A Quarterly Publication of the Epilepsy Foundation Western/Central Pennsylvania interaction 1323 Forbes Avenue, Suite 102 • Pittsburgh, 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.