Executive Director of Epilepsy Alliance Ohio
November 13, 2018 - 2:00pm to 3:00pm

Joyce welcomes Kathy Schrag, executive director of Epilepsy Alliance Ohio to the show. Ms. Schrag will discuss the programs and services of this non-profit organization to help those who are living with epilepsy in Ohio.

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>> Welcome to Disability Matters with your host Joyce Bender.  All comments, views and opinions expressed on this show are solely those of the host, guests and callers.  Now the host of "Disability Matters," here's Joyce Bender.

>> JOYCE BENDER:  Welcome everyone to the show today and we are celebrating epilepsy month.  Every November I try to focus the entire month on talking about epilepsy.  And as you all know, I'm a woman living with epilepsy, so it's very personal to me.  I've spent my life on a crusade for the employment of people with disabilities.  I have a software product out I disability for training, digital accessibility and what is my point?  I have epilepsy and it does not and has not stopped me, nor will it stop me.  So before we get going, hey, a special‑out to Yoshiko Dart.  I love you.  You definitely know a person living with epilepsy in Japan.  So thank you Yoshiko for everything you do for us.  I want to thank our sponsors, Highmark has been a sponsor of this show for the past several years.  The CEO just received the Tony Coehlo award, David Holmberg and this company has hired people forever since they started at the company.  Thank you so much for your sponsorship.  And earlier in the year we had a sponsor that came in over the first three or four months AudioEye.  And AudioEye has a fabulous software program for digital accessibility. 

    Okay, before you start, you're not going to be surprised.  I don't know what you're doing.  Ireland has the most listeners of all of the countries that listen to this show, which it is in 17 different countries, and anyone at any time can listen to any of the shows that are on demand.  I can't believe it.  I mean, this has been like wow, several months in a row!  So listen, you are helping me spread the word throughout the world.  Spreading the word throughout the world to people with disabilities that they can work and they can.  And my friends in Kazakhstan, Japan, Indonesia and South Korea and Panama where I visited the embassies and got to speak to people with disabilities, you know, we're going to get you more information so you can get this show out there.  Well, as I said, this is National Epilepsy Month and I want to try and feature different organizations that I know that I think are rock stars, and that first rock star would be the executive director of the Epilepsy Alliance of Ohio, Kathy Schrag, whom I've known and love and think so highly of.  Kathy, welcome to the show

>> KATHY SCHRAG: Hi, Joyce, and thank you so much for having me.

>> JOYCE BENDER:  Kathy, since we have people listening throughout the world, how about if you start by telling listeners how and why you first became involved in the world of epilepsy. 

>> KATHY SCHRAG: Well, I first ‑‑ I have been with Epilepsy Alliance Ohio, I'm going on 27 years.  And I started one of the things that Epilepsy Alliance Ohio does is we operate four residential facilities for adults with developmental disabilities who also have epilepsy.  And so that was my passion coming out of college was working with individuals with developmental disabilities, and so I started a couple of the group homes were just getting started as a Medicaid program so I was learning the regulations and trying to train the staff but my job was to develop habilitation goals, cooking goals, banking, meal prep, all types of different goals for the individuals who are residing in the facility to help them become as independent as possible.  And that was my passion.  So the longer I worked there, I then became the director of the residential programs, and at that point my office moved from out of the residential facilities down to our main office in downtown Cincinnati.  And you know, I moved downtown, as with any non‑profit, you wear a lot of different hats.  So I became more involved in the fundraising aspect of it as well.  But in the meantime got to see and meet a lot of individuals who are living with epilepsy come in and out of our office.  And so that gave me kind of a greater appreciation for what most people living with epilepsy experience on a daily basis.  And so it's the people that I work with and work for every day that have me coming back to work every day and it's been a great ride. 

>> JOYCE BENDER:  That's wonderful.  And you have had such an impact.  See, it is all about passion. 

    So, Kathy, as the executive director, you mentioned you've been doing this for 27 years.  What does it mean?  Like, what is your role?  What do you do? 

