual Run/Walk for Epilepsy events, for example, via e-mail with an easy-to-use online donation link can log onto www.efwp.org and register as an to our website. at www.efwp.org, our new individual runner or walker, as a team captain or as There are currently online registration options part of a team. And, a new online donation feature available for a variety of program activities as home on the World Wide Web. will make it possible for this year’s runners and well, including registration for the 9th Annual walkers raising money for the EFWCP to make Conference on Epilepsy and Camp Frog 2004. continued on page 8 Life Without Compromise 2004 Conference on Epilepsy to be held at Penn State

The EFWCP will host its 9th Annual Conference on Epilepsy at the Days Inn Penn State in State College on Saturday, April 17. As in previous years, the conference will offer a variety of concurrently held workshops and a keynote speaker during a general luncheon session. The EFWCP will welcome former United Parcel Service international pilot John O’Grady of Dayton, Ohio as the keynote speaker for the April 17 conference. John will share his story and will discuss his many journeys with epilepsy through a motivational speech during the conference luncheon. John experienced his first seizure in April of 2000, lost his driver’s and pilot’s licenses and was forced to give up his career. John decided early on that he had two choices - give in to the frustrations of epilepsy or turn his continued on page 8

inside interaction Non-Profit Org. U.S. Postage ■ Paid Dr. Todd Barron Moves to Wellspan page 2 Pittsburgh, PA Permit No. 1390 ■ Sate Funding for Epilepsy Restored page 2 ■ Into the Light page 3 1323 Forbes Avenue • Suite 102 ■ Pittsburgh, Erie & Harrisburg Pittsburgh, PA 15219 Services delivered by the Epilepsy Foundation Western/Central Pennsylvania are supported by the Pennsylvania Department of Health Run/Walks pages 4 & 5 through the Maternal and Child Health Services Title V Block Grant from the U.S. Department of Health and Human Services as well as State funds. The Pennsylvania Department of Health is an equal opportunity provider ■ Camp Frog page 6 of grants, contracts, services and employment. ■ Calendar of Events page 6

■ Annual Conference Registration RETURN SERVICE REQUESTED Information pages 7 & 8 Page 2 interaction Dr. Todd Barron Joining the Staff of Wellspan Neurology

WellSpan Neurology | 290 St. Charles Way | York, PA 17403 | www.wellspan.org

1323 Forbes Avenue • Suite 102 Dr. Todd Barron, M.D., received his medical education at the Mount Sinai School of Medicine in New York, Pittsburgh, PA 15219 followed by his residency and a fellowship in pediatric neurology at Children’s Hospital in Philadelphia. 1-800-361-5885 Phone 412-261-5880 Most recently, Dr. Barron has been serving as the Chief of the Division of Pediatric Neurology and as an Fax 412-261-5361 Associate Professor of Pediatrics at Milton S. Hershey Medical Center. Dr. Barron is board certified in TDD EOP/AUX AID pediatrics and neurology and will be specializing in pediatric epilepsy at Wellspan. 1-800-855-2880 Dr. Barron is also a member of the EFWCP Central Region Advisory Committee and has been an active http://www.efwp.org supporter of the EFWCP for many years.

