Accomplishments of EAWCP/Plans for the 2025 Mardi Gras Gala

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.

Hey everyone, welcome to the show today. This is not only the beginning of National Epilepsy Awareness Month. It is voting day, election day, and I hope every one of you got out and voted today. So important to us, to the disability community, so important. And I have to have a special shout out to Richard Roberts in Brazil. Hello, Richard. I hope everything is going well. Hey, Diana Burke in Canada. Uh, Gangyang Cho in South Korea. And really all of my friends from the State Department around the world. You know, it's the U.S. State Department that really is responsible for having me go and talk to people about quality of life for people living with disabilities. And I just want to mention Of course, you know, I live with epilepsy. When I went to South Korea, I told them, "Hey, I want to talk to people with epilepsy." So I walked into this room. There were only 2 people with epilepsy. Everyone else, they were all doctors. So the first doctor, all neurologists, came over to me and said, "Whatever you do, don't say the word epilepsy." because here in South Korea, that is terrible. I mean, there are women, they don't tell their husbands they have this. They hide the medication. I mean, it's terrible. I said, okay, I heard you. I walk up front and I say, hi, I'm Joyce Bender and I'm living with epilepsy and I'm not ashamed. So, you know, I didn't listen to them. That was the whole point. Of me going there. Now, here's what's going to surprise you. Those doctors changed. They had me come back to South Korea to talk about stigma, and they had— they arranged for me to go to their parliament. It's amazing. They became advocates. But there is incredible stigma pervasive across Asia. But to all of you, all of you listeners, thank you so much for supporting me. You know, I have the greatest listeners here and around the world from China, Russia, Chile, Australia, all around the world. Remember, one person, that one person that listens to the show in Saudi Arabia, one person can make a difference. What you do is you go to people with disabilities English-speaking and tell them about this show. One person, one, you can make a difference. And you know what I have to say next, right? Special shout out to Yoshiko. Yoshiko, how do I know you got out there and voted? I know, or you sent it in, or you sent it in because of you and Justin. Justin Dart, the late, great Justin Dart, and Yoshiko is his wife, he was adamant about people with disabilities voting. Adamant. Lead on, empowerment, be part of the revolution. He was adamant because for people with disabilities, this really matters in this election. You have to vote. And thank you, Highmark. They've been the sponsor of this show for years. What a great company. Actually, they had me on KDK Radio, which is in Pennsylvania, last evening talking with epileptologists about my epilepsy and my story. So great. It's always great to be able to talk about epilepsy. Epilepsy. And with that, I am so excited to have my really close friend, the President and CEO of the Epilepsy Association of Western and Central PA, Peggy Beam Jelly, to kick off Epilepsy Awareness Month. Peggy, welcome to the show.

Hi, Joyce. Thanks so much for having me and happy Epilepsy Awareness Month. I'm always excited to be on the show and to with your listeners. And I too voted this morning and am excited about the election and about voting day and certainly about Epilepsy Awareness Day and Month. So thank you for having me today.

You know, I always tell people, if you're going to complain after election and you didn't vote, don't talk to me.

Right, right, right.

Don't talk to me. You have the power to make a difference. That's what's great about democracy. So you have to vote. Uh, so Peggy, what has been happening over the past few years? People want to know more about my guests. Like, the love of the guest, but I don't know that much about the, uh, person that was on your show. So I thought maybe you could just give us a little background. Uh, you know, did you grow up in Pittsburgh? Where did you go to school? What was your first career position? And a few other things I'm going to ask you, but let's start with your background in Pittsburgh.