>> KATHY SCHRAG: Well, I've been serving as the executive director for it will be 12 years in January.  And for me what my role is, is you know, I provide oversight for all of the programs and services.  You know, I try to have that creative mind on what new programs and services that we can work on and focus on to really help make an impact on the people that we serve.  You know, there's the fundraising aspect, trying to raise the money so we can provide the in‑person human contact programs and services that are so important and so needed in our community.  And you know we have 60 staff that I work hard to make sure that they're receiving all the supports they need to be able to serve the people that we need to serve on a daily basis to help improve the quality of life for those living with epilepsy. 

>> JOYCE BENDER:  And I assumed that means you do have a variety of programs.  You work with adults and with children.  What would you say is the biggest program you have? 

>> KATHY SCHRAG: The biggest program would be our community education. 


>> KATHY SCHRAG: We provide a lot of different ‑‑ we have a lot of different curriculum, so we have a curriculum for day care providers, we have a curriculum, we do a puppet presentation for preschool through grade 3, which is fantastic for the kids, because they really enjoy that.  But it really explains epilepsy on a level that they can understand.  But we have trainings for teachers, for school nurses, for, you know, middle school, high school.  But for first responders.  We have developed and personalized our own curriculums based on whatever audience we need to educate.  Educating on seizure recognition, seizure first aid is so important.  Not only does it spread awareness, but when one in 26 people will be diagnosed with epilepsy at some point in their life, chances are everybody will know somebody who is affected by epilepsy.  So the education is extremely important. 

>> JOYCE BENDER:  I think that is so awesome, how early that you start doing that.  And do you see a big difference from that, Kathy? 

>> KATHY SCHRAG: Oh, yeah.  Do you mean as far as how the kids react? 

>> JOYCE BENDER:  Yes.  Early intervention. 

>> KATHY SCHRAG: Yup.  It's really interesting that this question.  I literally got an e‑mail at 10:30 this morning from somebody who has, you know, they volunteer at our camp.  We have Camp Flame Catcher.  And this individual every year he volunteers the whole week and his wife will come and he has a five‑year‑old son who they bring their five‑year‑old every day, like his wife will bring the five‑year‑old during the day during camp.  And he e‑mailed today to say yesterday when his son got home from school, he told him about a new friend.  There was a new boy in his class and he talked about he had fun playing with him and when he went to drop his son off at school this morning, the teacher came out to talk to him and said I just want you to know, your son was so kind yesterday, because the new boy that was in his class is in a wheelchair.  And his son went right up to the little boy and played with the little boy; that was his point.  He never mentioned it to him there's a boy in my class in a wheelchair.  He saw the child for the child and that experience was coming to camp and seeing and being, you know, seeing other children who are in wheelchairs has made him ‑‑ he doesn't see any of that, which, I mean, that's a beautiful thing.  And that's just one small example of what educating our children at a young age about different disabilities in that it doesn't define the person is so important. 

>> JOYCE BENDER:  And don't you think that probably makes a difference, even in confidence for the family?  You know, knowing well hey I'm not alone and there are other people out there going through this.  And also educating them on what to do and what to expect.  Don't you think that makes a difference? 

>> KATHY SCHRAG: Oh, I think it makes a huge difference.  It kind of takes that fear away.  You know, for people to realize okay this isn't anything to be scared of and it helps the person go from a position where they may have been fearful to where they know they can help and they can be of assistance.  And you know, for the family, I think that confidence in knowing that okay, now these children are going to understand, they'll understand better what my child is going through and I think it makes a huge difference.  That's why it's so important to talk about it.

>> JOYCE BENDER:  Well, that's the whole thing you just said.  Talking about it.  Realizing you're not alone.  And Kathy, you are the Epilepsy Alliance of Ohio.  So how do people reach you if they want to reach out? 

>> KATHY SCHRAG: They can call us.

>> JOYCE BENDER:  Your website? 

>> KATHY SCHRAG: Our website is epilepsy‑Ohio.org.  We are also on social media, so people can reach out if they want to follow us on Facebook.  Again we're Epilepsy Alliance Ohio.  They can reach out again by calling, by e‑mailing, visiting our website, yeah. 

>> JOYCE BENDER:  And one more time with that website? 

>> KATHY SCHRAG: It's epilepsy‑ohio.org. 

>> JOYCE BENDER:  So before we go to break, listen.  There are millions of children living in the United States with epilepsy.  And families that have adults or an adult with epilepsy who are struggling trying to make ends meet, not able sometimes to get medication.  So please, if you're listening to this show right now, go to that website and make a contribution.  As you're thinking about the holiday season.  And right now we're going to go to break.  Hey, if you just joined us, this is Joyce Bender, America's voice, where Disability Matters at VoiceAmerica.com.  Don't go away, I'll be right back with Kathy Schrag.    