BOARD OF Peter Rockwell GOVERNORS Thomas Trimm, Esq. Karin A. Vanek Douglas Dick Steve Morris ADVISORY Rich Ryan BOARD State Funding for Epilepsy POLICY Barbara Johanson BOARD Bobbie Martha C. James Parks Louis Testoni Ronald Rohm Services Restored President James Valeriano, M.D. Sharon Aulicino George Whitmer Dick Barton The diligence and efforts of those of you who The Epilepsy Foundations of Western/Central Joyce Bender took the time to contact the Governor's office and Eastern Pennsylvania have been fortunate Louis Catalano, M.D. PROFESSIONAL and members of the Pennsylvania House of to have a bi-partisan group of members in Tom Chakurda ADVISORY BOARD Representatives and Senate have paid off - both the House and Senate who led our James D. Chiafullo Patricia Crumrine, M.D. and we sincerely thank you all. advocacy efforts. We'd like to extend a Patricia Crumrine, M.D. Chairperson Eugene DeFrank Governor Edward Rendell and the special thank you to Governor Rendell Steve Greenberg David Adelson, M.D. members of the Pennsylvania General and the entire General Assembly but George Harakal Jill Bischoff, CRNP Assembly finalized part two of the especially to the following Scott Heeter Jane Breck, M.D. state budget in December 2003 and members: State Representative John Hinds Richard Brenner, M.D. Irene Kane Anne C. Van Cott, M.D. have fully restored state funding for Thomas Tangretti (D - Lawrence Leventon, Esq. Imad Jarjour, M.D. epilepsy services for the remainder Westmoreland County), Denis McCarthy Kevin Kelly, M.D. of the fiscal year. Representative Bill Theresa MacLean Carol Lane "We are so very grateful Adolph (R - Delaware Grant Mellon William McGhee, Pharm. D. to the many members of the County), Representative Robert Moorehead Don Middleton, M.D. Paul Nemiroff, Ph.D., Fran Meyers, DO state House and Senate who Kerry Benninghoff (R - M.D., F.A.C.S. Mark Scheuer, M.D. advocate for our Centre County), James H. Norris, Esq. James Valeriano, M.D. funding," said Judith K. Representative Harry Donn Patton Rajiv Varma, M.D. Painter, EFWCP Readshaw (D - Executive Director. "We are fortunate that there are Allegheny County), Representative Joseph STAFF members from both sides of the state and across all Markosek (D - Allegheny County), Senator Jay Judith K. Painter Colleen K. Kaufman regions of Pennsylvania who support and understand Costa (D - Allegheny County), Senator Allen Executive Director Special Events the importance of the state funding for epilepsy Kukovich (D - Westmoreland County) and Peggy Beem Coordinator Associate Director Lynne Gensamer services." Senator Stewart Greenleaf (R - Bucks County). Francine Eden Financial and Benefits Adult Services Administrator Coordinator Sandy Shevchik Beth Reilly Secretary Children & Family Greg McConnell Services Coordinator Central PA Support 2004-2005 Budget Negotiations Kathi Finch Services Coordinator Community Education Gretchen Knaub Coordinator Central PA School and Kristin Lesker Community Education Already Underway Special Events Coordinator Coordinator Becky Bollen Central PA While it seems as if the budget debate has the Governor's proposal, hold a variety of Receptionist/Secretary just settled, it is in fact just beginning for the public hearings and develop a budget bill for 2004-2005 fiscal year that begins July 1, 2004. consideration by the full General Assembly. Governor Edward Rendell introduced his The Epilepsy Foundations of Western/Central budget proposal for next year on February 3. Pennsylvania and Eastern Pennsylvania will host Interaction is published quarterly by the Epilepsy That proposal includes full funding of the state a joint legislative breakfast in the state capitol on Foundation Western/Central Pennsylvania (EFWCP). We welcome your feedback. Questions, comments, letters to line item for epilepsy support services for Tuesday, March 30 to urge the members of the the editor, story ideas, articles, poems, photography or art another year. The House and Senate General Assembly to maintain state funding for submissions should be addressed to Interaction Editor, c/o EFWCP, 1323 Forbes Avenue, Suite 102, Pittsburgh, PA Appropriations Committees will now consider epilepsy services. 15219; 1-800-361-5885, (412) 261-5880, (412) 261-5361 (Fax), http://www.efwp.org or for the hearing impaired TDD EOP/AUX AID 1-800-855-2880. interaction Page 3 From Out of a Tunnel and Into the Light by Shirley Pieri he spring of 1986 was the entrance to a dark, fifteen year-long tunnel of pain and fear. As I lay staring at the ceiling of the Tiffany grabbed vast hospital emergency room, I could not help but realize that my life had the phone Tchanged forever. But wait - I didn’t want anything and yelled, to change. I was a happy, healthy sixteen-year- old. I had my whole life ahead of me. In fact, the Monday following this fateful day, I was “Mommy’s scheduled for my driver’s license test. Instead, I would be undergoing medical tests to determine bleeding!” what was happening to me. Several months later, I was diagnosed with temporal lobe complex partial seizures. Never be During my seizures, I would not always fooled by a diagnosis - this was only the convulse, but would make involuntary motions. beginning. These consisted of rolling my fingers, smacking my lips, and other motions that suggested deliberate activity. On one such day, we were seated as a As I lay staring at ■ Shirley with husband Russell and daughter Tiffany. family in church when suddenly I began to undress the baby. First I removed her shoes, then her socks, the ceiling of the until Russell realized I was in the middle of a I must admit that even when you are in dark seizure and rescued Tiffany from my arms. vast hospital tunnels, you will find angels. On August 18, 1989, Things continued to escalate and the seizures I married my childhood sweetheart. Russell and I grew worse. On another occasion, I had a seizure emergency room, had a beautiful wedding day, but not even this while I was sitting in the passenger seat of my perfect day was unscarred by my seizures. While I mother’s car while she drove us down the highway. I could not help was singing to him, I had a seizure. Thankfully, it I simply reached for the door handle and tried to was only an absence seizure and the ceremony was get out of the car. I can’t imagine the horror felt by but realize that not disturbed as badly as it could have been. The my mother as she worked to keep the car on the following day, we proceeded as planned on our road while also trying to keep me in the car. my life had honeymoon. We were certain the worst was My fears of Tiffany being hurt came true when behind us. Unfortunately, we were wrong. Can she was about four years old. I was talking on the changed forever. you imagine how my young, handsome groom felt telephone with a friend and had a seizure. Tiffany as he faced one of my seizures alone? This was to grabbed the phone and yelled, “Mommy’s be a sacred, special time in our lives, and now he bleeding!” I had fallen into the door and broken I continued through high school, then on to was desperately praying for divine intervention. my nose. When I awoke, I remember seeing only college, all the while experiencing both tonic- Little did this young man know it, but we were the horribly frightened look on my little girl’s face clonic and absence seizures. My parents took me about to encounter another problem in this already when she found me covered in blood. She is older to several different doctors who all tried their own dark tunnel. I was diagnosed with polycystic now and can still recall the day she found me on solutions, but to no avail. The pain in my head ovarian disease and endometriosis. The long and the floor. Tiffany has suffered in so many ways, grew worse, along with my fears. I began to feel short of it - infertility. After four years of but I must admit that she has been more resilient like a ticking time bomb ready to detonate. My struggling with infertility, we became the proud than I. She’s been my nurse and takes pride in her list of medications grew longer as we drifted parents of a little girl. Although we were both job. I am so thankful for being given such a further from a solution. The more doctors I was grateful for our little angel, we were also precious gift. taken to, the darker the tunnel became. The darker frightened, for we knew she would have to I have felt guilty many times because I felt like the tunnel, the more hope began to evaporate. journey with us through this dark tunnel. I was cheating her out of her childhood. I’ve watched other mothers and daughters playing and I would cry because I could not do those things with my own daughter. I’ve been sick most of her life, out of focus and drugged from the medication. Half of her baby book isn’t filled out, and there are things I don’t remember about her. I don’t remember many firsts - her first words, first tooth, first step. At times, this has been very painful for me because this is time that I will never get back. The more time that dragged on without a solution, the darker the tunnel became. I grew sicker and weaker with each new doctor. The pressure to find a solution grew more intense every day. When everyone was celebrating the new millennium, my family and I had a different reason to celebrate. We found a doctor who admitted that he didn’t have a solution but knew someone who would. With grateful hearts, we embarked on our next adventure.

