Spring/SummerNewsletter 2016 EPILEPSY FOUNDATION · Spring/SummerNewsletter 2016 EPILEPSY...

A B I - Y E A R L Y N E W S L E T T E R O F T H E E P I L E P S Y F O U N D A T I O N W E S T E R N / C E N T R A L P E N N S Y L V A N I A

Spring/Summer Newsletter 2016

EPILEPSY FOUNDATIONWestern/Central Pennsylvania

www.efwp.org

2 Epilepsy Foundation Western/Central Pennsylvania

The Epilepsy Foundation Western/Central Pennsylvania leads the fight tostop seizures, find a cure, and overcomethe challenges created by epilepsy.

1501 Reedsdale StreetSuite 3002

Pittsburgh, PA 15233

412-322-5880800-361-5885

412-322-7885 Fax

Commerce Centre1001 Broad Street

Suite 240Johnstown, PA 15906

814-262-7494814-262-7495 Fax

3507 Market StreetSuite 203

Camp Hill, PA 17011

717-730-6779800-336-0301

717-730-6727 Fax

Visit www.efwp.org

A champagne dress was one of thehighlights at Mardi Gras this year.

Purple ribbons were the theme of aguided painting event in Johnstown.

Sofas Unlimited raised funds and awareness for National Epilepsy Awareness Month inNovember.

Santa visited the Pittsburgh Holiday party.

In This Issue3 A Note from the President

and CEO

4 Spotlight on ... Camp Frog

Upcoming Education Events

5 Spotlight on ... Medication Programs

Reusable Bags

6 Leila’s Story

7 Sharing Your Story

Epilepsy Funding

You Can Make a Difference

8 Mardi Gras

Westmoreland Sports Dinner and Auction

9 Run/Walks

10 Upcoming Events

11 Transition Conference

ON THE COVER: Leila Zorzie, accom-panied by Matt Shields, shared herstory about living with epilepsy at the2016 Mardi Gras Gala. Photo by JohnHeller. Copyright © Pittsburgh Post-Gazette, 2016,all rights reserved. Reprinted by permission.

Spring/Summer 2016 Newsletter • www.efwp.org 3

A Note from the President and CEOWhen people make decisions about you,without your input, you generally don’t getwhat you need or want. How do you makepeople pay attention to what you have to sayso that what you need and what you want tosee happen is taken into consideration? Theanswer is not complex nor is it illusive. It is amatter of self-advocacy – telling your story,because your story matters.

In this issue of our newsletter, we hope to inspire you with examples, tipsand opportunities for you and your family to engage in self-advocacy.Telling your story about epilepsy will help to push forward your personalgoals, and the mission of the Epilepsy Foundation. You’ll read aboutopportunities for teens and young adults to participate in conferences ontransition. Leila Zorzie’s self-advocacy not only helped to increaseawareness of the many issues facing young people growing up withepilepsy, it helped us to raise record making donations during our MardiGras Gala. And, you’ll learn more about how telling your story can helppromote epilepsy awareness within the PA General Assembly andhopefully save our state funded programs all across the Commonwealth.

Still not sure you are ready to tell your story? No need to worry. There’san article on how to go about telling your story and where to turn for help.

Because your story matters.

Because no one knows you betterthan you.

Because your story needs to betold.

Because if you engage in self-advocacy you are more likely toget what you want.

Because in telling your story youare telling the collective story ofepilepsy.

Self-advocacy empowers,enlightens and strengthens usindividually and as an epilepsymovement.

So I ask you, “What’s your story,and who are you going to tell?”

Peggy Beem-JelleyPresident and CEO

EFWCP Board and Staff

Policy BoardDeborah Rice-Johnson

Board Chair

Russ AllenJoyce BenderTheresa Bone

Louis Catalano, M.D.James Chiafullo, Esq.

Patricia Crumrine, M.D.Eugene DeFrank

Scott HeeterJohn Kreider

Mark Kuczinski, CPACarole Lane

Edward LittleTheresa MacLeanSandra McAnallenJames Norris, Esq.Daniel Orie, Esq.

James Valeriano, M.D.

Advisory BoardMiya Asato, M.D.

