November National Epilepsy Awareness Month

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

Happy Thanksgiving to everyone in the United States and around the world. Listen, I am thankful for you. All of you, I want to just tell you how much it means to me, how supportive you are. I am so thankful because you're helping me, a woman living with epilepsy, founder of Bender Consulting Services, where we focus on the employment of people with disability, and the Bender Leadership Academy, where we focus on helping young people understand the world of work and dealing with bullying. You are helping me get the message out to them, but more importantly, you are helping everyone that listens to this show spread the news about the crusade. And around the world, like China, I just want to say thank you so much. Thank you so much for everything you're doing to spread the word to other people that are listening to the show. You know, the show is international and you are all, I thank you because just by supporting this show, you're helping me spread the word about quality of life for all people, no matter where they live in the world with disabilities. And a special shout out, oh, Yoshiko Dart, I am so thankful for your friendship. I am, and for your leadership and how you carry on just in spirit. Thank you so much. Richard Roberts, Gang Young, and Cheryl Harris, all with the State Department in South Korea, Japan, and Tunisia, and Veniamin in Kazakhstan. These people have become friends of mine. They are great disability rights advocates. Richard and, and Gangyong just have been friends and supporters for so long. Veniamin, so happy when I met you in Kazakhstan. And my new friend Cheryl. Thank you for helping me really have an impact on the world. So thankful for you and so thankful for Highmark, who has been a lead sponsor of this show for over 4 years. Morgan O'Brien, thank you for what you did with Peoples Natural Gas to support this show as a sponsor. Regina Hayward, thank you for what Wells Fargo did to support this show. And oh my goodness, my friends at the Employment Options, they are all awesome there. So thank you everyone. And I must tell you, I'm really, really, really, really excited today. That is because we are going to announce this year's King of the Mardi Gras. And just so you know, in Pittsburgh, this is a fundraiser for the Epilepsy Association of Western and Central PA. Sold out every year. I'm not kidding. Sold out every year. And although because of everything going on with COVID it will not be this year on that day, Mardi Gras, a little bit later in the year, it's gonna be fabulous. And you'll hear why in a little bit when you hear who the king is. It's gonna be fabulous. And with me today is this president and CEO and just one of the best people I know, Peggy Beam Jelly, the president and CEO of the Epilepsy Foundation of Western and Central PA. Thank you for joining us today, Peggy.

Well, thank you, Joyce, for having me. Happy Thanksgiving to you. And I just want to start, Joyce, by telling you what a blessing you have been to the Epilepsy Association and how much we appreciate you and everything that you do for us, not only for the epilepsy movement but for all people with disabilities. And especially this time of year, we all are counting our blessings and certainly counting ourselves blessed having you and having your leadership here in Pittsburgh and all over the country. But we certainly are blessed to have you here and thankful that you're here with us every day. So thank you very much for everything you do for us.

Oh, it is my pleasure. It's a mutual thank you and blessing because you know what? It's personal to me. When you're living with epilepsy, It is personal. And you know, there are how many— 1 in 26 people, Peggy? 1 in 26 will have epilepsy in their lifetime?

Yeah. Yeah. That was the estimate in 2012. They came out with that estimate. I think it's probably more than that, but you know, you don't have a conversation about epilepsy that people around you don't start to talk about. Somebody in their family or a friend or a close acquaintance that is affected by epilepsy. It's always been very amazing to me how that happens. I'm sure that happens to you all the time, Joyce.

Uh-huh.

Yeah. As soon as you start to talk about epilepsy, people immediately chime in and say, "Oh yes, I have a brother or a cousin," you know, somebody very close to them that's affected by epilepsy.

Yeah, you know what? That is so true. I mean, even I've been at a restaurant where I shared something with the waiter or waitress and they said, "Oh, I live with epilepsy." But they're not telling their friends or anyone. And then I speak at a corporation and then guess what happens? Then people will come up to me and say, "Oh, by the way, listen, I'm living with epilepsy, but I did not want to— I don't tell anyone." So yes, I know there are more than the 3 million we know of, but I want to get back to that Mardi Gras. Oh my God, it is the best in the country, that event. It is the best gala in Pittsburgh, as I said. And you know this, you know how it's sold out every year, Peggy.

