A Quarterly Publication of the Epilepsy Foundation Western/Central Pennsylvania interaction 2005 Spring Edition 1323 Forbes Avenue, Suite 102 • , PA 15219 • 412-261-5880 • 1-800-361-5885 www.efwp.org

Saturday, June 4 Make Every Step Count! 3rd Annual Erie SeaWolves Fun Run/Walk Join the EFWCP for a Fun Run/Walk Jerry Uht Park, Erie Registration begins 8:30 a.m. The EFWCP is gearing up for a summer eligible for great prizes, including a Race begins 9:30 a.m. of family fun with its three Fun Run/Walks. ticket to a baseball game, a T-shirt, and Held in Erie, Pittsburgh and much, much more. Top Harrisburg in collaboration with fundraisers in each city earn Saturday, June 11 each city’s local professional corporate boxes to 17th Annual Pittsburgh Pirates baseball team, the Fun baseball games, Spring Fun Run/Walk Run/Walks are events that Training getaways, and PNC Park, Pittsburgh bring each community other fabulous prizes. Registration begins 8 a.m. together to raise epilepsy Teams can now build Race begins 9:30 a.m. awareness in a family- their own website to friendly environment. Runners and walkers gather promote their fundraising efforts. Visit pledges from friends, family members and co- www.epilepsyfoundationrunwalk.kintera.org to Saturday, August 20 workers, then join local radio and TV learn how! 3rd Annual Harrisburg Senators personalities, star baseball players, and team Call 1-800-361-5885 or visit www.efwp.org to Fun Run/Walk mascots for a 5k run/2 mile walk. A tasty tailgate register for your local Fun Run/Walk, and come City Island, Harrisburg party follows the race. join the EFWCP as we “Make Every Step Count” Registration begins 8:30 a.m. Everyone who participates in the event is to raise epilepsy awareness! Race begins 9:30 a.m. Steeler Alan Faneca Joins Saturday Spring Spectacular! Saturday Spring Spectacular ■ May 21, 2005 ■ 9:30 a.m. – 3 p.m. CCAC Boyce Campus gym, 595 Beatty Road, Monroeville, PA 15146

Join the Epilepsy Foundation Western/Central Pennsylvania the Harlem Wizards basketball team, will join the festivities (EFWCP) for a fun-filled day the whole family can enjoy – and demonstrate amazing basketball handling moves. Adults the Saturday Spring Spectacular! Meet Steelers great Alan can attend a series of workshops held throughout the day on a Faneca as he signs autographs and speaks about his support of variety of epilepsy-related topics. people with epilepsy. Kids of all ages can play games, create Call 412-261-5880, email [email protected], or visit artwork masterpieces, and have a blast on the giant inflatable www.efwp.org for more information or to register. Join us for Super Slide and Bungee Ball. Mighty Mike Simmel, star of a day of fun and friendship! ■ Alan Faneca

insideinteraction Non-Profit Org. U.S. Postage Paid ■ From the Executive Director | page 2 Pittsburgh, PA ■ Going the Distance | page 3 Permit No. 1390 ■ Let the Good Times Roll! | pages 4 & 5 ■ Harrisburg Educational Events | page 6 1323 Forbes Avenue • Suite 102 Pittsburgh, PA 15219 ■ New Office Ready for Business | page 6 Services delivered by the Epilepsy Foundation Western/Central Pennsylvania are supported by the Pennsylvania Department of Health 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. Johnstown Open House a Success | page 6 The Pennsylvania Department of Health is an equal opportunity provider of grants, contracts, services and employment. ■ Workplace Disclosure | page 7 ■ Calendar of Events | page 8

RETURN SERVICE REQUESTED Page 2 interaction interaction Page 3 From the Executive Director’s Desk… Dear Friends, ■ Georgieann Nissley, owner ■ The Leukemia & Lymphoma Society Team in Training “Running for of G & G Dance Studio in Allie” team. They ran under team captain Mike Thompson (fourth Statistics tell us that 1 out of every 100 people develops epilepsy Middletown, is rehearsing with Western PA Office: person in second row with white baseball cap), a fellow teacher of ■ ■ Tyler and Christian Roberts with their Lenny Speck, Dawn Clark and Amy Morgan Allie Little for the annual dance Kevin’s in the Middletown Area School District, to raise money and mom Stacey Frost, all of Middletown. 