Beem-Jelley/Fulkerson: Services of EAWCP and 2023 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, to all of you in the United States and around the world. And you know, I have to start by giving a shout out to Yoshiko Dart. Yoshiko, you know I just love you. Yoshiko is the wife of the late Justin Dart Jr. And so, Yoshiko, special shout out to you. And then to my good friend Richard Roberts from the State Department, and he is in Brazil. Before that, when he was in Japan, they did a show. So if you go to past shows, you can hear the live from Japan and soon from Brazil. And you know, what can I say? He's awesome. He is just a wonderful, wonderful person. Love him so much. And Gang Young Cho in South Korea, special shout out to you, Gang Young. Thank you for sending me those photographs. They are awesome. And to Cheryl Harris, who is with the US State Department, And prior to that, Tunisia, a special shout out to you. To Venyamin in Kazakhstan, and to all of my friends in Indonesia, Libya, Nigeria, Austria, all of you that have either been in person or talked to you Just special shout out. Now, we have listeners in 17 countries. Can you believe that? From China to Austria to Mongolia to Finland. And so I told one of our guests today, Colleen Fulkerson, happy birthday. Now, all of you around the world will know it's Colleen's birthday. Today. So Colleen, you will never get this much press for your birthday as you did today. And I also have to have a big thank you to Highmark, who has been the sponsor of this show for years, and they are just a wonderful company. Wonderful, wonderful company. Well, we are kicking off National Epilepsy Awareness Month. So I'll go first. I am a woman living with epilepsy, and I'm not ashamed. I'm living with epilepsy, and I'm so proud to be the chair of the Epilepsy Association of Western and Central PA. And today we have the president and CEO of the Epilepsy Association and the special events coordinator. So Peggy, our President and CEO, welcome to the show. And Colleen Fulkerson, our birthday girl, welcome to the show.

Thank you so much.

Well, hi Joyce, how are you? Happy Epilepsy Awareness Month.

Thank you. And actually, Peggy, tell everyone where you are right now.

Joyce, I am in a very magical place. I am at Walt Disney World. Disneyland in California, Anaheim, California, at the Epilepsy Awareness Day in Disneyland. It is an incredible event. There are approximately 5,000 people here, about 2,000 people who are living with epilepsy and about 3,000 family members and caregivers. It's an unbelievable expo for families to visit vendor tables, community organizations who are engaged in supporting families who are living with epilepsy and dealing with epilepsy every day, and folks who provide support and services to them and medical providers. It's also an opportunity for medical providers to attend continuing medical education learning workshops and events and a whole series of— there's like 60 opportunities for workshops for patients to attend free learning workshops and events. It's just 2 unbelievable days of learning and support and networking and camaraderie. Last night, there was a masquerade ball for the children. Like 1,500 kids attended. It's just an unbelievable event of love and support and celebration of epilepsy. So honored to be here. I am here as part of the Epilepsy Alliance America. So happy to be here and just an amazing program and event for people who are living with epilepsy.

That is awesome. Think about that many people. Isn't there a family or someone that started all of this?

There is. There's a— the Levy family, a gentleman whose name is Brad Levy. He and his wife, in honor of and to give back their daughter Sophie, they started an organization called Sophie's Journey. Their daughter, Sophie, was diagnosed with epilepsy as a younger child, and she actually had surgery which has controlled her seizures. She was very fortunate that the epilepsy surgery that she had here in the West Coast— they're from California— was successful and has controlled her seizures. And their way of giving back was to organize this epilepsy awareness event and engage the epilepsy community and increase epilepsy awareness and bring all these folks together to put this event together. This is the 10th anniversary of the event and every year it grows in size and it's just unbelievable. So, they are now working with the Epilepsy Alliance of America to hopefully help increase awareness of the event and bring additional families. The Epilepsy Alliance America, for example, and its member organizations sponsored about 20 families to attend this year that maybe couldn't otherwise afford to attend. So we hope to expand that kind of sponsorship and bring even more families from other parts of the country to attend the event this year or next year.

Now, Peggy, how many days next year? Okay, what are the dates?

Through November— October 30th through November 2nd. Um, the final day of the event, everybody goes over to Disneyland and they take a huge picture. Um, this year they're taking it at Cinderella Castle. The picture location kind of moves around a little bit, but, um, it's just a It's just so phenomenal to see everybody here and supporting one another. And as you know, Joyce, there are many places around the world and certainly around the United States even where there are not local organizations to support people who have epilepsy. So oftentimes folks are coming here and it's like the first time they've ever met another family who are raising a child with epilepsy or the first time that they've had an opportunity to really experience support in a large group setting. And so, it's really a phenomenal opportunity for a lot of organizations to actually reach out to people and let them know that there are other people to support them.