So I did not grow up in Pittsburgh. I actually grew up in Western Maryland, although I was born in Pennsylvania. My father was a railroader, so we moved around a little bit, but I spent my primarily my childhood in Western Maryland in Cumberland. So For those— for folks who are around here, if you're familiar with Deep Creek, Maryland, it's sort of that, that area. Although that's not what Deep Creek was like when I was growing up, the way it is now. It's a big resort area now. And I actually ended up in Western Pennsylvania because I went to college in Greensburg, Pennsylvania at Seton Hill University way back in the day when it was an all-women's college. So That's how I ended up in Western Pennsylvania, and I've been here now for like 40 years. So I actually ended up getting involved with disability organizations and disability programs and services through legal advocacy because I started out in political science and political public policy advocacy. I originally did work with some congressional offices and with some state-level representatives and state senators, and one of them many, many years ago, 32 or 33 years ago, asked me to get involved with my predecessor Judy Painter, who at the time was trying to secure some state funding for epilepsy services in Pennsylvania. And I agreed to do that and ended up coming to work for the Epilepsy Association at that time, and then got involved with creating some programs and services for people with epilepsy in Western Pennsylvania. So I kind of fell in love with the organization and got very passionate about advocating for people with epilepsy, and I've been here ever since. So I kind of—

you're so lucky, lucky you went to Seton Hill. You know, that very first job out of college, what was that first job, first career job?

My very first position was actually with Legal Services. I, I— they hired me to do some advocacy work with Pennsylvania Neighborhood Legal Services right out of college. And then I went to work with The Arc in Westmoreland County. So I did work with disabilities, but I was doing public policy advocacy, and I was involved with advocating for community services and the creation of the community services system through the creation of the waiver program and those kinds of things many, many years ago. So, um, closing down some of the state centers that were in existence back in those days for folks with intellectual disabilities and those kinds of things.

So thank God. Yeah. Yes. And you know, if you've been listening to the show, and I know Perry would be able to confirm this when she comes on, but over these 21 years, it's maybe only 5 times a year that I endorse someone. And I would say, Peggy, I endorse Peggy Beamjelly. She is the greatest leader. We're so lucky to have her here. She's the real deal. And if you're out there and you're living with epilepsy, I can tell you she's serious about it. She really, really does her best to help everyone. And Peggy, thank God you went to Seton Hill.

Well, thank you very much, Joyce. That's very kind of you.

So what is your role today? What do you do today? And what all does it involve?

Joyce Bender: Today I am the president and CEO of the Epilepsy Association of Western and Central Pennsylvania. So lots of what I do today is kind of administrative, although we're not a huge organization. So I wear many hats, and I have the great fortune of working with a lot of our program staff and our development staff as well. So I get to work with the board. I get to work with the folks that we serve. So I get to do a little bit of everything, which is great. And I've also been involved with the creation of a national organization, which has been really interesting and really fruitful for us, I think, called the Epilepsy Alliance America, which brings together a network of local organizations that are dedicated to providing programs and services in local communities to support people who are living with epilepsy. So I do a little bit of everything, but again, you know, when you're at the top of the pyramid, a lot of times you end up doing a lot of administrative things. So I like to think of what I do as being supportive for everybody in the organization. So I try to make sure everybody has the resources and the tools and the things that they need to do to do their jobs. And to do a good job at what they have to do and to make connections and build bridges for people and that kind of thing.

Well, that is awesome. I love what you've done also with this Epilepsy Alliance. And how do people check that out, by the way? Is there a website?

Sure, they can go to the website, is epilepsyallianceamerica.org. They can check it out. There are a lot of really great things going on with that organization that are new. There's now a national support group happening on a monthly basis that folks might be interested in. Yesterday they launched for Epilepsy Awareness Month, Epilepsy Alliance America launched a new seizure recognition and first aid program specifically for families and for laypersons who are helping to care for someone who has epilepsy. So that's available and that's brand new. They also have a really great school personnel training program that's available online. So there's lots happening with that organization. They are 18 members strong right now. It's very easy to get involved if you're an organization that serves people who have epilepsy. And there's lots of information on the website about how to get involved. So you can become a nonprofit member for as little as $1,000 a year, or you can become a select member and be involved in governance and share in some of our grants that we provide to local organizations and nominate folks to the board and that kind of thing. So there's different levels of involvement as well.

Well, Peggy, what I can't believe, going back to the Epilepsy Association of Western and Central PA, which I am so proud to be the chair of the board of the Epilepsy Association of Western and Central PA, is that it was started now, I guess it's 52, 52 years ago.