Jill Bischoff, CRNPPatricia Crumrine, M.D.Kevin Kelly, M.D., PhD

Carol LaneDonald Middleton, M.D.Carol Schramke, PhDJames Valeriano, M.D.Anne VanCott, M.D.Rajiv Varma, M.D.

Emeritus BoardDick Barton

Douglas DickJack Hinds

Lawrence Leventon, Esq.Richard M. Ryan

Thomas Trimm, Esq.

StaffPeggy Beem-JelleyPresident and CEO

Rick BoyleSpecial Projects Director

Brandi BruknerCommunity Services Coordinator

Annette CondeluciDevelopment Officer

Chelsea FallierRegional Coordinator, Johnstown

Colleen FulkersonSpecial Events Coordinator

Lynne GensamerFinancial & Benefits Administrator

Jordan HindsNew Initiatives Coordinator

Gretchen KnaubRegional Director, Capitol Region

Laura NorrisExecutive Office Manager

Francine ReyherAdult Services Coordinator

Amanda SteinChildren & Family Services Coordinator

Laura WoodwardCommunity Education & Events Coordinator,

Capitol Region

Andrea ZonneveldCommunity Education & Events Coordinator

Peggy Grace Lawrence telling her story inWashington DC.


Camp Frog is a nationally-recognized program that placesextra supportive and medicalservices into existing YMCAsummer camp programs. TheEFWCP provides specially trainedcounselors (in addition to YMCAstaff) in the cabins to provideseizure recognition and first aid,build confidence, and provideguidance to campers in a fun-filledatmosphere. A pediatricneurologist and nurse are also on-site the entire week of camp.

While at Camp Frog, children andteens will be able to participate in

exciting activities such ascanoeing, horseback riding, sports,crafts, swimming, and more. Asession of Studio E: The EpilepsyArt Therapy Program was held atthe Camp Fitch location last yearand will likely return in 2016.

Camp Frog has been a part of theEFWCP for over 30 years and has

changed many lives along the way.Campers have made life-longfriends, learned independence,developed interpersonal skills, andflourished into strong young adults.This experience can be positive inso many ways. We encourage youto call us to see if your child orteen is eligible to attend.

Spotlight on … Camp Frog

UpcomingEducation

EventsSchool Nurse Education

WorkshopApril 30, 2016 | Johnstown

Call 814-262-7494 for moreinformation or to register.

Parent WorkshopMay 5, 2016 | Monroeville


Parent WorkshopMay 13, 2016 | Altoona


Parent WorkshopMay 14, 2016 | Camp Hill


Join us for Camp Frog!For more information on your nearest Camp Frog session, pleasecontact your local camp coordinator:

Camp Conrad WeiserWernersville, PAJune 19-25, 2016

Pre-register by April 15, 2016Registration must be completed

by May 20, 2016Contact Gretchen Knaub

at 800-336-0301 or [email protected].

Camp FitchNorth Springfield, PA

July 10-16, 2016

Pre-register by May 2, 2016Registration must be completed

by June 3, 2016Contact Amanda Stein

at 800-361-5885 or [email protected].

SEE YOUAT CAMP!


If you need help paying for yourmedication, an excellent resource iswww.needymeds.org. This websitehas a list of all major prescriptiondrugs, and information on which of the following resources areavailable.

Patient Assistance ProgramsPrescription assistance can be offeredin the way of Patient AssistancePrograms (PAPs), which are createdby pharmaceutical companies toprovide free or discounted medicinesto people who are unable to affordthem. Each program has its ownqualifying criteria.

$4 GenericsThe $4 Generics Drug Program listspharmacy retailers’ prescriptionprograms that offer genericmedications for a discounted price.Many do not necessarily charge $4 fortheir generic drugs, but do have pricesranging from $4-$15 for a 30-day or90-day supply. Ask about the $4Generics Drug Program because it is acommon name for this type of

program. These programs make itpossible for many struggling to payfor their medication to get it.

Some generic drug programs requireenrolling as a member and/or payingan annual membership fee. Others donot require any membershipenrollment. Before enrolling into aprogram, always read the fine print.