The conclusion of Shirley’s story will be ■ Shirley says her dad Charlie and her little girl Tiffany have both provided her with a lot of inspiration and motivation. published in the next issue of Interaction. Page 4 interaction Every Step Counts Family Fun Run/Walks

It is time once again to put on your fundraising shoes and run/walk for epilepsy. The fun will be coming to a city near you! Individuals, teams, families and corporate supporters will unite this summer to have fun and raise funds for the Epilepsy Foundation Western/Central Pennsylvania. "We’re thrilled that so many people across Pennsylvania have come out in support of these events," REGISTRATION says EFWCP Special Events Coordinator Kristin Lesker. "I know that our 2004 run/walk events will be Family Fun Run/Walk the best ever and I’m looking forward to an even bigger turnout this year at all three walks." • Saturday, June 19 Prizes are awarded to the teams and individuals that raise the most money. All participants are eligible • Registration begins at 8:00 am for a free ticket to a baseball game, a commemorative T-shirt, and other premium prizes. People who • Run/walk begins at 9:30 am participate on a team are eligible for both individual and team prizes. "It’s heartening to see all of the original and new ways that folks raise money and awareness for the Erie SeaWolves Family Fun Run/Walk run/walk events for epilepsy," says Colleen Kaufman, EFWCP Special Events Coordinator. "The kids are • Saturday, July 10 always especially creative and when we see all of the work that they put into the event, it really motivates • Registration begins at 8:30 am all of us to do better year after year." • Run/walk begins at 9:30 am