Wow.

Amazing, right? And I wanted to ask you how that got started. Of course, Judy Painter, executive director, special shout out to you, really a great person. But people like Froggy, right, right? Were they like involved with all this at the beginning?

So, so the organization was really created by a group of parents who were raising children who were having seizures, who were looking for resources and support for one another. I'm sure that you remember and know Rich Ryan. Joyce Bender, Rich's sister, Polly Bender, had a son who was very severely impacted by his epilepsy. She and some of her friends and family members were the folks who originally brought the organization together and chartered its original membership and that sort of thing. Dr. Patricia Crumrine was a part of that original group 52 years ago. She is still very supportive, still very much a part of our organization. So it was really, you know, families, parent-driven that brought the organization together to begin with. And then when Judy Painter got involved, they really were able to start raising money. And the board of directors at that time were some of the folks that you're referring to: Steve Froggy Morris, Peter Rockwell, Doug— Douglas Dick, Dick Barton, some of those folks who really were instrumental in raising funds to make things available like the summer camp program and expanding some of the services that we were able to provide to families and things like emergency medication assistance and those sorts of things. So, so it, you know, family-driven for sure, parent-driven for sure. And, you know, having consistent leadership and consistent support from the board of directors, certainly blessed to live in the city of Pittsburgh. The corporate community in the city of Pittsburgh has been extraordinarily supportive of our organization always for the last 52 years. We've always depended upon their generosity and they have never let us down.

Oh, I agree. I agree. I agree with you. Well, hey, we're going to get ready to go to a commercial break. And if you just joined, we're talking to Peggy Beam Jelly, President and CEO of the Epilepsy Association of Western and Central PA, as we celebrate National Epilepsy Awareness Month. We'll be right back with Peggy.

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You're listening to Disability Matters. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

Hey everyone, welcome back. If you just joined us, we are talking to Peggy Beam Shelley, President and CEO of the Epilepsy Association of Western and Central PA. As we celebrate National Epilepsy Awareness Month. And before we start again, remember, vote. Make sure you vote. Gotta get out there and vote. So, Peggy, I wanted to talk to you about a couple of the programs, and I know we have so many great programs at the Epilepsy Association, but two I wanted to talk about first is the Respite Program and the Oscar Project, because I know the respite program— what was that, in the last 10 years or something like that? Right. I remember. Could you explain what it is and really why it came about?

So the respite program, we call it Care Share. I'm not sure how we came up with that name, but the program exists because So often we find that parents in particular, but really anybody who is caring for someone who has, the medical term is intractable seizures, but really just completely uncontrolled seizures that don't respond to medication or to treatment, really never get a break. Much like anybody who's caring for someone with a chronic condition or a complex medical condition, Caregivers really need a break. And we hear from a lot of families and from a lot of parents in particular that they don't get the kinds of supports that we all typically get when we have young families and children and, you know, just from natural supports like your sister-in-law or your mother or your mother-in-law, because people are sometimes very fearful of caring for a child or, or a loved one who has complex medical needs and, and certainly very active seizures. So our board of directors decided to create this Respite Care Program to provide medical services or respite care services through existing home health agencies so that families could just get a break for a few hours a year. Usually it's somewhere around 25 hours, but we basically pay for an RN or an LPN, whatever is medically required, so that mom and dad can go to an anniversary dinner, so that mom can go get her hair and her nails done, so that the family can do whatever they want, basically. Spend time with other children, whatever they want to use that time for, just so that they can do that and know that the person in their family who needs care because they're having so many seizures is properly cared for and they don't need to worry about whether or not their needs are being met. So that's really what the program is about, and it's so important for so many people. And just to give you an example, One of the first people that took advantage of that program is a family that I've known for many, many years, and they were the first family that we served. They used their hours the year that their son was a senior in high school. They have a daughter who has very uncontrolled seizures. And they told us after they used those hours that year that it was such a blessing for them because they were able to go to all of their son's senior year activities that we all take for, for granted. His senior night at the football game, all of the honors programs. He was a very good student, so he was in a lot of honors programs, those kinds of things. And his entire academic career, they had picked who was going to go. Would it be mom? Would it be dad? But it was not until his senior year of high school and they had access to this respite care program that they were both able to go to all of those events together and support him both at the same time. So those are the kinds of things that people use those respite care hours for. Sometimes, frankly, moms and dads, you know, single moms and dads in particular, will use those hours if they have medical needs themselves and they have to have a procedure done, um, those kinds of things. So it just, just kind of depends.