Coupons, Rebates and MoreCoupons, Rebates & More lists offersof brand name medicine (over-the-counter and prescription) and medicalsupplies. These offers may be in theform of a printable coupon, rebate,savings card, 7-30 day free trial offers,or free samples. There are a variety ofways to receive the offers. Some maybe printed right from their website,others require registration, filling out aquestionnaire, or even obtaining asample from the doctor’s office.

Copay CardTypically offered by companies thatmake the drugs, copay cards aredesigned to help people with privateinsurance pay for their medications.

The copay card helps to reduce orcover the co-payment required to getmedications at the pharmacy. Eachprogram is different, but many requirea registration process prior topresenting the copay card to thepharmacist. The patient hands thecopay card to the pharmacist whentheir prescription is being filled. Theamount of the copay may be reducedor even covered entirely.

Support PagesSupport Pages offer a link to theproduct website where additionalresources and services can be found.

Spotlight on … Medication Programs

Did you Know?The EFWCP has an EmergencyMedication Assistance program.We can pay for one month ofyour prescription of your anti-epilepsy medication while wehelp you to find a long-termsolution. Contact us to see ifyou are eligible for emergencymedication assistance.

Join the Langford family in honoring thememory of their son, Mason, while raising

money for a great cause!

Registration is open for golfers and tee andgreen sponsors and donors for auction/raffle

items. For more information, contact JoAnn Gusty at 412-508-8472 [email protected]

Registration is OPEN!

Mason LangfordMemorial Golf Outing

May 15, 2016Manor Valley Golf Course

Export, PA


Leila’s Story: I am no longer alone in my journey!Leila Zorzie shared her story of living with epilepsy at the 2016 Mardi Gras Gala. She askedattendees to give generously so other kids living with epilepsy never have to feel alone.

My seizures start with an aura. This is my body’s signal to me that my brain is misfiring and I’m about to have aseizure. Usually, I feel a sickness in my stomach and get dizzy and lightheaded. There’s nothing I can do to stopthe impending seizure; I can only find a place to safely sit on the ground. At that point, I have no control over mybody. I am at the mercy of my malfunctioning brain and must wait until I come out on the other side of myseizure. This is terrifying. To sit there, knowing that I have zero control over my body and will soon wake up from aseizure feeling afraid, exhausted, confused, and with people standing over me with the same feelings, isembarrassing and horrifying. The worst part about this is that few people know this feeling.

Yes, I go to an epileptologist who understands the brain and seizures. I have wonderful family and friends whocare for me in so many ways and do their best to empathize with me. But truly, unless one has felt the loss ofcontrol, the fear of what will happen whenyou’re unconscious, and the disorientingmoments after waking, one does not know howisolating seizures can be.

Then, I went to camp. Not just any camp, butone specifically for kids with Epilepsy. It wascalled Camp Frog and it was the first time Iexperienced being with kids who were living thesame life as I was. At camp, it was normal toneed more rest due to medication side effects.It was okay to eat a special diet or have difficultycompleting activities. Taking medication waspart of everyone’s daily routine. Even having aseizure was part of the norm here. At this camp,I realized that there were others just like me. Iwas cared for by teens and adults who hadEpilepsy and showed me that a “normal” life ispossible, even while navigating the abnormalworld of Epilepsy. These counselors reassuredme that I was safe and helped me navigate mytricky, seizure ridden world.

I had the same experience at Kids Speak Up, a program in which kids from all 50 states flocked to Washington D.C.to advocate for Epilepsy funding and awareness. Kids and adults from all over the country faced the same problemsand wanted to see change. In the words of my 13 year old self, “When you are there, you forget about Epilepsy. Youdon’t feel different because everyone there has Epilepsy. You can talk about it and not worry about what they aregoing to think.” It was that program that helped launch my passion for advocacy and education. I saw how muchof an impact a group of people can really have if we stand together. I still keep in touch with my fellow PA childrepresentative and am thrilled to see another girl with Epilepsy grow up to succeed in her chosen field.

Those experiences, and more, only happened because of the Epilepsy Foundation. Had it not been for thisorganization, I wouldn’t have met so many people like me; meeting these individuals validated all of my feelingsand helped me be at peace with my diagnosis. Seeing so many successful adults ensured that I had the strengthto keep high standards and accomplish my goals.