Absolutely. I remember We're always very blessed to have the support of the corporate community in Pittsburgh, and it is always a really, really fun time. And we're disappointed to not be able to do it in person this year, but really very excited about it nonetheless.

Oh yes. And you know what? It will be fabulous. But what I was going to say, in the past, people would call in. Remember, they'd call in, they'd almost get mad at you because they couldn't get a table?

Yeah, yeah, yeah, absolutely.

So that shows you what I mean. But here's the big thing we're going to announce. The king of the Mardi Gras. Oh, I'm so excited. And you're going to be hearing about it over and over again on the social media. But this is our big announcement. You know, I feel like I'm announcing the cabinet or something. This is our big announcement. And I will— before— guess what? Special surprise. I have this person on the line, and before I— yeah, before I announce this person, I just want to say this person really deserves to be the King of the Mardi Gras. I've known this person for years. Actually, this king worked in disability way back, has supported me forever, has always been there, but not just for me, for the whole, for the whole community. Oh my goodness, this person has done so much. But hey, how would we like to meet this person? And Audrey Russo, are you on the line?

Yay, I'm on the line!

I'm on the line!

Yay!

Audrey Russo is the 2021 King of the Mardi Gras. And how about that? We have a celebrity here. We have a celebrity. She even called into the show. Audrey, congratulations. You so deserve this.

Listen, it's the best party ever.

Number one for the best cause. Pulled together like none other.

I mean, how could you not just be thrilled to honor the work that people have done in this space and the work that's continued to be needed?

And that's why you're receiving it. And hey, how about this? Tell them, what, what are you the CEO of, Kang Russo?

I'm the I'm the president and CEO of the Pittsburgh Technology Council, which is the largest city-based technology trade association in North America, based in Pittsburgh.

And it is—

I like to say it's one of the coolest jobs around because I get to work with all the people who are building the future in tech and innovation. And they're the ones who are making Pittsburgh an amazing place to live and to work. And we're addressing our own issues that we have, but I get a seat at the table and very privy to solving some of the most complex issues that the world faces.

Yes, and I just want to repeat, largest city-based technology organization of this type in North America. And that, Audrey, is why you are the king of the Mardi Gras. She has accomplished so much, done so much. Oh, just wait till you see her at this gala. She is a dynamo. She's fun, she's charismatic, but most of all, look what she's done. Hey, that's a big accomplishment. And so is it not fitting that this year that we're using technology for all of these events that we're honoring you. How perfect is that?

So fun, so fun. I can't thank you enough.

I can't.

This will be a lot of fun.

It's for an amazing cause, an important one, a very silent one.

And the stories that people get to tell about their own lives at this event, in addition to us having a great time, are just so powerful.

Yes, it is. Well, listen, we'll let you go back to your palace, King Russo, but I appreciate you calling in so we could make this big, big announcement.

Well, we are very excited to work with you. Thank you.

Stay safe, everyone.

Thank you again.

Happy Thanksgiving. How about that? We got to make our announcement.

So exciting.

Audrey Russo, CEO of the Pittsburgh Technology Council. Let me tell you, she works with Carnegie Mellon, everything, Facebook, Google, you name it, and all the other companies like we are a member. I mean, she is just absolutely fantastic, and I'm so excited. Um, just one minute, Peggy, give them an idea like about the Mardi Gras, what it's like.

Well, the— well, as, as Kang Russo is saying, it is a huge party. It's a lot of fun. It's Typically, we try to indulge everybody's extravagances on Fat Tuesday and we do it in a fun party atmosphere that tries to mimic New Orleans and Fat Tuesday as best we can, but it is a big fundraising event for us. And so, you know, it's— New Orleans style. We have Dixieland bands and lots of balloons and decorations and things like that. But it's also a very serious event for us where we talk about the challenges that people with epilepsy face. And we've, as I said, always had a ton of support from the corporate community in Pittsburgh. And so it's really been a huge event for us, an important event for us. One that is fun but is really important at the same time. So we're really, really excited to have Audrey Russo working with us this year. As you said, Joyce, it's just the synergy behind us using technology to do the event this year and having Audrey Russo's leadership behind it is just beyond exciting to us.