1323 Forbes Avenue, Suite 102, at some point in their lives. But statistics don’t give you the full of Funck’s Family Restaurant of Palmyra. They recital. Georgieann had over awareness for epilepsy. These two little boys saved almost $500 of Pittsburgh, PA 15219, 1-800-361-5885, had the jar by the register to collect funds. 25 dancers and family their own allowance money and donated it ■ Judith K. Painter Lenny also walked in the Fun Run with his wife members in the fun run. Phone 412-261-5880, Fax 412-261-5361, impact that epilepsy can have on a person’s life. Martha Speck, a former teacher of Allie’s and a to the EFWCP in Allie’s name. http://www.efwp.org, [email protected], current teacher of Garrett’s. TDD EOP/AUX AID 1-800-855-2880 When Allie started having seizures at age 3, the life of her family Central PA Office: turned upside down. Her parents now take turns sitting up with her each night, since she has 900 South Arlington Avenue, Suite 126 Harrisburg, PA 17109, 1-800-336-0301 seizures in her sleep. Her younger brother works with her every day to help her learn her Phone 717-541-0301, Fax 717-541-1202 letters, colors, and numbers, because Allie has a developmental delay as a result of the Northwest PA Office: Going the Distance 915 State Street, Suite 101, Erie, PA 16501 epilepsy. Phone 814-451-1135, Fax 814-451-1150 Kylee developed her epilepsy when she was 13. Like any teenager, she just wanted to fit When Alexandra Little was diagnosed with can help change that.” Kevin South Central PA Office: intractable (uncontrolled) epilepsy at the age of 4, has spent many hours with 1450 Scalp Avenue, Suite 1150, in and make the most of her high school years. Her school district had other ideas. Because Johnstown, PA 15904, Phone 814-262-7494 her parents vowed to do whatever they could to Gretchen Knaub, Regional of their fear and misunderstanding about epilepsy, they had Kylee homeschooled for 2 years make sure that another family didn’t have to Coordinator of the Central PA POLICY BOARD BOARD OF GOVERNORS experience the same struggle. office, teaching classes at Allie’s Louis Testoni Douglas Dick – 2 years where she didn’t go to class with her friends, audition for the school play, or go President Steve Morris After discovering the EFWCP through its school and lobbying on Capitol Rich Ryan out for the track team. website on the internet, Laura and Kevin Little Hill in Harrisburg. The Patriot-News Michael Fernandez, Sharon Aulicino ADVISORY BOARD Dick Barton 52 year-old Harry has had seizures for most of his life. When he had a seizure on a threw themselves wholeheartedly into raising The Littles’ story is both Barbara Johanson Joyce Bender epilepsy awareness. As Kevin states, “Epilepsy is heartbreaking and inspirational. Bobbie Martha Louis Catalano, M.D. Pittsburgh city bus, the police were called. After Harry has a seizure, it takes him a long C. James Parks something that you don’t go through, but rather Alexandra is now 7 years old, Tom Chakurda Ronald Rohm James D. Chiafullo time to regain consciousness and become responsive to those around him. The police didn’t you grow through.” Laura added, “We want to help but because of developmental James Valeriano, M.D. Patricia Crumrine, M.D. George Whitmer understand what was happening and arrested Harry, even though the seizure made Harry get the word out about epilepsy so that people delays caused by her epilepsy, Eugene DeFrank understand what it is and understand what they can she has fallen behind her peers. Steve Greenberg PROFESSIONAL unaware of what he was doing and made him unable to control his actions. ■ Garrett, Alexandra, Kevin and Laura Little. George Harakal ADVISORY BOARD do to help during a seizure. There is still so much Allie’s younger brother Garrett, Scott Heeter David Adelson, M.D. Allie, Kylee, and Harry are just some of the thousands of people living with epilepsy misinformation out there, and we believe that we 5, works tirelessly to help his John Hinds Jill Bischoff, CRNP big sister with her academics. “Garrett will sit for “People collected money in cans at Allie’s dance Lawrence Leventon, Esq. Jane Breck, M.D. who turn to the EFWCP for support. We need your help to make sure