■ Jim Krenn of WDVE Radio, the Pirates Parrot Harrisburg Senators Family Fun Run/Walk and Andrew Stockey of WTAE TV will again • Saturday, August 14 be on hand to start the Pittsburgh race. • Registration begins at 8:30 am • Run/walk begins at 9:30 am

■ Pittsburgh Run participants party on Bridge. Pittsburgh Join us for the 16th Annual Pirates Family Fun Run/Walk on Saturday, June 19 at PNC Park. This 5k run/2 mile walk will take you on a sightseeing tour of the Pittsburgh North Shore. The run/walk will be concluded with the ever popular tailgate party on the Clemente Bridge. We will once again be joined by our honorary Co-Chairs: Pirates player Craig Wilson, WTAE Sports anchor Andrew Stockey, WDVE Morning Show host Jimmy Krenn and Pirates mascot the Pirate Parrot.

■ Jacob MacLean with dad David MacLean at the 2003 Pirates Run/Walk to benefit EFWCP.

■ EFWCP Board Member Joyce Bender (center) congratulates Team Emily! interaction Page 5 for Epilepsy

■ The Campagne Family took on a prominent leadership role for the 2003 Erie Run. Left to right: Charles Campagne, Judy Painter, Paul Campagne and Nancy Campagne. Erie Mark your calendars for the 2nd Annual SeaWolves Family Fun Run/Walk on Saturday, July 10, 2004. This 5k run/2 mile walk will lead you through the streets of Erie to the finish line in center field of Jerry Uht Park! Following the run/walk, participants are invited to relax and enjoy the sounds of Star 104 at the infamous tailgate party. Join mascot Erie C. Wolf and EFWCP supporters for a morning of "fun"draising! ■ The picnic area next to Jerry Uht Park provides an outstanding area for our SeaWolves tailgate party.

■ Senators Booster Club members manned several different volunteer posts the day of the event.

■ Bubba’s Crew with the Senators Rascal

Harrisburg Step up to the plate and help the EFWCP hit a homerun for epilepsy! Summer may be coming to an end but the FUN You can register to be a part of the Family Fun Run/Walk events as an individual, is just beginning! The EFWCP will once again Team Captain or a Team Member by calling Colleen Kaufman or Kristin Lesker at join the Harrisburg Senators for the 2nd Annual Senators Family Fun Run/Walk on Saturday, 1-800-361-5885. This year the EFWCP has gone high tech to try and help folks raise August 14, 2004. This 5k run/2 mile walk will money for the annual run/walk events. "We’re online now," said Judy Painter, EFWCP take you on a scenic tour of Harrisburg around Executive Director. "Many of our team captains asked us to provide them with a link beautiful City Island and across the Walnut Street Bridge. We will then feed our fundraising hunger where family and friends can make secure online donations to them and their teams." at the tailgate party in the Carousel Pavilion. Visit the new EFWCP website at www.efwp.org to check out the new online Local celebrities and the Senators mascot, the donation option and other convenient web-based event tools. Online registration and Rascal, will be in attendance to help you "Make Every Step Count." event announcements are just a few of the new tools available online. Page 6 interaction Thinking Summer Camp? Think Camp Frog 2004 Pre-registration is July 11-17, 2004 ✹ Camp Fitch Along the Shores of Lake Erie available online at Camp Frog is a great way to connect with old into an existing summer camp program, allowing www.efwp.org friends, make new friends and give Mom & Dad a children who experience seizures to enjoy break. There’s an summer camp just like astounding array of their peers. The activities to make your EFWCP provides will be available on-site during the entire week experience a memorable counselors in the of camp. This medical staff also supervises one, test your skill and cabins along with the medication administration and any seizure- spark your creativity. Camp Fitch staff. All related medical care required by our campers. With activities including camp staff will be Registration is easy and financial help is archery, horseback fully trained by the available for those who may not be able to afford riding, a 4-story rock EFWCP. Our the registration fees. For additional information, climbing tower, sand counselors provide contact Beth Reilly at [email protected] or call volleyball, swimming, seizure recognition 800-361-5885. hiking, arts & crafts, and first aid, build The EFWCP encourages participation by boating, and camp fire confidence, and everyone but if your child has any special needs or sing-a-longs, there’s never a dull moment. provide guidance to campers in a fun-filled requires help with mobility or daily living skills, Camp Frog is a nationally recognized program atmosphere. In addition, a pediatric neurologist please contact Beth Reilly to discuss Camp Frog that places extra supportive and medical services and nurse from Children’s Hospital of Pittsburgh details.