It is. It is beyond exciting. I agree with you. I meant what I said. She's a wonderful, wonderful person. She's always been involved with the Mardi Gras. I'm so, just so thrilled to have her.

Absolutely.

Before we talk a little bit more about epilepsy, just a moment, I wanted to talk about Nedra Dixon, who is with Accenture. I'm mentioning her because I'm talking about different leaders I'm thankful for this year. I'm very thankful for her. It's because of her support of a certified disability-owned business enterprise that Accenture bought, Eye Disability. But here's why I'm mentioning her. Look out. She's like a rock star. And together, the two of us, we're going to change everything. We're going to change everything. We're going to be change agents for freedom for people with disabilities working together, going to their customers, talking about iDisability and the employment of people with disabilities. That is my big announcement for 2021. Look out, look out. You're going to see some big things happen. So very thankful for her.

Wow, is that exciting?

I know, isn't that great? Very excited about it. So, Peggy, I wanted to get back to you and I want to say again, I'm so thankful we have you. How long have you been with the Epilepsy Association?

26 years. Almost 27.

Wow. Yeah, long time. Yeah, and you know what? You have been a faithful advocate all of those years. We couldn't have a better leader than you. And about that Mardi Gras, we couldn't have a better person than Colleen Folkerson, who I call the Mardi Gras. And I'm so— we're so blessed to have all of you, all of your staff. Absolutely.

Colleen does a fantastic job.

Yeah, but we're so thrilled to have you, Peggy. So you are doing And I am the board chair, so let me say this. She is the best of the best. The chair has spoken. Now, Peggy, before we start a little bit more detailed about epilepsy, what impacts have you seen, sadly, that COVID-19 has had on the epilepsy community that we serve?

Well, Joyce, I think they're not entirely different than the impact that COVID has had on the community at large, although I think the impact has been maybe a little bit more severe. COVID-19 for example, has isolated people, and many people with epilepsy were already isolated to begin with. So, you know, it really— coronavirus and COVID-19 has really accentuated many of the negative aspects of dealing with epilepsy for many of our patients and many of the people that we work with. You know, they were isolated to begin with, And boy, now are they really isolated. Do you know what I mean?

Yes, I do.

So, you know, many people had a difficult time with gaining access to healthcare services, and, you know, now it's just even worse. You know, folks had a difficult time with employment. Many of the folks who had employment had employment in service industries and have lost their jobs. You know, all of the things that have impacted the community as a whole, you know, kids who have had a hard time in school are suffering the effects of not having access to the specialized services that they had in school. So all of the things that you hear people talking about COVID having impacted their lives are things that many people who have epilepsy and seizures we're already dealing with, and so it's, it's just accentuated all of those problems.

Yeah, you know, the medication, that's another thing, getting the medication. I mean, I, you know, there— and all the people laid off. I mean, what do you think is happening even in the country about the medication? I mean, that's really frightening.

Peggy? Well, I know that a lot of people who live in rural communities who have always depended upon, for example, the mail-order medication systems have run into problems with that whole post office debacle. You know, I'm sure that people who live in urban areas and routinely go to the pharmacy to pick up their meds on a monthly basis, you know, probably don't realize that, you know, in rural communities that don't necessarily have access to that, they really rely upon those mail order script services to get their medication. And, you know, when we have those problems with the post office, people are really in dire straits sometimes. So it's not even a matter of not having access to health insurance or not having access to the ability to pay for medications, they're just not getting them because of the problems with the post office. So yes, people have lost their insurance. Yes, they have a hard time paying for their medication. But I mean, even beyond that, just the structural systemic kinds of problems that have been happening with like the post office or have just caused tragic problems in some instances.