Wow, I mean, that is so great because I remember, I don't know who it was, they told you, oh, I get to go on a date with their wife. Because just as you said, uh, maybe your parents don't live next door, or maybe you're a young mother and your mother is still working. Um, whatever the situation is, if you don't have a family member, and then as you said, there are family members that are afraid, right? Then there you are. So I mean, I think that is such— I am so proud of that program. I really am. Yeah. Now, the next program I want to talk about, Peggy, as the chair, I'm telling you, I want to know several months ahead of time when this is going to happen so I can put it on my calendar. And what I'm talking about is the Oscar Project. So do you want to explain that to everyone?

Yep. So the Oscar Project is a program that We have, because of the generosity of the Zupancik family, who set up a special program fund for us to pay for seizure response dogs for folks who have uncontrolled seizures. So the goal of the program is to provide 3 dogs a year, at least 3 dogs a year, to people who will benefit by having the dog, and that having the dog will allow them to live somehow more independently. So typically, until just recently, this year for the first time, we placed a dog with a younger child, but typically the dogs are placed with folks who are looking for some supports to return to work, go away to college, stay in school, those kinds of things. Again, these are folks who have seizures that are not controlled, who have real concerns about leaving home on their own, who are really fearful about using public transportation because they have had seizures on public transportation, those kinds of things. So the dogs are All trained. We use a partner organization. We don't train the dogs, but we have a partner organization that trains the dogs. And they can all do 3 or 4 things, services that are helpful to people who have seizures. So they all, for example, are trained in how to use home alarm systems that are basically like the Guardian Safe Alarm, so that if someone has having a seizure and they are not— they don't come out of it, they're not alert, they're not aware, the dog can hit the alarm with their paw and summons 911 assistance. They all know how to go get help from somebody else in the home or out in the community. They all know how to do specialized things for individual patients. So, for example, if a patient has emergency medication and that medication is located in a specialized place inside the home, the dog knows how to go get that for the caretaker. So the caretaker doesn't have to leave the person who's having a seizure to go get the emergency medication. So it just depends on what the person who's receiving the dog needs. We've had dogs that were trained to help people who have a little bit of cerebral palsy, who maybe need some help with stability, things like that. So we place those dogs once a year, typically in July. And so we see them in July, we see them again in August. And we also provide ongoing training for all of those folks. So they can come back if they're having problems with training for some reason, and they come back at least once every 2 years for refresher training weekends. And to— there's no real certification for service dogs, but to just kind of get recertified through our program for the services that they're providing for folks. So we're very blessed to have this fund that was established by the Zupancik family in memory of their son, Michael Zupancik, who passed away from a seizure-related incident. He did not have a seizure response dog, but he did have a dog that was very close to him, that was very helpful to him when he did have a seizure. His dog was a black lab, a beautiful black lab, and Michael's dog's name was Oscar. So that's why we named the program the Oscar Project. So we've— 19 dogs over the last 10 years.

Well, um, now you all know. Take a guess why I told Peggy I want to know. Because I can't imagine what those children look like when they first meet the dog. Am I right? Are they like over the top?

Oh, absolutely. Well, my favorite thing about the Oscar Project is that sometimes the dogs pick the people.

Mm.