Oh, that is fantastic. Absolutely fantastic. And, you know, what you just said is so true. People feel isolated. They don't know there are other people and other families like them. And it just changes everything. Even me, I can be at a restaurant or anywhere, as soon as I tell someone I'm living with epilepsy, "What? Oh, I am too." I mean, that's just how it is. And that's why I hope this month that everyone does spread the news about epilepsy Since there are over 3 million people in the United States living with epilepsy, 1 in 26 in their lifetime will have epilepsy, and yet it's so in the shadows. People don't realize this is such a big thing. Hey, before we talk more, I wanted to ask you about that Epilepsy Alliance. Can you tell our listeners about that?

Sure, sure. The Epilepsy Alliance America is a national organization that has brought together local organizations that support people who live with epilepsy and the families who care for them and provide local supports in local neighborhoods and local settings, services and supports and local education around epilepsy. It is a fairly young organization. It was founded in 2018 by a group of 8 like-minded organizations from across the country. The Alliance now has 17 members, and there are 3 other organizations that are in the process of making application to become members. So there are members kind of scattered across the country right now. And the point is to engage all of those organizations in increasing their effectiveness in serving the needs of people who have epilepsy. It's really been a blessing for us locally at the Epilepsy Association of Western and Central Pennsylvania to have those other organizations to help us in terms of sharing best practices and having other organizations that we can work with to kind of coordinate some of our national models for programs in terms of things like education in schools and bringing together advocacy around education in the schools for school personnel and things like that. So, again, it's a fairly new organization, but it's been really effective, and we're really, really happy and proud to be a part of it. And proud to have been one of the founding organizations.

Yes, I am also. And I think you're moving up into a leadership role. Am I right?

Yes, that is correct.

Like chair?

I am. I am slated to be the chair in January, yes.

Well, they couldn't have a better person. I want to mention, if someone is in one of the states and they want to know more about the Epilepsy Alliance, what do they do?

They could certainly check out their website, epilepsyallianceamerica.org. They can also get in touch with me, Joyce Bender, at the Epilepsy Association of Western and Central Pennsylvania. And folks should know that you are also a member of our National Alliance Board of Directors, which we are very grateful for. And we're happy to talk with you. We have a couple of different membership levels, so no organization is too small to talk with us. No organization is too large to talk with us. The point of our organization, again, of the Epilepsy Alliance of America, is to just bring the epilepsy community together. Our philosophy is that we are stronger together and that we can engage the community more effectively if we're working together. So— Yes. —we want to lift local organizations and increase capacity of local organizations because that will allow us to serve more people.

Yeah, absolutely. Well, Peggy, I like to start every show with talking about the person because as you just heard, we have listeners not only throughout the United States but around the world. So, and once again, this is National Epilepsy Awareness Month and we are kicking it off with the CEO of the Epilepsy Association of Western and Central PA headquartered right here in the best city in America, Pittsburgh, and the best affiliate while I'm at it. I am with Colleen Fulkerson, the special events coordinator. So let's start with your stories, you know, such as where you grew up and went on to school and how you became an epilepsy advocate so people know more about you. So Peggy, we'll start with you and then move on to Colleen.

Okay. So, I grew— I actually was born in Pennsylvania, but I grew up in Western Maryland, in Cumberland, Maryland, and left Western Maryland to attend college in Greensburg, Pennsylvania at Seton Hill. And I just kind of stayed in Western Pennsylvania because I fell in love with the community. I I sort of started out my career in legislative offices, first in a congressional district office and then worked with a state legislator. And then I became a public policy advocate for a local Arc chapter. And I worked there in public policy advocacy for about 7 years. And then somebody introduced me to the epilepsy community. And I got connected with the epilepsy community and just sort of fell in love with developing programs and supports and services in Western Pennsylvania for folks with seizures and working with families who are facing the challenges of raising children with epilepsy. And that was 29 years ago, Joyce Bender. I found a home with the epilepsy community and I've been there ever since. So I first was a program coordinator with the Epilepsy Association and then I became an associate director and I'm now the CEO. So I've been working with the epilepsy community for 29 years now. And have loved every bit of it.