>> JOYCE BENDER:  Hey, welcome back everyone.  I'm talking to Kathy Schrag, the executive director of Epilepsy Alliance of Ohio.  You know what?  At the break we were talking about something that just happened, at was it Disneyland?  Disneyland or Disney World? 

>> KATHY SCHRAG: Disneyland in Anaheim.

>> JOYCE BENDER:  Okay.  So tell our listeners about that. 

>> KATHY SCHRAG: Oh, my gosh it was a wonderful event that Brad and Candy Levy organized.  It started on Monday November 5th and Monday and Tuesday at the Disneyland resort hotel there was an exhibition hall with over 100 exhibitors or organizations who are working on behalf of people who are living with epilepsy.  And then there were over 3200 people who registered and were attending.  And on that Wednesday, you go to Disney World and it's epilepsy day at Disneyland.  So everybody has a purple shirt, just imagine 3200 people wearing their purple shirts in support of epilepsy.  Brad and Candy do a fantastic job with that event.  I was really, really impressed and you can probably visit their website, I would assume they would have pictures.  It's epilepsyawarenessday.org.  But it's something to put on the calendar for next year, that's for sure.

>> JOYCE BENDER:  They have this every year, then? 

>> KATHY SCHRAG: They do.  It's always that first Monday, I think he said it's the first Monday, Tuesday, Wednesday in November.

>> JOYCE BENDER:  Wow, that is so awesome.  I'm going to try to go to that next year.  That sounds great.

>> KATHY SCHRAG: I think you would really enjoy it.

>> JOYCE BENDER:  That sounds great.  You know what, Kathy, I wanted to ask you this earlier.  How much from you working with the public, how much do you believe people in general really understand epilepsy? 

>> KATHY SCHRAG: You know, I think people are starting to get a better understanding of epilepsy, but there's still, you know there's still that fear of the unknown.  Especially for the people who don't know anybody who's affected by epilepsy.  I will tell you, it seems like everybody I meet knows somebody epilepsy.  But I still think that, you know, there is there's a lot of work to be done.  In dispelling myths having people understand epilepsy.  There is the unpredictability factor of epilepsy and so there is definitely still work to be done. 

>> JOYCE BENDER:  Yeah.  And you know, I still, when I talk to people, they don't understand.  First of all, they think everyone who has epilepsy has a tonic‑clonic or better known to the public grand mal seizure.  They have no idea there's other type of seizures.  Like partial seizures.  And some people also don't realize they're probably working with someone with epilepsy.  Because I always tell employers, you already have people with disabilities working here, like epilepsy.  It's just they aren't telling you.  So there are people that it's controlled but then there are people that, and children that it can't be controlled.  But you know, the more you understand, the better you will be able to support and help organizations that are doing like what Kathy is doing.  So Kathy, now you are part of this alliance.  And just for all donors, listener specifically of course in all the areas you support, how will that change your organization? 

>> KATHY SCHRAG: Us being part of being Epilepsy Alliance Ohio and part of Epilepsy Alliance America it allows us to do what we do best and to focus on the programs and services that we provide in Ohio.  For us, that's what is most important is being able to ‑‑ online services are great, but there are so many times you can't replace the human contact and you can't replace going into a school and being able to, you know, do a presentation and train, you know, kids on seizure recognition, seizure first aid and then the questions that come after that.  The kids have a lot of questions that you just won't be able to answer with doing an online study.  You know, so being able to really put our efforts in focusing in on providing these programs and services that are in the community, in‑person support groups, we also do, we provide counseling services, so we provide counseling for individuals, we provide counseling for families, we've done couples' counseling that focuses around epilepsy.  So, you know, it's, for us, being able to focus and to keep our efforts here in Ohio is big.  And extremely important.  And then you know, with the, you know through fundraising efforts and donations, we're able to keep 100% of those donations and fundraising revenues here locally.

>> JOYCE BENDER:  What that means is in no way, shape, or form will it diminish the work that you're doing.

>> KATHY SCHRAG: Absolutely not.  It's going to enhance the work that we do.