Doesn't happen a lot, but it's happened a couple of times. So it's very interesting. The trainers will— the trainers always meet with the recipients that are selected to receive the dogs. And so just to give you an example, this was my favorite year. We had We, we had somebody who, who raises these very specialized German Shepherds who loves the program and decided that they, they were gonna donate one of the German Shepherds that they usually raise for Homeland Security to the Oscar Project. So that was great. And then we had another dog that was raised from a puppy that was a beautiful, gorgeous white Goldendoodle. So the trainers had decided they would place this beautiful white Goldendoodle with a young girl who at the time was a junior in high school, and the German Shepherd with this young man who was just graduating from high school, who was kind of tough and rugged and, you know, wanted to do some, you know, really crazy things. And of course the dogs came to the first training and came into the room. And of course the German Shepherd went immediately, to the beautiful young woman, and White Golden Doodle went right to Ricky, who was, you know, all decked out in his hunting gear. And nobody was going to separate these dogs from these people. Those dogs just decided, this is my person and this is who I'm staying with. And they are still with those folks.

Wow. Isn't that amazing though? It's— that is amazing. Interesting.

It's really—

with that, with that. That great story. We're going to get ready to go to break, um, and then we'll be right back with Peggy. But right now it's our news break while another one of my favorite people that you hear all the time— as a matter of fact, I'm sure she could go places and they know her by her voice— and that is our newscaster Perry Jude Radesik. And I'm so proud of Perry. I'm so proud we do this because we don't have a CNN to go to here about national news, but we have Disability Matters with Joyce Bender and Perry. So Perry, welcome.

Joyce, thank you. And you mentioned it earlier in the show, it is our general election here in the United States. We're in the 2 o'clock hour if you're joining us live here on the East Coast. Polls close in Pennsylvania at 8 o'clock. This evening. Now they might close at a different time in your state. In fact, Georgia, I think, closes at 7:00 PM. So we could have some early results from Georgia. This morning, Joyce, here in Pennsylvania, we heard that lines are long and they continue to be long into the afternoon. So if people thought they were gonna miss the line, go at 10 o'clock or go right after lunch, be prepared because you still may be waiting in line to vote. Joyce, listen to this. According to the Secretary of State's office here in Pennsylvania, 9.1 million people are registered. 2.1 million people, almost actually 2.2 million, asked for a mail-in or absentee ballot. 83% of those have been returned already.

And there's—

this is— yeah, as of 4 o'clock last night, 83% have been returned. They still have all day today to, for the post office to deliver those absentee and mail-in ballots. That's actually about 20% of all registered voters in Pennsylvania have already voted. That's, I think, a good number for Pennsylvania. That's remarkable. Yeah, it is. Wow. But here's the thing, let's say you got your ballot Saturday. Or it came yesterday, what do you do? Like, we've gotten calls about that. So here are 3 things you can do. One, just take the whole mail-in ballot. Don't put it in the mail today, please. That's the last— that's— you, if you do that, your vote won't be counted because it's not going to get to the Elections Department by this evening. So you can't do that. You have to take that whole package and go to your polling place. It's probably the best thing to do. They'll cancel that ballot, give you another one, and you get to vote today. That's one. Uh, you can fill it out and take it to a drop box or have a designated agent take your ballot to a drop box if your county has one. The other thing you can do is take the whole package to your county elections office and drop it off there if your county doesn't have a drop box. Those are your choices. If you have a mail-in ballot that you haven't mailed yet, you, you got to do one of those three things here in Pennsylvania. If you're going in person and you're waiting till the end of the day, 8 o'clock rolls around, just stay in line. If you're in line by 8, you get to vote, right? If the lines are long and you need an accommodation, you can't stand for 2 hours, Ask someone up front to let you in, and that should be your accommodation to be able to go ahead and vote ahead of everybody else. If you cannot stand for 2 hours, it's okay. That's an accommodation that is allowed. Now, here's the thing. If you got any barriers to voting related to disability or really race, religion, anything, call 866-OUR-VOTE. 866-OUR-VOTE. There are volunteer lawyers across the nation and here in Pennsylvania that are ready to resolve any issues that come in. And we generally see, like, issues related to the accessible voting machine not being set up, the accessible door, the accessible entrance is locked. And so then we have to be able to call the county and resolve that issue. But we can't do that for you unless you let us know, and you do that through 866-OUR-VOTE. Joyce, let's say you were planning to go to vote this afternoon and all of a sudden something happened and you're in the emergency room. Like, okay, polls are closing at 8:00. What do you do? Well, Pennsylvania, like many other states, has an emergency absentee ballot that you can designate someone to help you go get and then you can vote. It's a little bit complicated, but we have a link on our website to that information for Pennsylvania that you can walk through that checklist and make sure that you get to vote and have someone help you go ahead and vote if you find yourself in an emergency situation. So advocacy matters. The best way to have your voice heard today is to go vote. Call 866-R-VOTE. If you have any problems, if you need a hotline in a language other than English, including ASL, go to our website. We have a list of every hotline in numerous Asian languages, Spanish, Arabic, ASL. We can help you out with that hotline. So your issue gets resolved.