Oh, I can't even imagine. I mean, I'm thinking about myself. As I said earlier, I live with epilepsy and I take Lamictal, but if I didn't have this medication, I would absolutely be having seizures. Yeah, that is a really scary thing when you think about it. Well, what advice do you have for people living with epilepsy in reference to COVID-19 listening to you right now?

Well, we have really encouraged folks to do something every day to connect with somebody else. Make a phone call. If folks can participate in some sort of online activity, we offer a lot of online support groups. We've been doing online webinars. We've even been doing online social activities. You know, people can't gather in face-to-face environments because of the risks, but anything that folks can do to connect with another person, even if it's just, you know, going out and sitting on your porch and kind of yelling across the street at somebody, it's really important for folks to have some kind of connection with other folks, if it's a phone call, if it's, if it's writing letters, if it's having a pen pal, if it's just getting even on like one of the Zoom calls or having some kind of connection with folks, I think is really, really important and really helpful. And so we've even done just telephone support groups with folks, because a lot of folks don't have access to computers or they're not comfortable with computers or they don't like to see themselves on the screen, things like that. So we're really just encouraging folks to try their best to keep up with their medical appointments, not stay out of the hospitals. A lot of people are really fearful about going to their medical appointments and things like that. So we're really encouraging folks to have contact with other people and to try and not be as isolated as possible. Possible and to keep up with being active if they can, getting outside as much as possible, especially now that it's getting dark earlier and things like that. Getting fresh air, doing some exercises, healthy lifestyle things that will hopefully help folks stay, keep their moods up and that kind of thing.

I would only add to that, Peggy said right everything she said, but I realize with mental Health issues often is sometimes a problem with substance abuse or alcohol. Don't do it. First of all, it's against the law with substance abuse. Definitely don't do that. But even drinking alcohol will diminish the anti-epilepsy medication you're taking. So Don't do it. Really. I like Peggy's idea of calling people, staying in touch with people. And you know, this is National Epilepsy Month, which is why I'm so excited to have Peggy with us. And there is a lot of information you can get from right now. What is our website, Peggy?

Our website is www.eawcp.org.

Would you repeat that?

Mm-hmm. www.eawcp.org.

Listen, go, go. You can connect with people, you can connect with the staff. We really take this seriously. But go to that website, look at everything that's going on, and remember, we want to talk to you. We care about you. Before I go on to our news break, I want to ask you a question, Peggy. Mm-hmm. Oh, and by the way, when you go to that website, make a donation. Yeah. Here we are this time of the year where people are always saying what— you know, I hate it when people are saying, I don't even know what to ask for. I have everything. What should I ask for? I can tell you. If you have everything, you should give money to a foundation or to those in need and pay it forward. That is why you should go to our website and make a donation. I don't care how small it is, but you know, if you're able to, we're trying to help children living with epilepsy deal with bullying, dealing with problems. We're trying to help parents that have lost a child to SUDEP. We're trying to do training. I mean, so many things. Can't do it without money. Make sure you take time over the holiday or right when you hang up today to make a donation. And you know, Peggy, people with epilepsy deal a lot with different issues, including a horrible stigma. Why do you think that is? Why do you think that is?

You know, that's the ongoing unanswered question around epilepsy. I mean, my only answer is that people don't talk about it, have never talked about it, don't fully understand that. But as you said at the beginning of the show, you know, people will come up to you at a at a corporate event and say, you know, I don't want to talk about it in front of people, but I wanted to tell you that I have epilepsy. I think it just stems from the discrimination that people have always suffered as a result of having epilepsy. I mean, you know, it's a reality that folks will pay higher insurance premiums, they'll be denied insurance. They've suffered employment discrimination as a result of people finding out that they have epilepsy, even if their seizures are controlled. So I think there have been really good reasons for people to not talk about having epilepsy or not talk about the fact that they have seizures. So hopefully that is changing because lots of people who do have epilepsy are talking about it today, you know, 20, 25 years ago, they wouldn't have dreamed about talking about it. But I think that that's at least a part of where that comes from. And I think a part of it comes from the medical community that oftentimes, 25 or 30 years ago, doctors would tell people not to talk about it.