that we can continue Edward J. Little Richard Brenner, M.D. hours working with Allie to help her learn her recital,” Laura said. “Georgieann Nissley, G & G Denis McCarthy Patricia Crumrine, M.D. to provide the crucial programs and services that they need. This summer, we need your letters, numbers and colors,” said Laura. “He’s so Studio owner, put a write-up in the recital program Theresa MacLean Anne C. VanCott, M.D. Grant Mellon Imad Jarjour, M.D. support of your local Fun Run/Walk for Epilepsy. patient, and he’s the best cheerleader for her. He about what Allie was dealing with and why people Robert Moorehead Kevin Kelly, M.D. greets her every morning by saying ‘Hello, should help. The dancers stood at the doors with Paul Nemiroff, Ph.D., Carol Lane The Fun Run/Walks are wonderful events that bring whole communities together. Like beautiful girl!’ as she comes down the stairs.” M.D., F.A.C.S. William McGhee, Pharm. D. cans and collected money – and then later the James H. Norris, Esq. Don Middleton, M.D. the Littles in Harrisburg (see page 3), many people recruit support from neighbors, friends, Because Allie’s seizures happen while she’s dancers walked in the Fun Run/Walk while Donn Patton Fran Meyers, DO sleeping, Kevin and Laura take shifts with her wearing t-shirts with a photo of Allie wearing her Peter Rockwell Mark Scheuer, M.D. co-workers and family members. This is team-building in the truest sense: people from dif- Thomas Trimm, Esq. James Valeriano, M.D. every night. “We have TV and sound monitors dance costume. The efforts of Georgieann and her Karin A. Vanek Rajiv Varma, M.D. ferent backgrounds and with different experiences, all joining together to make a positive installed in her bedroom, so we know immediately dancers raised $1,400 for the EFWCP.” difference in the lives of thousands of western and central Pennsylvanians. if she starts to have a seizure,” Laura said. Tender Years daycare centers held bake sales STAFF And team-building can be so much fun. Get creative with your fundraising ideas! The When the family learned about the Harrisburg and sold red flames, the EFWCP logo, and by the Judith K. Painter Colleen K. Kaufman Senators Family Fun Run/Walk for Epilepsy, they time the Fun Run/Walk rolled around, the lobbies Executive Director Special Events ■ Allie Little with WINK-104’s Kelly Iris at last year’s Senators Fun Coordinator more fun you have, the more people you’ll get involved and the more money you’ll raise. Run/Walk. decided that the event would be a great way to not of the centers were seas of red. One of Allie’s Peggy Beem-Jelley Associate Director Lynne Gensamer The Fun Run/Walks themselves also give you and your supporters a chance to get together only raise awareness of epilepsy in their teachers even raffled some of her own handmade Financial and Benefits Kathi Finch Administrator community, but also to raise funds to support the quilts to raise funds! Aztech Hair Designs Director of and have a great time. You can spend a beautiful summer morning walking together, enjoy- Communications Gretchen Knaub EFWCP’s services. So, they began sharing their collected money in a jar at the counter that had a Regional Coordinator, ing the tailgate party, and meeting local celebrities. “We need to get people story with members of their community – the picture of Allie on it. “Vicki Fetterhoff, the salon Devin Baldwin Central PA Education teachers at Allie’s and Garrett’s daycare centers, owner, said she did it because she wanted to teach Coordinator Susan Edmonds So make your local Fun Run/Walk for Epilepsy a part of your summer. You’ll have a Regional Coordinator, fired up,” said Laura. “There the dancers and instructors at Allie’s dance studio, her own children about giving back to the Francine Eden Northwest PA Adult Services great time with your friends and family, all while raising epilepsy awareness and the critical the local restaurant, the neighborhood hair salon, community,” Laura said. Vicki even recruited Coordinator Carolyn Guerriero Regional Coordinator, financial support the EFWCP needs. Bring your community together to help people with are so many people whose the employees of Middletown