I have a few questions, Perry. Uh, that voting where you said to call in, OurVote, 866-OUR-VOTE. Is that O-U-R? Okay, yeah, O-U-R. 866-OUR. Um, and I, I had a couple questions. One, what if you go to vote and you're a person who needs an accessible voting machine and they say they don't have one or they say it's broken, then what?

Yeah, well, uh, oh, we'll get one to you. So don't leave the polling place without voting. That's number one. You have a right to vote privately and independently. Don't leave the polling place. Call 866-OUR-VOTE, our vote, and we'll get an accessible machine out there Counties usually have an extra one just in case something happens, or they have an IT person that will go out and fix that machine. So just don't leave the polling place. You wanna vote. If you call us, we'll get it addressed promptly, like immediately. You call us, it'll get addressed with the county, and we'll either get an IT person out there or get another machine dispatched to your polling place.

Okay, now make sure you don't leave. And as Perry said, if you can't stand for a long period of time and they don't have that machine, I would go up front, say, hey, I don't know how long this will take, it could be hours, and I want to vote, but I can't stand all this time, I need a chair to sit down. Absolutely. Don't leave though. Do not leave because they by law have to. Provide a way for you to vote. Absolutely. And if maybe it's in some rural area and it's really not accessible for a wheelchair, or where they tell you to go in is a very difficult way to get in, do they call 1-866-OUR-VOTE again?

Absolutely, because then we can get dispatched Maybe it's, you know, in a church in a rural area and the church has done its best to become accessible, but, you know, there's still a curb. So we can get dispatched a temporary modification that is a ramp if we call that county and say, "Hey, you need to get a temporary ramp out there so someone can get up and go in and vote." Unfortunately, in Pennsylvania, we do not have curbside voting. So the only thing you could do is not leave, call, 866-OUR-VOTE and, uh, and let us try to resolve that issue as quickly as possible for you.

Now, last presidential election, some people with disabilities went to vote, and I know this is terrible, but there was a pickup truck and the person there had a rifle not pointed at them but standing out there, and they were afraid. Now in that case, do they do the same thing or do they call 911? I mean, what do they do?

No, I would call 866-OUR-VOTE and let the lawyers handle that situation. That absolutely is voter intimidation and harassment. And there may, you know, depending on the polling location, you know, you can't have a weapon. At a polling location. You just can't. And so let the lawyers handle that, and they'll call the county, and maybe the county sends the sheriff. The county might have somebody on standby already that is a law enforcement officer to go out and handle that situation.

But any type of intimidation, 1-866-OUR-VOTE, no matter what, You make that call and you stay somewhere there, or tell them you have to go inside because you're nervous, whatever, but don't leave. And Perry, what is your website at Pennsylvania Disability Rights of PA? What's the website?

Yeah, thanks, Joyce. It's www.disabilityrightspa.org. That's disabilityrightspa.org. Org. You go about the middle of the page, click on today's advocacy matter segment, and you'll find all of this information and all of the hotlines.

Okay, thank you so much, Perry. And stay with us, Perry. I am, in case we have another question for you.

I want to hear the rest of Peggy's story.

Yeah, well, Peggy, is it that though sad that I even had to say that?

Absolutely. But I'm so glad that you asked the questions, and I'm so glad that Perry is here to give people that information. And I hope, I hope, I hope that people will not hesitate to call if they see any voter intimidation at all.