Some of the people at the Foundation have been with me every step of the way: from my first couple yearsnavigating a new diagnosis, during college, all the way through the completion of my Master’s degree. Thatcontinuity of care is priceless; they remind me that my abnormal circumstances don’t equate to an abnormal life. Ican still live out the plans I have for myself with a little adapting; Epilepsy does not have to limit my success. I cantruly empathize with others on their journey with Epilepsy due to the kindness of those who empathized with me.

Some days, I still feel isolated. But when I recall all of the experiences I’ve been granted, I remember that there arein fact people who know what isolation feels like. I’m no longer alone in my journey. And, I want to ask you to letother kids know that they aren’t alone in their journey. Your donations tonight will allow the Epilepsy Foundationto reach more kids who need to know that they are not alone, who need to realize that there are others who arejust like them, and who need our help to grow up successfully, and achieve their dreams. I hope that you will givetonight, and I hope that you give generously. There is no way for me to put a value on the benefits I received frombeing involved with the Epilepsy Foundation but I can tell you that without their help I would not be at peace withmy diagnosis.

Leila Zorzie and Matt Shields at the Mardi Gras Gala.


Epilepsy has affected your life.Undoubtedly, you have countlessstories that you could share, buthow can you be sure that yourstory will have a lasting impact onthe person you are sharing it with?

WHO?Whether it is your local legislator,your teacher, or a supporter of yourrun/walk team, you should alwaysknow your audience and tell yourstory in a way your audience canunderstand.

WHAT?Focus on the parts of your storythat will make the most impact.You may only have a few minutesto talk or a small amount of spaceto write, so make sure that everyword counts!

WHEN?Share your story with anyone whowill listen! The best way to helpraise epilepsy awareness is to shareyour story so that people can put aface with the diagnosis.

You can make adifference!

We want you to share your story tomake a difference in the lives ofpeople living with epilepsy. Theattached postcards are intended tobe sent to your PA Representativesand State Senators. You can sharewhy it is important to you, theirconstituent, that they continue tosupport epilepsy programs andservices in Pennsylvania.

Follow these simple steps to makeyour voice heard:

1. Fill in the front of the postcardswith the reasons why you supportfunding for epilepsy programs.

2. Look up your Pennsylvania state legislators by visiting:http://tiny.cc/findyourlegislator.

3. Fill out the return addresssection of the postcard.

4. Don’t forget to put a foreverstamp on the postcard!

5. Mail the postcards to your local legislators.

State Funding For epilepSY

Sharing Your Story

HOW TO WRITEYOUR STORY

Start your story by setting the scene.

What was life like before epilepsy came along?

Next, share what is causing/could cause a change.

Who has helped you along the way and how?

Lastly, tell what the listener cando to ensure a happy ending. How do you want your story to

impact your listener?

Next, share the moment that everything changed.

What did an epilepsy diagnosismean for your life?

More than 200,000 Pennsylvanians,18,836 PA school students, and 1 in26 Americans have epilepsy. Ask thePA General Assembly to recognizethe needs of these neighbors, familymembers, co-workers, and friends inour state budget.

State funding for epilepsy serviceshelps to pay for important programslike the EFWCP Project School Alerttraining for school nurses and teachers,training for EMS personnel and FirstResponders, community educationworkshops, parent/family conferences,individual education advocacy, andconsultation for patients and

parents. The state budget also helpsto support staff in all of our officesand keeps the doors of theJohnstown and Camp Hill locationsopen and serving thosecommunities.

The supplemental state budget for2015-2016, H.B. 1801, included$550,000 for the epilepsy servicesline item. Please thank the membersof the General Assembly for makingsure that funding for these importantprograms will continue!

However, our advocacy work mustcontinue. Governor Wolf did not

propose funding for epilepsyprograms in the 2016-2017 budget.The EFWCP is hopeful that throughour continued efforts to makeofficials in Harrisburg understandthe importance of these services, thefinal budget for next year will includefunding in the Department of Healthepilepsy services line item in the2016-2017 budget.