Well, we love you. And a special shout out to Judy Painter, who I know will be listening to this show. And Judy ran the association, but her right arm was Peggy, who has now been the CEO for several years. How many years has this been already?

Um, 8. Yeah, I'm in my 8th year. Oh my goodness. Yeah.

Wow, this time go fast.

What month did you start?

Yeah, what month did you start? Uh, March. March, 29 years ago.

I started, I started in, um, I started originally in December and then I started as CEO in March.

Okay, but I mean, you started with the Epilepsy Association 29 years ago. What month was that? Right, that was December. Okay, so we have a big thing that'll be going on next year, 30-year anniversary. How about that? Well, then we have—

I don't know, that makes me kind of old, Joyce.

Oh, the older the better, right? And then we have our birthday person with us, Colleen, who is, I must say, spectacular. I mean, she is the queen special events person. She does a phenomenal job. And Colleen, how about you? How about if you tell everyone your story and how you ended up becoming an epilepsy advocate?

I grew up south of Pittsburgh in a small tiny town called Elrama. And then I— when I graduated high school, I went to Edinboro University of Pennsylvania, which is a state school up near Erie, Pennsylvania. And I have a degree in, you know, focusing on public relations, advertising, communications, and So when I got out of college, I knew that I wanted to work for a nonprofit organization. I did not have a personal epilepsy connection at the time, but one of my friends that I had grown up with, I'd known since first grade, was working at the organization and reached out to me and said, "Hey, we have an opening for a special events coordinator. Are you interested?" And I had two parents at home that said, "You need a full-time job." So I came and interviewed for the position and Judy Painter made me a special events coordinator. I did not have any event experience at the time, but I have been with the organization for 19 years and I have stayed with the organization because I have met so many incredible families, and I believe in the work that we do. And I'm very fortunate to be, you know, that my professional role, that I get to see a project from the absolute beginning and work it all the way through till the absolute end. And I know that the money that I'm working to raise has a purpose. I know that my job has a purpose, and I know that the money that we raise is doing a lot of work in the epilepsy community.

Well, speaking of raising funds for a great reason, Colleen, what is the date of the Mardi Gras and can you tell our listeners about it?

I could talk for hours about the Mardi Gras Gala. So our Mardi Gras Gala is a very unique fundraising event here in Pittsburgh. It is a black-tie, primarily corporate-sponsored fundraising event that honors a corporate community leader for their work in the Pittsburgh area. So we are so excited. I'm looking to be back on track and follow a normal schedule and have a great year. So our Mardi Gras Gala is held on Fat Tuesday. And that is February 21st of 2023. And we are honoring— we have a king and a queen this year. We are honoring Charlie Batch and Tasha Wilson-Batch.

Charlie Batch. Okay. I know you black and gold fans know who that is. Former Steeler, um, and I want to just tell you, Charlie Batch is just a great person. He is just a good human. Uh, Peggy, for a minute, you went to their foundation, and could you talk about that for a second, what they do?

Absolutely. They have, um, founded and run a nonprofit organization called the Best of the Batch Foundation, and they do a ton of work in their community supporting families in need. And they recently started a capital project building a new community center in the Homewood area of Pittsburgh. And they do a ton of different things, starting with an afterschool program for children. The new facility has a gorgeous basketball court that also offers facilities, for example, for the Silver Sneakers group. So, during the day when the kids are in school, older folks in the community can come in and use the indoor walking track to walk. It has like a library space and study space, although they've done a fantastic job of making it just look like lounge areas and fun places to hang out so the kids don't feel like they're back in school again when they get there after school. It has like a kitchen area and a laundry facility so that they can teach things like home ec skills to the kids because the schools are no longer offering things like home ec classes anymore. So they're teaching cooking and laundry skills and things like that to the kids. It even has partnered with UPMC medical facilities to provide primary care services, healthcare services to families if they're needing that because there are so few primary care service options in that community. So, you know, for example, if somebody needed access to something like an urgent care service that we all take for granted these days, like in my community, there's one basically every couple of miles where you can go in instead of going to an emergency room if your child has an ear infection on the weekend or something like that. Those just simply are not available in that community, but they— the Best of the Batch Foundation has one now that's available. And otherwise, these families who often don't have their own transportation and they're relying upon public transportation they would need to get on 2 or 3 buses and transfer 2 or 3 times and go to 2 or 3 communities away in order to get to like an urgent care, primary care facility. So, it's just— I mean, this facility at the Best of the Batch Foundation is just incredible. It's just an amazing comprehensive community support, family support program. In addition to that, they do and have for many, many years provided just an amazing Christmas holiday support program for families where they provide a food and nutrition program at Christmas where they do holiday meals and Christmas gifts for up to 150 families. Wow. Which is just an unbelievable number to me. And they do like 9 or 10 gifts per child. So they, um, collect the gifts, they wrap the gifts, they deliver the gifts, um, and then they also do, um, a big laundry basket kind of thing that's filled with all of the pantry items that you would need to do a very large holiday meal, including, Joyce, a new set of dishes and silverware and things like that. So, you know, oftentimes these are families sometimes that are displaced because of a number of reasons, but oftentimes they need things like that as well. So, it's It's just incredible to me that this one couple have been able to get the community to rally around the needs of folks in that community and put this foundation together to support, in particular, the children there. And, you know, really address their after-school needs and do it in such a comprehensive way. They're just an incredible family.