Area School District some of her clients to participate in the walk. Beth Reilly South Central PA Children & Family epilepsy live life without compromise. – and asked their friends and neighbors to join Vicki’s team raised over $4,000. Services Coordinator Becky Bollen lives are touched by them in raising money for the Fun Run/Walk. The Littles plan on doing more of the same this Central PA Kristin Lesker Eisel Receptionist/Secretary Best wishes, The response was overwhelming. Because of Special Events year. “We need to get people fired up,” said Laura. Coordinator Judith K. Painter epilepsy, and we can raise their efforts, more than 150 people came to the “There are so many people whose lives are event to support Allie and the EFWCP. “We had touched by epilepsy, and we can raise even more Interaction is published quarterly by the Epilepsy Executive Director 10 teams of walkers last year, and we hope to have money for more services and more research if we Foundation Western/Central Pennsylvania (EFWCP). We even more money for more welcome your feedback. Questions, comments, letters to even more this year,” said Laura. “Our goal is to all work together.” Kevin then added, “To all of the editor, story ideas, articles, poems, photography or art raise at least $20,000.” In 2004, all of the teams the people who have supported our daughter, the submissions should be addressed to Interaction Editor, c/o services and more research EFWCP, 1323 Forbes Avenue, Suite 102, Pittsburgh, PA associated with the Littles raised a combined total millions like her, and the efforts of the EFWCP, we 15219; 1-800-361-5885, (412) 261-5880, (412) 261-5361 of over $17,000. And the donations came in from thank you – truly.” (Fax), www.efwp.org or for the hearing impaired TDD if we all work together.” EOP/AUX AID 1-800-855-2880. some surprising and imaginative fundraisers. Page 4 interaction interaction Page 5

A. Martini & Co., Inc. AAA East Central Abbott Laboratories A.C. Dellovade, Inc. AON Corporation LetLet thethe GoodGood TimesTimes RollRoll Richard P. Anton and Bonnie B. Astorino Anton Bender Consulting Services, Inc. Burns, White & Hickton 11th Annual Babst, Calland, Clements & Carnegie Mellon University Zomnir, P.C. CB Richard Ellis/ Pittsburgh Mardi Gras Buchanan Ingersoll, P.C. Children’s Hospital of Pittsburgh, Neurology Children’s Hospital of Pittsburgh the Most Citizens Bank Cohen & Grigsby, P.C. Cohen & Grigsby, P.C. Deloitte & Touche Successful Ever Dick Corporation Consumers Produce Company Easley & Rivers Inc. Eat’n Park Hospitality Group ore than 800 revelers crowded the Cyberonics grand ballroom of the Westin Federal Home Loan Bank of Pittsburgh Convention Center Pittsburgh on Fat Davies Veenis & Associates Federal Home Loan Bank of Pittsburgh Tuesday, February 8th, to celebrate the Dickie, McCamey & Chilcote, P.C. Freyvogel Communications M11th Annual Mardi Gras Gala and honor King and ■ Kathy and EFWCP Board President Louis Testoni. , Inc. Queen Hoddy & Mary Anne Hanna. Partiers were Dietrich Industries surrounded by more than 6,500 green, gold and Greater PA Regional Council of Carpenters purple balloons as they entered the hotel, Eckert Seamans Cherin & Howard Hanna Real Estate Services transporting them from the cold Pittsburgh streets Mellott, LLC H.J. Company to swingin’ Bourbon Street in The Big Easy. A Jewish Healthcare Foundation Dixieland band, jugglers, magicians and stilt- Ernst & Young walkers amazed the crowd, and everyone had fun , Inc. dressing up in masks, beads, crowns and feather Fannie Mae Klett, Rooney, Lieber & Schorling P.C. boas. Kurt J. Lesker Co. Gateway Bank Jeff and Nancy Leininger Heeter Printing Company Lovett Bookman Harmon Marks LLP MARC USA Hefren Tillotson McKamish, Inc.

■ Master of Ceremonies Jim Roddey with Drs. Loren and Ellen Roth. Mine Saftey Appliances Co. King and Queen , Inc. Monroeville Chrysler Jeep Hoddy and Mary Anne Howard Hanna Real Estate Services Mylan Bertek Hanna Howard Hanna Real Estate Services National City Bank ■ Hoby, Hoddy, Mary Anne and Duffy Hanna. Dinner Chairs Tricia and Bill Klassing Northwestern Mutual Financial Network Robert and Bonnie Cindrich Corporation KPMG Co.