Yeah, I'm one of them. Don't tell anyone you have epilepsy. Say you have a seizure disorder. Right. And then I met Tony, Tony Coelho, and that was the end of that. Now, right, and listen, when you're listening to the show today, I'm living with epilepsy and I am not ashamed I'm living with epilepsy, and neither should you. But right now we got to get ready to go to our news break on the half hour, and before Perijude Radisic comes on, I just want to say how thankful I am for her and her leadership, not only at Disability Rights of PA, which I'm so honored to be on the board, but the time she takes to really educate us. We don't really have a source to go to, to know what's going on all the time in the disability community, and she does so much for us. So thankful for you, Perry Jude. Uh, are you with us?

Joyce, Joyce, I am with you. Thank you for always having us on your show week after week. It is a pleasure.

Oh. All right. Well, what do you have for us today, Perry?

Yeah, Joyce. So, last week, the Federal Bureau of Investigation released its annual collection of hate crime statistics as reported by participating police agencies across our nation. Hate crimes are data collected by local law enforcement. Now, they submit this data to the FBI's Uniform Crime Reporting System. We know that because that is the data that we read about when we hear about crimes that are collected, such as assault, burglary, arson, murder, Intimidation, theft, trafficking, vandalism, and more. Those are the crimes that are collected by our local law enforcement. And then from time to time we read about trends in our community. So the FBI collects that data. And the UCR, the Uniform Crime Reporting System, the FBI publishes that data on crime in the US. And its purpose is to generate reliable information. So I am giving you this background because it is important to understand where hate crime data is reported. So hate crimes were added to the Uniform Crime Reporting System in the early 1990s. Actually, it was 1990, after an act of Congress, so that it was easier for law enforcement to determine if vandalism, intimidation, murder, or other crimes were motivated by some sort of bias. Police could go in and indicate whether that incident was bias-motivated. So here comes the FBI in 1990, and they released their annual data. So across the country, there are 15,588 law enforcement agencies. That provide all of this data to law enforcement. And they showed only 7,314 criminal incidents of hate crimes. That is bias on the basis of these categories: race, ethnicity, ancestry, religion, sexual orientation, or disability. Gender and gender identity. So the FBI does— they never estimate this, and they don't go out and collect it themselves. So they rely on law enforcement to submit these reports. So how does disability line up to other protected classes? Well, disability in 2019 was only 2% of all of the hate crime data collected by and reported by law enforcement. Enforcement. 57.6% of the reported hate crimes were people targeted because of their race, ethnicity, or ancestry. 20% of us as Americans were targeted because of our religion. 16.7% were targeted because of our sexual orientation. And if you want links to all of these reports, go to Disability Rights www.spa.org. We have the links to all of this data from the Federal Bureau of Investigation. Go now. You can find these links. So what does this mean for Pennsylvania? Well, Joyce, this is going to be surprising to our listeners. There are over 1,400 law enforcement jurisdictions in Pennsylvania. Only 15 reported hate crime data to the FBI. Only 15. So of those 15, only 41 incidents of hate crimes were reported. So 15 agencies out of 1,400 reported, and of those, only 41 incidents of hate crimes across all protected classes. So that means that there were zero incidents of hate crimes on the basis of disability in 2019. 28 were bias-motivated on race and ethnicity, 9 on religion, 4 on sexual orientation, 0 on gender, and 0 on gender identity. Now, I have a list if you, again, if you go to disabilityrightspa.org, I list the jurisdictions in Pennsylvania that are reporting hate crimes. And you will be shocked by how few there are in the names. So, at Advocacy Matters, It means get involved.

Look at this data.