Epilepsy Foundation Western / Central Pennsylvania Calendar of Events

March 5-7 Teen Retreat April 13 Team Captain Party June 2 9th Annual Westmoreland Family Retreat Center Pirates Run/Walk for Epilepsy County Sports Dinner & Auction Mars, PA Pittsburgh, PA Greensburg, PA March 9 Vice Chair Reception April 17 Living Life Without June 8 Team Captain Party Pirates Run/Walk for Epilepsy Compromise – 9th Annual Senators Run/Walk for Epilepsy Pittsburgh, PA Conference on Epilepsy Harrisburg, PA Days Inn Penn State March 21-23 Kids Speak Up Conference June 19 Pirates Family Run/Walk State College, PA Washington, D.C. for Epilepsy April 27 Vice Chair Reception Pittsburgh, PA March 23 Adult Social Group Senators Run/Walk for Epilepsy Life’s Work Building June 22 Adult Social Group — Harrisburg, PA Pittsburgh, PA General Meeting May 13 Adult Group/Education Life’s Work Building March 30 Annual Legislative Breakfast Workshop on Surgery for Pittsburgh, PA Harrisburg, PA Epilepsy July 10 Erie SeaWolves Run/Walk March 31 EFWCP High School Scholarship Dr. James Wilberger for Epilepsy Applications Due Allegheny General Hospital, Erie, PA April 1 Altoona Support Group West Penn Allegheny July 11-17 Camp Frog Bon-Secours Hospital — Health Systems Camp Fitch Kauffman Dining Room May 11 Team Captain Party North Springfield, PA Altoona, PA SeaWolves Run/Walk July 20 Adult Social Group April 1 Vice Chair Reception for Epilepsy Annual Picnic Erie SeaWolves Run/Walk Erie, PA Pittsburgh, PA for Epilepsy May 17 EFWCP High School Erie, PA Scholarship Awards August 14 Senators Run/Walk for Epilepsy Announced Harrisburg, PA

For information or registration on these and other events, please call 412-261-5880 or 1-800-361-5885. interaction Page 7 Living Life Without Compromise: 9th Annual Conference on Epilepsy

DATE: April 17, 2004 ■ LOCATION: Days Inn Penn State

9:00 – 9:30a.m. Registration/Refreshments 11:15a.m. – 12:30p.m. CONCURRENT 1:45 – 2:00 p.m. BREAK SESSION II 9:30 – 9:50a.m. Welcome/Opening Session 2:00 – 3:00 p.m. CONCURRENT SESSION III WORKSHOP D 10:00 – 11:00a.m. CONCURRENT SESSION I Progress in Epilepsy: Where Have the Past WORKSHOP G 25 Years Taken Us? The Surgical Management of Epilepsy WORKSHOP A Paul H. McCabe, M.D. Joel W. Winer, M.D. IDEA Basics - The Parent Perspective and the Assistant Professor of Neurology Neurosurgeon School’s Perception Director of Adult Epilepsy Program York Neurological Associates Carl P. Beard, Esq. Penn State Milton S. Hershey Medical Center Andrews & Beard Information about surgical treatment options, A discussion of the differences between older and including Vagus Nerve Stimulation (VNS) therapy. Charles W. Jelley, Esq. newer anti-seizure medications, as well as the Tremba & Jelley response rate patients can expect for various WORKSHOP H pharmacological treatments. A discussion of a student’s rights and a school’s Pediatric Epilepsy Syndromes responsibilities under the Individuals with WORKSHOP E Todd Barron, M.D. Disabilities Education Act (IDEA) provisions. Wellspan Neurology Life Beyond Seizures WORKSHOP B Ann M. McDonald, M.D. An overview of childhood epilepsy syndromes. Women and Epilepsy Psychiatrist WORKSHOP I Nancy C. Michel, PA-C An exploration of both the unique challenges people Looking Ahead: Transition Planning and Physician Assistant with epilepsy may face and successful strategies College Preparation Adult Epilepsy Program they can use to lead an uncompromised life. Penn State Milton S. Hershey Medical Center Jeff Holter WORKSHOP F Transition Consultant An overview of issues related to women who have Central Intermediate Unit epilepsy/seizure disorders. What Psychological Testing Can Tell You About Your Child’s Learning Lynnett Van Slyke, CRC Director, Disability Resources and Services WORKSHOP C Rebecca Weigers, Ph.D. University of Pittsburgh Finding Health Insurance in Pennsylvania Arbor Clinical/Neuropsychological Associates An exploration of a student’s rights when planning M. Francesca Chervenak, Managing Attorney An explanation of the various psychological tests for life beyond high school graduation, and the Pennsylvania Health Law Project used in the development of a student’s Individualized steps a family should expect to take as they look to Education Plan (IEP) and how a school uses those Learn more about public health programs like the young person’s future. results to create supportive accommodations and Medical Assistance for Workers with Disabilities, modifications in the classroom. Medicare, and adultBasic, as well as options for 3:00 – 4:00 p.m. Ice Cream Social prescription drug coverage. 12:30 – 1:45 p.m. Lunch/Keynote Address Victory Laps: Going the 11:00 – 11:15a.m. BREAK Distance for Epilepsy Awareness Mr. John O’Grady Page 8 interaction