Ralph and Ruth Anne Papa Sponsors Table PDG Environmental William and Helana ■ King and Queen Hoddy and Mary Anne Hanna lead the parade LandAmerica Financial Group, Inc. into the ballroom. P.J. Dick Inc./ Trumbull Corporation Pietragallo Lawyers Title and Common Pepper Hamilton The party really got started when Mr. and Mrs. Alan and Pat Siger Wealth Land Title Pfizer Neuroscience Hanna made their grand entrance through the front Treasurer door of a wooden playhouse donated by the Corporation POERIO Incorporated Carpenters J.A.T.C. and proclaimed, “Let the good Ralph A. Falbo, Inc. Howard and Janet times roll!” The house was raffled off to a lucky Pietragallo, Bosick & Gordon Schneider Downs & Co. Inc. Slaughter ■ ■ Robert and Bonnie Cindrich Ralph and Ruth Anne Papa party-goer, and then dinner and dancing to the Sky Bank John Parker Band lasted late into the night in true Reed Smith LLP Mardi Gras fashion. Soffer Organization Louis Testoni, EFWCP Board President and , Inc. The Hillman Company Mardi Gras reveler, said, “The event this year was United States Steel Corporation Thorp, Reed & Armstrong, LLP truly spectacular. Because of the hard work of our Thorp, Reed & Armstrong, LLP dedicated board, wonderful staff and fantastic University of Pittsburgh volunteers, this year’s Mardi Gras Gala raised University of Pittsburgh, Department of $325,000 – our most successful event ever!” University of Pittsburgh Neurological Surgery Medical Center University of Pittsburgh Medical Center Urish Popeck & Company LLC UPMC North Hills Passavant West Penn Allegheny Health System ■ William and Helana Pietragallo ■ Alan and Pat Siger ■ Howard and Janet Slaughter ■ EFWCP Board Member Ed Little provides guest vocals for the John Parker Band. King’s Court Sponsors King’s Page 6 interaction interaction Page 7 To Disclose or Not: Harrisburg Can You Afford to Bring Your Epilepsy to Work? By Regina Reid Educational Reprinted with permission from EpilepsyUSA Fighting the stigmas associated with epilepsy their track record as an employee, and hope a their departments because of his seizures, can be one of the toughest challenges of dealing seizure doesn’t occur before they reach that assuming his epilepsy would compromise his Events with the disorder, especially in the workplace. comfort level. ability to do the job. What conclusions will your employer or Kara, who lives in northern Virginia, never Christine from New York City agrees that, The EFWCP hosted three educational potential employer draw if you disclose your considered keeping her epilepsy a secret from her unfortunately, honesty isn’t necessarily the best events in Central PA in March and April. condition? Will he or she be afraid to hire you or employers. She feels she has nothing to hide. policy. The first event, held on March 15 in think you don’t have the mental capacity to do the “My seizures are well-managed,” she said, “but “Few of us have the time to wait to find a job? Will your co-workers be uncomfortable I do have a breakthrough now and then.” She sympathetic employer,” she said. “We are looking Danville, focused on treatment-resistant around you? You don’t want to appear ashamed of disclosed her epilepsy up front and worked for the out for ourselves here.” epilepsy, available treatment options, and ■ Mona Baran talks with families at the Danville event. a medical condition you can’t control, but you company for 20 years. Vagus Nerve Stimulation (VNS) therapy. don’t want to be unfairly judged because of it. “Disclosing up front is an employer screening Revealing May Educate Mona Baran, MSN, Geisinger Neurology, was Hershey Medical Center; Mark Jeannette from Arroyo from PennDOT; and Judy Pena from This thin line is particularly harder to walk for process for me,” she said. “If an employer didn’t Those who choose not to disclose at all are the featured speaker. PennDOT; and Joseph DeLellis from the the Office of Vocational Rehabilitation. the employee whose seizures are well-controlled want to hire me because of epilepsy, I wouldn’t generally those who have achieved very good Families in the Camp Hill area joined Office of Vocational Rehabilitation. “We had a great series of events,” said and for whom the chances of having a seizure at want to work for them, anyway. control of their seizures. They feel that if a seizure EFWCP staff and a panel of experts on April On April 27, families from the York area Regional Coordinator Gretchen Knaub. “I’d work are slim. That person must weigh whether or “It also allows me to feel secure in the is not likely to happen on the job, then no one 20th to get answers to their questions about attended a similar event where they could ask like to thank Cyberonics for sponsoring each not the risk of disclosure and the potential prejudice knowledge that my peers will act appropriately needs to know about their condition. treatment options, driving regulations and it may bring is greater than the risk of having a should I have a seizure.” Even still, there are individuals who chose to