>> JOYCE BENDER:  That is awesome.  Right there, right in Ohio.  Now where all do you operate? 

>> KATHY SCHRAG: So we have our main office is in Cincinnati and then we have an office in Columbus, Ohio.  And so we serve all of Ohio with the exception of, there's about six counties up around Cleveland that the Epilepsy Association of Cleveland serves.  And then in the Toledo area, there's the Epilepsy Center of Northwest Ohio and they serve that area.  And both of those organizations we have very good relationships with.  And they do a really good job providing a variety of programs and services in those areas as well.  But as far as the rest, we serve the rest of Ohio.  We do serve ‑‑ we do quite a bit of trainings in Kentucky, especially northern Kentucky, and then we have done work for years in West Virginia as well.  Our counselors, we will drive, we will go wherever we need to go to provide education and also if a family needs us to go and be an advocate and sit and go through the IEP or 504 process with them to help their child be as successful in the classroom as possible, we go and participate in a lot of those meetings as well. 

>> JOYCE BENDER:  Wow, that is so great!  Because a lot of parents, they need that.  And that's why they need to know about you.  So that you can help them in that way.  And you know, one question I wanted to ask you.  The business community in general, are they supportive of you in Cincinnati and these other areas? 

>> KATHY SCHRAG: Absolutely.  Cincinnati and Columbus, you know, have been absolutely fantastic.  We actually had merged and taken on the central Ohio area back in 2013.  And you know the corporate and medical community up in Columbus was very welcoming and they're very, you know, they were very excited to have ‑‑ to know that we were going to be able to continue to provide those services, that the services were not going to go away.  That we were going to enhance those services.  So, yeah.  I feel pretty blessed that we live in good communities.

>> JOYCE BENDER:  We've got to break down the stigma, we've got to change the stigma.  As a woman living with epilepsy I will tell the world I'm living with epilepsy and actually I do tell the world.  Because I want everyone to know never do you have to be ashamed if you have any disability.  This month we're focusing on epilepsy because it's epilepsy month.  But as I tell everyone, and when I talk to young people, I say I'm living with epilepsy and I'm not ashamed I'm living with epilepsy.  And neither should you.  So hey, it's time for our news break on the half hour.  We have Peri Jude Radecic from the Pennsylvania Disability Rights Network that I am so honored to be on their board and we are lucky in Pennsylvania to have Peri Jude Radecic who is awesome.  Peri, are you with us? 

>> PERI JUDE RADECIC:  Joyce, I'm with you, listening to the show and happy to be with you today.  And yeah.  I've been tuning in.  And thanks for all your good work. 

>> JOYCE BENDER:  Hey.  Advocacy matters, right?  So this is our advocacy matters part of the show so I'm going to turn it over to you, Peri. 

>> PERI JUDE RADECIC:  Thanks, Joyce.  Thank you for everyone who turned out last week who went to the polls, braved the weather, if you had bad weather, who may have even braved some barriers to voting, whether it be your polling place, your voting equipment to possibly other issues and voted last week.  We, all of us appreciated you getting out and voting.  And here we are a week later, a week out from the 2018 midterm election.  And I can tell you the advocacy community for people with disabilities, we've got a lot of work ahead of us, as much of the political landscape has changed at the national, state and local levels.  The Democrats are now in control of the United States House of Representatives.  The Republicans are still in control of our United States Senate but only by a very close margin.  One vote.  As Florida undergoes a recount.  Republicans have 25 governorships, Democrats have 23.  And two races are still outstanding.  In Florida and Georgia.  Depending on your state, I know you have many new local legislators that you will have to reach out to and educate about disability policy issues.  I know you will.  You will have service animal issues, you will have Americans with disability disabilities act issues, you will have Medicaid issues, you will have so many issues that we will have to reach out to our local, state legislative leaders, knock on doors and introduce ourselves and or policy issues to.  Our new Congress, which is the 116th Congress, convenes on January 3, 2019.  But before we even talk about the new Congress and what the new issues are, we have to finish our work with this Congress.  This Congress is not over.  So before the new Congress is sworn in, there is still work in the short term.  In these next eight weeks, our community is still focused on trying to move the Able Age Adjustment Act forward.  As we've talked about this is legislation that is designed to raise the age of an eligible individual to open an age account to age 46.  Because right now the age is 26 to open an able account.  Which is a tax‑free account for people with disabilities who incurred a disability prior to the age of 26.  We've got to raise that age up to 46.  Right now there are 20,000 able accounts open nationwide.  So we want to raise that age to 46, and we've got eight weeks to do it.  So election matters, advocacy matters, and we've got lots of unfinished business in the 115th Congress.  So if you want to track the able age adjustment act and other work as Congress works to finish out its 115th Congress, visit www.disabilityrightspa.org.  That's disabilityrightspa.org.  Thanks, Joyce for your time.