Living Life Without Compromise: 9th Annual Conference on Epilepsy EMPOWERMENT...UNEQUALLED COMMITMENT... Registration Information INNOVATION...INDIVIDUALITY Please complete this registration form and return it with continued from page 1 payment by April 9, 2004, to: Kathi Finch, EFWCP, 1323 Forbes Avenue, Suite 102, Pittsburgh, PA 15219, OR visit www.efwp.org to register online. Make checks payable to the Epilepsy Foundation Western/Central Pennsylvania.

Name:

Address:

City: State: Zip:

Daytime Phone: [ ]

Home Phone: [ ]

■ Individual Registration: $10.00 ■ Family Registration: $25.00

■ Please check here if you would like to receive five hours of Act 48 credits. Among the other new features available on “We continually strive to be more available to the revamped website is an extensive Discussion everyone and the new website begins to make this Board where folks can post questions, make possible. The site provides folks with immediate Workshop Selections comments or read what others have to say about access to some of the information they need and Please select one workshop for each of the three sessions topics and issues. The Discussion Boards are lots of ways to connect with our events, programs listed below. separated into a variety of forums, including and services,” said Painter. “We hope that folks message boards for Parents, Teens, Adults or Kids. will visit us at www.efwp.org and let us know SESSION I: Select One Workshop Read what other folks are thinking or start your what they think about the new look and format for ■ Workshop A: IDEA Basics - The Parent Perspective own conversation thread about a particular topic. our new site.” and the School’s Perception ■ Workshop B: Women and Epilepsy ■ Workshop C: Finding Health Insurance in Pennsylvania Life Without Compromise continued from page 1 SESSION II: Select One Workshop frustration into dedication. John chose to dedicate ■ Workshop D: Progress in Epilepsy: Where Have the himself to raising awareness about epilepsy. Past 25 Years Taken Us? "It’s become my passion and purpose to educate ■ Workshop E: Life Beyond Seizures as many people as possible about epilepsy," says John, who was grounded from flying because of his ■ Workshop F: What Psychological Testing Can Tell seizures. "My seizures are triggered by stress, sleep You About Your Child’s Learning deprivation, and strobe lights. I got involved with the Epilepsy Foundation Western Ohio as a SESSION III: Select One Workshop volunteer, and was amazed by the lack of awareness ■ Workshop G: The Surgical Management of Epilepsy out there." Now, John is trying to change life for millions of others affected by epilepsy. ■ Workshop H: Pediatric Epilepsy Syndromes John raises money and awareness about ■ Workshop I: Looking Ahead: Transition Planning epilepsy by riding his recumbent Optima Lynx and College Preparation bicycle on what he calls EARTH (Epilepsy Awareness Ride to Health) Rides. In 2003, John made a 1600 mile trip on his bicycle beginning in Rochester, New York and ending in Orlando, said O’Grady. "I want to teach them the proper Child Care Services Florida at the Epilepsy Foundation National way to handle it, and to let them know that there is Pre-registration is required in order to use childcare Conference. Along the way, John stopped in help out there across the country through their services. Will you need on-site child care at the various communities to work with local Epilepsy local Epilepsy Foundations." conference? Foundation affiliates, including the EFWCP. On Pages 7 and 8 of this newsletter outline this ■ Yes ■ No August 29, John visited Erie and took time out to year’s schedule of workshops and the legal or speak at a local luncheon. medical experts who will serve as the faculty for EFWCP will contact you prior to the conference to "I’ve found that most people just do not know the conference. Visit www.efwp.org for online discuss your child’s interests and needs. what to do if they see someone having a seizure," conference registration.