Look at the jurisdictions who are reporting. And then stay tuned to Disability Matters with Joyce Bender. Because I'll tell you what, we expect legislation to be introduced into the next Congress that will seek some reforms to how this system is working. And I hope you'll agree that there's some reforms that need to happen to this reporting system, Joyce.

I am shocked. I am shocked. How many police— how many police jurisdictions reported this data?

Yeah, 15 out of, uh, just over 1,400.

Oh my goodness. So we really have no idea what happened is what that means. No, no, no idea. Now, Perry, while I have you on here, well, first of all, yes, Peggy, we want to know what happens. So, I mean, Perry, make sure you keep us updated on this. Is there anything we can do, the listeners?

Well, I really, I really think it's important for us to understand this information. So if you go to disabilityrightspa.org, please look at the show for today. It's dated today. It's at Advocacy Matters. It'll be on our homepage. And check this out for yourself, right? We always, you know, verify the information I'm talking about. Go ahead and look at the data. And if you're not from Pennsylvania, you can find this information for your state. I give you the tables for your own state. This is a problem across the country, not just in Pennsylvania. And I'm talking about that only 15 jurisdictions in Pennsylvania reported hate crimes because of race, because of ethnicity, religion, sexual orientation, and disability. So we have got a problem intersectionally across Pennsylvania and across the country. So we have to address this together. And we will do this together. So just look at the data and Stay tuned to Joyce's show because we'll talk more about this when the new Congress is sworn in.

Oh my God, Peggy, uh, while I have Perry Jude on here, you know very well that there are people with epilepsy that after, uh, having a seizure in front of them—

absolutely— what has happened Joyce, just think of the number of universities there are in this state. Colleges and universities. I mean, I could hit 14 of them just out my window in Pittsburgh. I mean, that's crazy. So there's no requirement for these police and law enforcement agencies to provide this information?

Yeah, and you know, as I'm saying, she's talking about disability. People with epilepsy have suffered hate crimes, although many of them do not tell. And people with intellectual disabilities absolutely have had incidents of hate crime. But you would think no whenever you hear all of this. So yes, I want to see I mean, that's just astonishing to me. Horrible. I can't wait to see— when will— when do you think that'll be with the new Congress? When do you think this legislation will get brought before them?

Joyce, I don't know for sure. My guess is it'll do something with the— there'll be something related to the Matthew Shepard Hate Crimes Act, and that will deal with some sort of mandatory reporting. There will be opposition. You think, "How could somebody be opposed?" Well, you know, as Peggy said, this is a voluntary system, and there may be opposition from law enforcement that doesn't want to be forced to collect this data. But, you know, they already are collecting data on intimidation and on murders, and they just have to go ahead and have commitment from the very top of law enforcement to have leaders who condemn hate. They have to have priority for reporting crime and prosecuting crime. And so, it is going to take us from the grassroots pressuring law enforcement and leadership in our, in our counties to do this. And then from the top in Congress down, to do this as well. So it's going to take us from the bottom up and from the top down to make this happen.

Wow. Wow. That really— Peggy, isn't that shocking to you?

Well, absolutely. And it's, I mean, it's also intertwined. I mean, Joyce, how many of the, you know, these tragic shootings of you know, young men, you know, from police forces who've lost their lives, how many of those young people and young black men have been reported to have had, you know, some type of mental health issue that was going on. So I mean, the disability issues are so intertwined with the social justice issues on these things. I just— you can't ignore them.

Yeah, that is so true. All right, well, Perri, you keep us up to date, but I want to thank you again for the absolutely fabulous job you've been doing. DisabilityRightsPA.org, go to the website, read all about it. So much great information, and You know, so honored to be on that board, but make sure you go, then go to Advocacy Matters and you can review all of this information. Perry Jude, happy Thanksgiving, and I'll look forward to talking to you next week.

Same here, and happy Thanksgiving to you and to Peggy.

Take care. Thank you. Thank you. Amazing to have all that data available on that site like that. That's amazing.

Yes, yes, isn't that— that is really great. Peggy, you know when we were talking about stigma and all, and remember when we were saying that a lot of people with epilepsy do not disclose they have epilepsy?