>> JOYCE BENDER:  Hold on for a minute, Peri.  A few things I want to say.  First, I want to thank you for your leadership on this show, encouraging to get out the vote.  Because we all know there are millions of Americans with disabilities, but the key is to register and get out and vote.  And may I say there's never been a midterm, ever, where there were lines miles and miles long.  And I want to thank you for encouraging the disability community to be part of that. 

>> PERI JUDE RADECIC:  Well, you're welcome.  I think certainly AAPD, which I know you're on the board of and you had guests on your show right before the election, is certainly a leader in the Rev‑up campaign that we partner with.  It's a pleasure to work collaboratively with the AAPD, the national rights network and others to make sure people have the access to vote and it's our pleasure.

>> JOYCE BENDER:  Thank you and keep up fighting the fight.  Website one more time. 

>> PERI JUDE RADECIC:  Yes, it is disabilityrightspa.org.

>> JOYCE BENDER:  May I say this woman is so passionate about fighting for the rights of people with disabilities, remember that group when you're making a donation.  Thanks for calling in, Peri.  Talk to you next week. 

>> PERI JUDE RADECIC:  Thank you, Joyce. 

>> JOYCE BENDER:  All right.  You know, I love this.  And we do this because we want to keep everyone knowing what's going on in the news.  You know what?  I mean, there like doesn't seem to be a method for people with disabilities to know everything going on.  So you know, I just love doing that.  So Kathy, you told us what areas you support.  A question I have for you is as you have worked with people with epilepsy, what would you say are some of the biggest issues? 

>> KATHY SCHRAG: Gosh.  You know, for adults big issues are employment, you know, especially for somebody newly diagnosed; how will this affect their employment, will they be able to keep their job?  Driving.  If they're driving if their driving privileges have been restricted, that creates a big issue for a lot of people.  For kids, I mean you have teenagers who, you know, some of the issues are acceptance with their friends, fear of the unpredictability of a seizure, what happens if I go to prom and I have a seizure during prom.  Kids, a lot sometimes don't get invited to sleepovers because the family, people are afraid of what the child might have a seizure when they're at their friends' house.  But there also are issues, we receive calls every day due to the expense of seizure medications, there's times people have to choose, do I pay for the medication or can I pay for my rescue med or do I pay my electric bill.  So yeah.  Those are some of the real big issues that people face. 

>> JOYCE BENDER:  Okay.  Tell me something what do they do in that situation?  The people that cannot find access to funds for medication.

>> KATHY SCHRAG: So we can try to connect them with some different patient assistance programs.  We do have ourselves an emergency assistance fund, that if somebody calls that we will help them, especially if they're out of their medications right now, we can assist them with paying for their medication.  But a lot of times we're able to find different emergency or patient assistance programs that can help them.

>> JOYCE BENDER:  And are these people, people that are unemployed? 

>> KATHY SCHRAG: Some are, but some aren't.  Some people who are ‑‑ yeah.  Quite a few ‑‑ a lot of people are employed, it's just with high deductibles and the way that our health insurance and the coverages have ‑‑ you know, you have the different medication tiers and it just depends.  It may be that the prescription that you're on may be very expensive.  But that's what works for you.  And changing that you could start having breakthrough seizures.  There's so many different factors that go into that.  But the expense of it, it doesn't just have to be somebody who's unemployed to face that expense, you know, that big bill. 