Yes, any. Okay, well, Peggy, another thing I love that you do for kids with epilepsy is the camp. Camp, which I've been to it. I think it's so awesome. Could you talk about that program that you have?

Sure. So our summer camp program is called Camp Frog. A lot of people don't know this anymore, but it's named after Steve Froggy Morris because he raised so much money through his golf tournament for so many years for the camp program. The program basically provides just a summer opportunity, summer overnight camping opportunity for kids who have epilepsy and seizures. We basically take a pediatric neurologist from Children's Hospital comes to camp with us. We take a nurse with us. They supervise all of the medical needs, all the medication administration. If anybody has any problems at camp, they need to be evaluated if they have a seizure or something at camp. They're there that the kids don't have to leave if they have a seizure, that kind of thing. And then we do also put some additional counselors into the environment, but otherwise we're just going to camp with kids who have epilepsy with other kids who just happen to be at camp. So if there's a cabin of 10-year-old boys that are at camp. There might be 10 kids in a— 10 boys in a cabin, you know, maybe 2, maybe 3 of those boys might be children who were there with Camp Frog. The rest of them are just boys that are registered for camp that week. We usually go to Camp Fitch, which is up on the shores of Lake Erie. It's beautiful. Last year it was really, really hot, but the kids love it. It's a great opportunity for them to make friends. They make friends from all over the state and sometimes all over the country. It really is a wonderful opportunity for them to learn some independent skills, and it's a break for mom and dad. It's one of our oldest programs. And we— everybody loves it. Everybody loves it.

When is that usually, Peggy?

What month? It's typically either the week before or the week after the 4th of July. It's usually somewhere right around the 4th of July. We try to not be there over the 4th of July weekend or over the 4th of July itself. This year, I think we're going to be the week after the 4th of July. But it sort of depends. The camps don't all have a lot of weeks that include the high school campers because a lot of the kids don't want to go to camp anymore once they get to high school. So we want to be able to take all the kids, even if they're in high school, if they still want to go to camp. So our, our weeks are a little bit limited. So, but we have scholarships available for anybody who wants to go to camp. So not having the financial ability to pay for the fees at camp or never a reason for a camper to not join us.

Now, do you get a lot of the kids there, or do they go on— how do they get there? Because you said it's in Erie, right?

It depends on where they live. So we do take a bus from here in Pittsburgh. So if kids are from the western part of Pennsylvania, um, they can come and meet us here at the Pittsburgh office, and we take a bus bus full of kids and supplies and sometimes counselor too from the Pittsburgh office. If they live in that area, we don't make them drive down here to, to go back up. We just meet them there and we have a drop-off point there where we meet them.

So it just—

excuse me— sort of depends on where they live and what's more convenient for their parents in terms of drop-off and pickup, that kind of thing. But it's A week.

Why, I'll have to get on that bus, just do some singing and get everyone with choruses as we go up there. Okay, well, I do hope I get to go because I love that. And you know what, you have that Disability Pride Month, which is even better because of course July ADA, July 26th, but that is nationally Disability Pride Month. Which is so, uh, just awesome. Now the next question I have, actually I was asked, if a family, uh, is— does not have the means to get medication, do we do anything about that?

Absolutely. So typically what happens is if somebody loses their insurance is recently diagnosed and doesn't have insurance or doesn't have prescription coverage, that sort of thing, we do have an— we call it an emergency medication program. We will provide payment for a 30-day supply of someone's seizure medication or anti-epilepsy medication, and during that 30 days we will work with the family to provide or find a long-term solution to that issue. So for children, it might mean helping them find better insurance through one of the Pennsylvania programs. Maybe they would be eligible for something called the Medicaid loophole, where even if the rest of the family isn't eligible, for insurance through Medicaid, the child might be by virtue of the child's disability. So we don't just pay for a month's worth of medication and say, well, you know, good luck seeing how you can figure this out next month. We will work with folks to figure out what's the best way to find a long-term solution to this. So every situation is very different. Everybody finds themselves in this, in that predicament for different set of reasons. Oftentimes I find that people will just, it's like a paperwork problem. So sometimes people just need some help because, you know, some kind of paperwork got kind of crossed up and something didn't get filed that needed to be filed or something. So It's usually, we're usually able to help people find a long-term solution to the problem during that 30 days.