WE NEED YOUR HELP.Thank Harrisburg for their supportthis year, and ask them to includefunding for epilepsy programs in

the 2016-2017 state budget.

Detach postcards at perforations.


The 22nd Annual Mardi Gras Gala was held on Fat Tuesday,February 9th, at The Westin Convention Center Pittsburgh.Morgan O’Brien, President and CEO of Peoples, wascrowned King of the Mardi Gras. Through the support ofour corporate community, and generous individual donors,the event raised over a half million dollars.

The Mardi Gras Gala is a fundraising event that honors acommunity leader for their commitment and dedication tothe Pittsburgh region. The event is traditionally supported bythe corporate community and their pledge to sponsor atable/tables. The event has become one of Pittsburgh’spremier social gatherings and has been sold to capacity sinceits inception. If you would like to confirm your table andcelebrate Fat Tuesday 2017 with the EFWCP, please contactColleen Fulkerson at [email protected] or 412-322-5880.

Westmoreland Sports Dinner and Auction

$25,000 Fleur De Lis Sponsors

$15,000 French Quarter Sponsors

Gateway Health

Giant Eagle

UPMC Health Plan

$10,000 Bourbon StreetSponsors

ATITom and Terri Bone

Covestro LLCEQT Foundation

I.B.E.W. Local Union #5PNC

Range ResourcesTrumbull Corporation/

Lindy Paving

Over 130 people joined chairs Dr.Lou and Diana Catalano at the 20thAnnual Westmoreland SportsDinner and Auction. Floweredprints and flip flops loomed largeat the luau-themed event.

Items for auction included: a one-week stay in Cabo San Lucas,tickets to local sporting events,custom made jewelry, designerhandbags, and much more.

This event raised $35,500 in 2015.

Dr. Lou Catalano was presented with a commemorative photo football in honor of the20th anniversary of this event.

King Morgan O’Brien (second from right) with dinner chairsNigel Hearne, John Paul and Dennis Yablonsky.

Ph

oto

by

Mar

y Ja

ne

Ben

t.

22nd Annual Mardi Gras Gala

Thank You to Our Mardi Gras Sponsors!


Register for Fun Run/Walks!The EFWCP will be involved in 4 walks this summer. Please come out to join us at one or more of these awesomeevents or sign up as a virtual walker to help us raise funds and awareness!

June 4th Erie Highmark Walk for a Healthy Community@ Presque Isle State Park, ErieThis year the EFWCP will be one of 25 organizations participating in the Highmark Walk for a Healthy Community in Erie. Highmark Inc.underwrites the cost of the walk so that 100 percent of the money raised bywalkers goes to the participating organization. Walk in support of the EFWCPand join us for lunch immediately following the walk!

To register for the Erie run/walk, visit www.walkforahealthycommunity.org.

If you participate in any of the four run/walk events that the EFWCP is involved in, you areeligible to win prizes based on the fundraising you do in support of people living with epilepsy.

Don’t forget to check back later this spring on our Facebook page at www.facebook.com/efwcp for the official announcement of this year’s prizes!

June 11th Johnstown Highmark Walk for a Healthy Community@ Central Park, JohnstownThe EFWCP will also be participating as one of 18 organizations in the Highmark Walk for a Healthy Community in Johnstown. Walk in support of the EFWCP and join us for lunch immediately following the walk as our thanks for supporting your friends and neighbors living with epilepsy!

To register for the Johnstown run/walk, visit www.walkforahealthycommunity.org.

July 30th Pittsburgh Family Fun Run/Walk for Epilepsy@ PNC Park, PittsburghOver 1,500 people are expected to gather at PNC Park this summer for the 28th Annual Pittsburgh Family Fun Run/Walk for Epilepsy. Participantswill run a 5K course or enjoy a leisurely 2 mile stroll along the scenic NorthShore Trail. At the end of the course, teams will meet up on the RobertoClemente Bridge for a one-of-a-kind tailgate party!

To register for the Pittsburgh run/walk, visit www.epilepsyrunwalk.kintera.org.