>> JOYCE BENDER:  You know what?  I mean, that is horrible.  That is horrible.  Are you all understanding?  I have epilepsy so let me explain to you that if I did not have medication, I would immediately start having seizures.  Because the time I was weaned off Dilantin and moved to Lamictal, even though it was not a rapid change, it was I was weaned off ‑‑ I still had a seizure.  And if I did not have medication, I would have a seizure.  Now, I don't have seizures to the extent of other people, but you're meaning, you're putting people's lives at risk.  Because look what happened to me.  I followed a move ‑‑ I fall at a movie theater, I fracture my skull, end up having life‑saving brain surgery but there are people who can fall down steps, can walk in front of a car, I could go on and on.  But imagine how terrible that is.  Well thank God, Kathy, that there are organizations like yours that can help someone that's in an emergency.  The problem is, you can't help people in the entire country. 

>> KATHY SCHRAG: Correct.  I wish we could. 

>> JOYCE BENDER:  And then about unemployment, it is so high.  When you say one of the reasons for that is the problem with transportation? 

>> KATHY SCHRAG: Oh, yeah.  Transportation is very difficult, especially for people who are having seizures.  Their seizures aren't quite controlled so they don't have their driving privileges.  If they don't live in an area that has public transportation that can help them get to and from work, it's a difficult ‑‑ it's very difficult. 

>> JOYCE BENDER:  Yeah so what that means is, you could have one seizure, but because you've had one before, it may be you have to go this many months without having a seizure.  One seizure, you can lose your driver's license.  Which is of course what happened to me when I had this accident.  You know, no driving privileges for six months.  Okay.  Now as Kathy said, if there isn't public transportation, then what?  So that is one of the reasons there is such high unemployment for people with epilepsy, plus of course you know entry level.  Without work experience, is always the most difficult getting the opportunity to work!  But right now we're going to go to our final break.  And then we will come back and talk to Kathy about Kathy.  How is that?  This is Joyce Bender, America's voice, where Disability Matters at Voice America.com.  Don't go away.  We'll be right back.   

>> JOYCE BENDER:  Hey!  Thanks for joining us today as we are kicking off celebrating National Epilepsy Month.  I really appreciate all of you being on with me today and make sure you tell everyone you know living with epilepsy about this show.  Remember, you can get it at iTunes and later on you can hear it on my website, benderconsult.com. 

    Well, Kathy before we end one more time, how does someone make a donation who Epilepsy Alliance Ohio? 

>> KATHY SCHRAG: They can log on our website, which is epilepsy‑Ohio.org and we have a donate button that you can click on.  You can call our office.  Some people don't feel as comfortable putting their credit card information online.  So you can either call our office or some people prefer to mail a check.  That works as well.  And what some other people are doing is they have like on Facebook have created like fundraisers.  Whether it's for their birthday, instead of giving me a Christmas present, I'll do this fundraising and raise money for the Epilepsy Alliance Ohio.  So, yeah. 

>> JOYCE BENDER:  Well, that's awesome.  I'm assuming too if they go to your website, there's probably a contact place so they can call you or as you say get in touch with you.

>> KATHY SCHRAG: Yeah.  Absolutely.

>> JOYCE BENDER:  You heard that and make sure you look at that.  And are you on Facebook also?  Is that what you are saying? 

>> KATHY SCHRAG: We are.  Epilepsy Alliance Ohio.

>> JOYCE BENDER:  All right, that's good.  So Kathy, look at everything you've done, wow, you've done a lot over the past year.  I know myself personally how much you've done over the past year, but what would you say is your greatest accomplishment? 

>> KATHY SCHRAG: Greatest accomplishment?  I would say taking the greatest risk to do what's right for those living with epilepsy in our communities. 

>> JOYCE BENDER:  Wow.  Is that a great statement?  Go ahead. 

>> KATHY SCHRAG: Yeah I think that, yeah, that was probably our greatest accomplishment was having confidence in the decision to kind of go on our own as Epilepsy Alliance Ohio and then work with seven other organizations to form Epilepsy Alliance Ohio and you know, just when you know you're doing ‑‑ when you have ‑‑ when what you're doing is completely focused on serving people with epilepsy, then you know that the decision that you make is the right decision.  When you know it's to help people with epilepsy and you can stand tall and you can have confidence in knowing that you made the right decision.  And so that would be my greatest accomplishment, I would think. 

>> JOYCE BENDER:  I know everyone is proud of you.  And you have a lot of supporters in the alliance that are also very supportive of you. 