the experts their questions directly. Panelists event and all of our speakers for taking the seizure that would come as a surprise to co-workers. When moving to a new job, Kara did tell her co- employment issues. Panelists included Dr. included Dr. Allen Tyler and Kim Green, time to share their expertise with our “come out” about having epilepsy as a means of While there are laws to govern an employer’s workers about her seizures, “but for some reason,” educating others about the disorder. Paul McCabe and Cathy McNew, CRNP, from CRNP, from Wellspan Neurology; Diosado constituents.” actions, no amount of laws can govern attitude. she said,” I didn’t tell my supervisor until necessary.” Tom from Wilkes-Barre, Pa. feels people with Employers don’t have the legal right to ask if you The issue of driving the company vehicle was epilepsy can be of assistance to those they work have epilepsy during an interview, although some raised, and she told her boss that while she had with by disclosing their seizure disorder in an potential employees chose to voluntarily broach seizures that were controlled, her license was appropriate manner. the topic at this early stage. Despite the laws, restricted and periodically reviewed by the DMV. “Sometimes our co-workers could use a New Office Ready for Business however, many people with epilepsy fear the laws “The response was, ‘if the state allows you to little educating,” he said. He prefers to disclose won’t keep employers or others in the workplace drive then that’s okay with me,’” she said. only after he has “established a track record for The EFWCP is very pleased to Regional Coordinator Carolyn Guerriero to Carolyn. “I’m planning on scheduling a from making judgments about their abilities once Michelle of Cuyahoga Falls, Ohio advocates being a good worker and a generally all-around announce the opening of its newest address a wide variety of epilepsy-related variety of events this year, including their condition is made known. always telling your supervisor and co-workers of nice guy.” Even then, he said, it is a casual office. The Johnstown office, issues they may be facing. Carolyn is also support group meetings in Johnstown and your condition. All of them. reference and “only under circumstances where I Safety Concerns “Even though I’d told my boss when she hired can be neutral about it.” located in the John P. Murtha available to provide free seizure Altoona, as well as a family picnic this me, the assistant manager on shift one day didn’t Neuroscience and Pain Institute, recognition and first aid training to any summer.” Anyone interested in contacting The kind of seizure generally experienced “After I’ve been around and people get to know factors into the decision of disclosure. A person know I had epilepsy,” she said, “and I had a grand me, I will put on my Medic Alert bracelet in the joins the existing EFWCP offices in school or community organization that Carolyn may do so by calling 814-262- having a complex partial seizure at his or her desk mal while I was at work. I worked at a clothing outer office in front of others,” Tom said. “When Pittsburgh, Harrisburg and Erie. Families requests a Project School Alert 7494, emailing [email protected], or may be able to do so without great disruption. But store and was folding men’s sweaters on a metal someone asks me if I have diabetes (which is the and individuals affected by epilepsy in presentation. visiting the office at 1450 Scalp Avenue, the employee who has tonic-clonic seizures may table when I had the seizure. usual scenario), I tell them I have epilepsy, but it’s Johnstown and surrounding communities “I’m very excited to be working with Suite 1150. want others to be aware. “The assistant manager was on break and a co- controlled and I wear a bracelet because it’s a now have the opportunity to work with families in the Johnstown area,” said Another major consideration regarding worker had to run to find her. I woke up good idea. disclosure is the job itself. What kind of work is it embarrassed with firemen and ambulance “One of two things will happen. Either they will and in what environment? Will yours or someone personnel around me. A customer said she had to express fear that I will have a seizure in front of else’s safety be in jeopardy if you had a seizure give me mouth to mouth because I stopped them, which I play down, or they will tell me that while performing your job and no one knew of breathing. You may have your seizures under a friend or relative also has seizures. If they are your condition beforehand? control now, but you never know when one can fearful,” he said, “I tell them my seizures are Employees in office or retail settings may not sneak up on you.” controlled with medication, which tends to make Johnstown Open House a Success necessarily have the same degree of concern me tired. I also mention that most seizures are not regarding physical safety as others who work in Disclosure Equals Discrimination? medical emergencies, although they often