August 6th Harrisburg Senators Family Fun Run/Walk for Epilepsy@ City Island, HarrisburgThis summer, support the people with epilepsy that you know by participating in the 14th Annual Harrisburg Senators Family Fun Run/Walk for Epilepsy. Enjoy a 5K run or 2 mile walk course around the island, followed by a tailgate party in the Carousel Pavilion. This event is hosted by the EFWCP and the Harrisburg Senators.

To register for the Harrisburg run/walk, visit www.epilepsyrunwalk.kintera.org.

Did You

Know?


Upcoming EventsApril 8-10PASNAP ConferenceState College

April 10-12Share Your Story / PAPublic Policy ConferenceHarrisburg

April 12Legislative BreakfastHarrisburg

April 12Adult Primary CareProvider Transition Focus GroupGreensburg

April 15Scholarship WinnersAnnounced

April 17-19Teens Speak Up!Washington, DC

April 30School Nurse WorkshopJohnstown

May 5Parent WorkshopMonroeville

May 13Parent WorkshopAltoona

May 14Parent WorkshopCamp Hill

June 4Highmark Walk for aHealthy CommunityErie

June 11Highmark Walk for aHealthy CommunityJohnstown

June 19-25Camp FrogCamp Conrad Weiser, Wernersville

JulyOscar Recipients meettheir seizure response dog

July 10-16Camp FrogCamp Fitch, North Springfield

July 22-24Transition ConferenceState College

July 3028th Annual Family FunRun/Walk for EpilepsyPNC Park, Pittsburgh

August 614th Harrisburg SenatorsFamily Fun Run/Walk for EpilepsyFNB Field, Harrisburg

September 17Family PicnicPittsburgh

NovemberNational EpilepsyAwareness Month

Support GroupsGreensburg - Parents Group

Next meeting: April 30, 2016

Call Helen at 724-836-6822 for more information.

HersheyFirst Tuesday of each monthNext meeting: May 3, 2016

Call Laura at 800-336-0301 for more information.

JohnstownFirst Tuesday of each month

(except June)

Next meeting: May 3, 2016

Call Chelsea at 814-262-7494 for more information.

YorkFirst Thursday of each month

Next meeting: May 5, 2016

Call Gretchen at 800-336-0301 formore information.

This free event will benefit the Epilepsy Foundation Western/Central PA

through generous donations from festival supporters and audience members

www.monroevillejazz.org

Saturday, August 20, 2016Tall Trees AmphitheaterMonroeville Park

www.monroevillejazz.org


Transition Conference

Kevin Gill, dressed as a tourist, at the luau-themed Westmoreland Sports Dinner andAuction.

Revelers who donated during Mardi Gras received a special shot glass bead.

The Old Stone Bridge in Johnstown, turned purple for Epilepsy awareness.

The EFWCP is hosting a TransitionConference in State College, July 22-24, 2016 for teens and their parents.This is a perfect time for youngadults to begin working on a plan to“transition” to adult life.

Last year’s participants revealed thatthey especially liked the time theyhad to share stories and discuss theirexperiences with one another.

Teen Leadership Summitparticipants, who have had previousinvolvement with the foundation andare developing their leadership skills,met on March 18 and 19 to discusswhat they would like to learn at thisyear’s conference.

This will not be just a “sit and listen”conference. Participants will identifytangible goals to meet, as well asaction steps to take to meet thosegoals. Afterward, the foundation willoffer continuing support to facilitateaction steps, including beingavailable to answer questions,postcard reminders, and newslettersto the group.

Please contact Jordan at 800-361-5885 or [email protected] to learnmore and to be sure you receiveadditional details about this event.

Above: Participants in the 2015 TeenLeadership Summit were responsiblefor helping to select the topics for the2015 Transition Conference. This year,the Teen Leadership Summit was heldon March 18th and 19th.

Right: The 2015 Transition Conferencefocused on healthcare. Both the teenparticipants and their parents wereencouraged to share stories and askquestions as they navigatedtransitioning to adult healthcare.

Non-Profit Org.U.S. Postage

PAIDPittsburgh, PAPermit No. 1390

1501 Reedsdale Street, Suite 3002Pittsburgh, PA 15233

Spring/SummerNewsletter 2016 EPILEPSY FOUNDATION · Spring/SummerNewsletter 2016 EPILEPSY...

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