>> KATHY SCHRAG: Absolutely.  Absolutely.  I'm very, very fortunate.  We have ‑‑ I have ‑‑ I'm connected to some, you know, some great colleagues who operate great organizations that help hundreds of thousands of people living with epilepsy. 

>> JOYCE BENDER:  Let me ask you this.  You have done so much over all this time to help so many people.  Where did you get that from?  I mean, did you have a role model?  Was it your family?  What instilled this desire in you to reach out and help people?  Because just as you told your background, you have always wanted to help people.  Where do you think that came from? 

>> KATHY SCHRAG: Probably my mom.  My mom, that was you know, she worked with individuals with disabilities and so I guess just seeing her and there were times that she would take me to work when I was little and I guess I didn't know any different.  I just thought everybody is the same.  And go through school, you know you meet some people who have disabilities and you see other people not treat them so great.  And I guess then it was just my heart has always been there, because, you know, we're all in this together.  And yeah.  It would definitely have to be my mom. 

>> JOYCE BENDER:  Isn't that great?  You know, I always say to remember when you're a parent, like if you have a daughter or son, but I'll use a daughter in this case, there's always a little girl watching and that is so true.  No matter who you are, teacher, Sunday schoolteacher, parent or relative.  There's always a little girl or a little boy watching what you do.  And it has such an incredible impact on them. 

>> KATHY SCHRAG: Yeah.  You're absolutely right. 

>> JOYCE BENDER:  Well, Kathy, first before we close the show, you know, I've known you a long time.  And I want to personally thank you for your tireless commitment to helping people living with epilepsy. 

>> KATHY SCHRAG: Thank you, Joyce, I appreciate that.  It's been an honor just knowing you and watching you.  So just as a little girl is watching, colleagues are watching you as well.  And you know, you are a great inspiration to all of us for all of the work that you do on behalf of not just people living with epilepsy, but people living with all disabilities. 

>> JOYCE BENDER:  Well, thank you.  Very kind words.  But the feeling is mutual.  One person, I always tell people, you know, you get a chance in life.  Something will happen and you have to make a decision.  That one decision will change someone's life more than you can imagine.  It can change someone's life.  And we have learned here in Pittsburgh as I talked about on the last show with the terrible tragedy we had at the synagogue, the horrible shooting, that our mission in Pittsburgh across the board is this.  Be kind.  Be kind to someone because that is what it's all about.  Being kind to another person.  So Kathy, what message do you have for our listeners today? 

>> KATHY SCHRAG: You know, to know that there are epilepsy organizations, Epilepsy Alliance Ohio, depending where you live, that there are people who want to help and want to do whatever they can to help you through your difficult time and to help provide any type of assistance that you need, to help you through.  Don't be afraid to call, don't be afraid to ask for help.  Because we're there.  It's what we want to do.  It's why we come to work every day. 

>> JOYCE BENDER:  Reach out.  She's so right.  Reach out.  Don't be ashamed to reach out.  And I want to remind you, this is National Epilepsy Month.  Remember, anyone can have a seizure.  One in 26 people will have epilepsy in their lifetime.  Someone you know may be living with epilepsy.  As I said before, they're just ashamed to tell you.  But I want to say specifically a message to parents.  When you have a child living with epilepsy, a small child, please do not say to them shhh, don't tell anyone.  Don't tell anyone.  Because you know what you're really saying?  There's something wrong with you.  Don't do it.  Don't do it.  Don't treat them like that.  And then for those of you that know a friend of your child that has epilepsy, you know what?  That story that Kathy told earlier about children not being invited over to a party because the mother knows that child has epilepsy.  I just want to tell you, I'll never forget at this big conference I was at that when I took questions afterwards, this little girl, I still remember her, Emily.  And Emily was like 10 years old.  And she told this story of how she was not invited to an event because she had epilepsy.  So please, if you're listening to this show, just know that can just destroy and child's whole spirit.  Don't do it, because it could be your child tomorrow.  This is Joyce Bender and you know that Joyce ends every show we have with a quote.  So today that quote is:  Few will have the greatness to bend history itself.  But each of us can work to change a small portion of events.  And in the total of all those acts will be written the history of this generation, said Robert F. Kennedy.  This is Joyce Bender, America's Voice, where Disability Matters at VoiceAmerica.com.  Talk to you next week with Peggy from the Epilepsy Association of Pittsburgh.  See you then.