look The EFWCP hosted an open house for chance to learn more about the EFWCP’s hospitals or factories, but that doesn’t make the There are some who feel that if your seizures pretty dramatic.” community members on Wednesday, March 23 services, get to know EFWCP staff, and talk issue of disclosure any less important. are well-controlled, telling your employer about at the John P. Murtha Neuroscience and Pain with one another. your condition only subjects you to possible No One Answer differential treatment. Institute in Johnstown. More than 25 people A special thank you to Jack Bruni, Ortho- What’s Right for You? Whether starting a new job or newly diagnosed There are those who opt not to disclose having “It’s professional suicide,” one worker said. and considering what to do in your current attended the special event, including families McNeil Pharmaceutical, for providing the One employee hadn’t planned on revealing his affected by epilepsy, staff from Exceptional refreshments for the event, and to A.J. Strick, epilepsy until and unless a seizure occurs, hoping workplace, the issue of disclosure must be to stave off any potential bias until a seizure condition to his employers, but they became aware approached carefully and thoughtfully. Parent magazine, and representatives from Sharon Lehman and Barb Duryea from the necessitates a discussion. Others choose to disclose after he had a number of seizures over several While some have found it liberating to be “out of U.S. Representative John P. Murtha’s and John P. Murtha Neuroscience and Pain up front, immediately eliminating the element of months. Although he has been well-controlled the closet” about epilepsy, others have found State Senator John Wozniak’s offices. WWCP- Institute Research and Development surprise should a seizure occur in the presence of since then, he says he has seen less experienced disclosure to be a professional hardship they’d just as TV and the Tribune-Democrat both covered Department for their invaluable support and co-workers. people be promoted while he has not been. soon not bear. What is right for you will depend on ■ Barbara Duryea, Director of Research and When he asked why, he was told some of the the event, and everyone in attendance had the assistance with all aspects of the evening. Development at the John P. Murtha Neuroscience Still others want to wait until they feel more your degree of control, the demands of your job and and Pain Institute, introduces the EFWCP. secure and comfortable with their employer and potential supervisors were leery of hiring him into your relationship with your supervisors and peers. Page 8 interaction calendar

May 18 Westmoreland County Sports Dinner and Auction Ferrante’s Lakeview, Greensburg May 19 Adult Socialization Group Meeting Life’s Work Building, Pittsburgh May 21 Saturday Spring Spectacular CCAC Boyce Campus, Monroeville May 24 Support Group

vents Palace Business Centres, Erie May 24 Support Group York Hospital, York EFWCP

e May 25 Support Group John P. Murtha Neuroscience and Pain Institute, Johnstown June 4 Erie SeaWolves Fun Run/Walk Jerry Uht Park, Erie June 4 Parent Workshop Life’s Work Building, Pittsburgh June 11 Pittsburgh Pirates Fun Run/Walk PNC Park, Pittsburgh June 14 Support Group PA United Church Center Building, Harrisburg June 23 Adult Socialization Group Meeting Life’s Work Building, Pittsburgh June 30 Support Group York Hospital, York July 10-16 Camp Frog Camp Fitch, Erie July 26 Support Group York Hospital, York August 13 Harrisburg Senators Fun Run/Walk City Island, Harrisburg September 12 Froggy’s Golf Classic South Hills Country Club, Pittsburgh

Education Series on Epilepsy Awareness Epilepsy/Seizure Bracelets are Here! Disorders This series of workshops is for parents whose he EFWCP has epilepsy awareness come to represent political parties, it is a children have received a recent diagnosis of bracelets available for purchase. statement that public policy addressing the epilepsy/seizure disorder. Join us to learn more TThe color blue symbolizes tranquility needs of people with epilepsy is and to get answers to your questions about and represents the hope of people bipartisan. social issues, coping, and other medical with epilepsy for a life free of The bracelets will be conditions like depression, anxiety, and ADHD. stress and the burden of available at the Saturday seizures. Red symbolizes Spring Spectacular and at June 4, 10 a.m. – 12 p.m., Life’s Work Building, change, life-giving all of the Fun Run/Walks 1323 Forbes Avenue, Pittsburgh, PA power, and healing. It for Epilepsy. The cost is is the color of the $1.00 per bracelet. For Presenters: Jamie Wichrowski, CRNP, and Epilepsy Foundation more information or to Caroline Roche, CRNP, Children’s Hospital of flame and represents purchase bracelets, call 1- Pittsburgh; Beth Reilly, EFWCP our mission. In addition, 800-361-5885 or email since red and blue have [email protected]. For more information, contact Beth Reilly at 800-361-5885 or [email protected]