That is a wonderful thing, Peggy. And so if this is you in Western Pennsylvania or in Harrisburg, make sure you get in touch with the, and you know what, I didn't ask you, what is our website?

Our website is www.eawcp.org.

Okay, and by the way, when you go there, there's a donate button, so we— I would appreciate a donation, uh, no matter how small. Everything matters. Well, Peggy, you know one of my favorite things is the best party in Pittsburgh, the Mardi Gras. So I wanted you to, uh, share with everyone— and by the way, this is a fundraiser, it's black tie And it's a fundraiser for what we just talked about, all those programs you just heard about. And I wanted to know, when is it going to be held? How do our listeners, if they are in this area, attend? Or if someone's listening and it's a business person and they want their company to attend, you know, how do they do that? How do they donate? And who is the king?

Okay, so let me start by saying that it is the best party in Pittsburgh, even if it's one we plan. But we're really, really happy and honored that Tim O'Brien, who is the co-chief executive officer of PJ Dick Trumbull and Lindy Paving, has agreed to serve as our Mardi Gras King for 2025. We're really excited about it. He is a fantastic individual. He's done so much for the community, and we're so happy to have a chance to honor him. He has also recruited some phenomenal dinner chairs to work with us. He's asked Jeff, and they have agreed, Jeff Broadhurst from Eaton Park is going to join us as a dinner chair. He, of course, is one of our past honorees. Jay Cleveland from Cleveland Brothers is going to serve as the dinner chair. Joe Rossini from PNC Bank is going to join us, and Jeffrey Troutman is going to— I'm sorry, Joe Rossini from the Rossini Group is going to be a dinner chair, and Jeffrey Troutman from PNC Bank is going to join us as a dinner chair as well. So we really have a powerhouse this year in that group of dinner chairs, and we're really, really excited and grateful to have all of them joining us. The event is on Saturday, March 1st, which is a change for us. We have always done the event on Tuesday, on Fat Tuesday, but this is our 31st year. And so we're going to change it up a little bit and see what happens if we have it on Saturday. So this year it's going to be on Saturday, March 1st. I know that a lot of the doctors in particular have been really happy to hear that we're having it on a Saturday because they usually have to leave right after dinner because it's on a Tuesday. So we'll see how that goes, but I want to make sure people make that— mark their calendars for that change. And anybody who wants to get involved can do that by visiting our website, which I just gave you. I'll give it to you again. It's www.eawcp.org. If you are a company and you'd like to get involved, our sponsorship opportunities are listed on the website. And typically we sell tables to the event to companies and corporations. Individuals can come to the event and buy individual tables if you're interested in doing that. I would encourage you to get in touch with either me or Colleen Folkerson if you would like to purchase individual tickets. You can do that through the website as well.

You got to go. You've got to go or we're going to send Colleen Folkerson after you, who works for the Epilepsy Association, is behind this and fantastic. But you— this is really a great— this is a great thing for a great cause. Well, Peggy, we've come to the end of the show. What message do you want to leave with our listeners?

I think be optimistic, be positive. As Vice President Harris would say, dream big.

Dream big, as she said. Move forward. As she says, not back, move forward. Um, well, that brings me to our quote that we're going to end the show with. This perfect quote. Justin Dart Jr., who I talked about earlier, said, go out and vote as if your life depends on it. Because it does. Vote as if your life depends on it, because it does, especially for people with disabilities. If you haven't voted, get out there and vote. It's so important for you. Vote. Um, and in the words of Mary Brooker, when you go out today, remember, choose joy. This is Joyce Bender America's Voice: Where Disability Matters at voiceamerica.com. And next week we'll be back as we continue to celebrate National Epilepsy Awareness Month. Talk to you then.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11:00 7 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.