Yes.

Well, there are a lot of people that don't know anything that much about epilepsy, yet everyone knows breast cancer because of, you know, the campaign, the pink campaign. And yeah, believe me, my mother went through this, so it's very, very, uh, near and dear to me with how important it is. But what I can't figure out is I don't think people realize how many people, um, die from epilepsy.

Yeah. Well, more— actually, more people die from seizures, seizure-related incidents, and from something called sudden unexplained death in epilepsy than die from breast cancer every year in this country, which is astounding. And it's astounding to me that we don't talk about that as a public health issue, but it's the fact. And, you know, I mean, it's not great that anybody's dying from any of these conditions, but, you know, we've just not had the kind of attention from the National Institutes of Health, from the researchers, in terms of treatment and control and things like that, that, you know, breast cancer has received. And so we don't have the treatments, we don't have access to control for seizures yet. So until that research is done to really figure those things out, unfortunately, we will continue to lose folks to SUDEP and to seizure-related incidents.

And why, why do you think it's just because— I don't know what— this is like that story that Perry Jew just told us, because there isn't enough data being made public, uh, and being made public by the media, uh, because with that many deaths— why, more than, more than, uh, breast cancer— why would everyone not need to know about this, you know?

I, yeah, I don't, I, I don't, I don't think it's fully understood. Um, I don't, I don't think that even the medical community necessarily fully understands the mechanisms behind what causes sudden unexplained death in epilepsy. So, you know, that could be a part of it. I still don't understand why the medical community doesn't always discuss that with folks. But gosh, Joyce, just in the last month, we have lost 2 individuals to suit up, both relatively healthy young people, one young man who was in his 30s and one young man that I heard about yesterday who was in his early 40s. So it's not as if it's something that's rare in my mind. I mean, I'm sure that we hear about most cases, but still it just is— it's It happens often. So, you know, we have discussed that a lot this month. We've really worked hard at trying to increase awareness this month because it's Epilepsy Awareness Month, to increase awareness of SUDEP and death in epilepsy in general. We just kind of want to try to let folks know that we're here for them, that we do have a network of families that are folks who have experienced death in epilepsy who are available to support other families. Excuse me. We want to let folks know that we have some supports available to families who feel that they have a family member who could be at risk of sudden death in epilepsy. We have a program called Emma's Gift that was established in memory of a youngster who passed away from SUDAP. Her family established that program, and that provides movement monitors and sleep monitors for folks who couldn't afford to get those monitors on their own. We also have a respite care program for families. So we just, you know, have tried to spend some time in the month of November to let folks know that we are here and that we do have some supports for folks who have experienced SUDEP or some other type of death in epilepsy.

Yes, it's so horrible. It is so horrible. So as Peggy just said, the person could be 30, they could be 40, but a lot of them are 5 or 7 or 12. It's so horrible. What it is why it's called sudden unexplained death in epilepsy is that that's exactly what happens. They, you know, parent goes into a room to wake up their child and the child has passed away. Can you possibly imagine how horrifying that is? And this is a child, child with epilepsy that this has happened to, and And sometimes it happens more frequently with people that have difficulty with seizure control. But I mean, it just, you know, you just don't know what's going to happen. And that's why it's so important to do research in this area, but also to talk about it because a lot of people including the medical profession, do not want to talk about it. I mean, Peggy, is there anything parents could do? Like, is there anything they could do to prevent that from happening?

You know, the issue of prevention is one that's a little bit controversial, but I mean, I think that there are things that if you feel that you— first of all, I think if you If you have a child that has epilepsy, I think you should talk to your physician about it because you need to be aware of that SUDEP exists. You need to educate yourself about what SUDEP and sudden unexplained death in epilepsy is so that you are aware of it. And there are things like the movement monitors so that if you have a child that's having a seizure at night, you are alerted to it. There are things that would put you at greater risk of having a SUDEP episode that, you know, things like being very compliant with your medication are very important. So, you know, using the word prevention in a strict sense is a little bit controversial because we don't specifically always know exactly what causes it. Doctors are a little bit, hesitant to use the word prevention, but there are things that you can do that we know might actually lower your risk. Things like medication adherence and things like that. So there are times when children's seizures are so uncontrolled that families, for example, will maybe talk about just taking the child off of medication for example, and just dealing with the seizures. We know now that that's a very dangerous thing to do and something that families should know if they do that, they're really placing their child at risk of SUDEP. So that's why I say certainly if you have a child that's having seizures at all, it's something you should discuss with your physician. If you're having— if your child's having seizures that are not controlled, it's absolutely something you should discuss with your physician.

Oh yes, yeah, because, or as you just said, not taking medication or deciding not to give your child medication. You do need— there are some things you can do and you do need to talk to your physician. Now, I have a question here that people ask me about and I really don't have the answer. and that is service dogs. How does that work, Peggy? How— what does—

go ahead. We have a program to provide service dogs to folks who have seizures. We do not call them seizure alert dogs. We call them seizure response dogs. It is possible that a dog that spends a significant amount of time with an individual would eventually get to the point where they might alert an individual or alert a caretaker before a seizure happens. It's very difficult to train a dog in advance of that because that's— more than likely that would occur after a dog spent a significant amount of time with an individual, and that will only occur if, for some reason, the person having the seizures has some scent that probably is not perceptible to other human beings, but that the dog would pick up on.

We do, however—

there are tons of things that a service animal can do in response to a person having a seizure that are very, very helpful to people who have epilepsy. Emergency. So all of the dogs that we work with, for example, are trained to summon help from other people. They can all do things like hit alarms inside the home to summon emergency help if that's required, if the person lives alone or is home alone, you know, things like the medical alert kind of alarms. They can all fetch medication bags for a caretaker if it's, for example, a child that uses Diastat or some other rescue medication, that kind of thing. We've had dogs that have been trained to work with people who have absence seizures so that, for example, if they would have an absence seizure while they were out in traffic, you know, walking, that the dog would not let the person continue to walk. We even have dogs that have been trained to swipe magnets across a person's chest if they have a vagal nerve stimulator. So the dogs can do pretty amazing things. In order to be considered a service animal, a dog has to be able to perform 3 distinct services for an individual. So it just depends upon the person who is working as a partner with a dog, what specific types of things that dog can do for the person and what they would need the person to do.

Wow, isn't that something though? That's amazing.

Oh yeah. They are amazing. They are really amazing. The thing that I always find most amazing is that more often than not, when the trainers bring the dogs and we try to sort of decide in advance which dogs we think will be best with each of the candidates that we've selected for the dogs. Sometimes the dogs just pick their own person, which I think is always really amazing. I think that's always fascinating. Sometimes we have— my favorite story was one year we had a beautiful, beautiful golden doodle that was was white, and we had a beautiful young woman who was a senior in high school at the time. And we thought, "Oh, Samuel just loved this white Goldendoodle." We also had a young man who was in his early 20s, and we had a German Shepherd. So we were sure that this German Shepherd and this young man were going to be, you know, just the best match. But when they all got in the room together, of course, The German Shepherd decided that this young woman was going to be his person, and the Goldendoodle decided that the young man was going to be his person.

Isn't that something? Well, hey, hey, the dogs reign, right? Absolutely. Before we close the show today, Peggy, once again, thank you for everything you do. Would you mind one more time with that website?

Yep, it's www.eawcp.org. So just remember Epilepsy Association Western Central Pennsylvania.

That's it. Yeah, you heard some of these stories we talked about today. Take time to give back. Take time. It's all about giving back.

And we appreciate anything that folks can give. More than you will ever know.

Well, hey everyone, we're at the end of the show, uh, but we end every show with a quote, and today that quote is, "Epilepsy does not define me," said Tony Coelho. This is Joyce Bender, America's Voice, where disability matters at Voice of America.com. There you go, folks, .com. Hey, be kind. Happy Thanksgiving. See you soon.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.