And just so you all know, especially you people that don't like the Steelers, yes, he was the backup quarterback and for several years. And guess what? It's the two times he got that Super Bowl ring. Charlie Bass. Yeah, he has two Super Bowl rings. Yes, that's right. But what's more important is that he is the king and his wife is the queen of the Mardi Gras. And we're going to talk more about the Mardi Gras in a minute, but right now I have to go to break, our news break, with our own Perry Jude Radesik, CEO of Disability Rights Pennsylvania and a well-known national disability rights leader. Who, Perry, you've done the news for Is this 5 years?

I think we're in our 5th year, Joyce, yeah, together. How about that?

I'm so thrilled to have you. Well, Perry, let's hear the news for today.

Thank you, Joyce. Well, we've got a deadline coming up for individuals to support the Center for Medicare and Medicaid Services and their effort to try to simplify eligibility determinations for Medicaid and CHIP. And that deadline is Monday, Monday, November 7th. So here's what's happening. In September, CMS, which we call the— which is also known as the Centers for Medicare and Medicaid Services, issued a Notice of Proposed Rulemaking. And in that notice, they decided to simplify the process for eligible individuals to enroll and retain eligibility in Medicaid and the Children's Health Insurance Program called CHIP. Now, CMS has found over the years that there continues to be unnecessary administrative burdens for states and continued barriers to enrollment and retention of coverage for people who are eligible for Medicaid and CHIP. And if you remember, Medicaid was established in 1965. It provides free or low-cost healthcare coverage to low-income individuals and families, uh, to meet the needs of children, pregnant individuals, older adults, and people with disabilities. So this is important for people with disabilities. CHIP was established in Pennsylvania in 1992. It wasn't until 1997 that the CHIP program went nationwide and a law was signed into law by President Bill Clinton. So it's only really nationally been around since 1997. Over those years, again, some progress has been made in simplifying eligibility, re-enrollment, and renewals for applications. But if anybody knows anything about applying for Medicaid or CHIP, those applications can be really long. Here in Pennsylvania, A Medicaid application can be 80 pages long, and even the renewal can be really long. So the Biden administration is looking specifically at regulations that may not provide really clear timelines to return information or provide guidelines for states to process and act upon those eligibility determinations once they receive it. These results are often unnecessary delays in the processing of application and renewals. In addition, COVID-19— if you remember, Medicaid requires continuous coverage requirements. That could come to an end if the COVID-19 federal emergency goes away. So, there are also in this proposed rule critical changes that could help reduce coverage losses as states begin to act on eligibility redetermination for millions of people across the country. Joyce Bender, we always say advocacy matters. We encourage individuals to support CMS's efforts to simplify eligibility determinations. Again, the deadline for comments is Monday, November 7th. We always try to make it easy for your listeners to comment on things like regulations. And if you go to our website at disabilityrightsPA.org, click on today's segment, you'll get more information about the proposed rule, and you'll get taken to a place called whymycarecounts.org where you can read a little bit more about it and go right to the link to make your comment on the proposed rule from the Centers for Medicare and Medicaid Services.

Okay, before you go, Perry, Peggy, what do you think about that?

I think that is incredibly important, Joyce Bender, and you know why? There are so many families who depend upon CHIP because they are just over the Medicaid amount for typical Medicaid coverage. So, if you don't apply for— if you're not eligible for typical Medicaid coverage, and I mean, you can correct me if I'm wrong, but there are a lot of families who depend upon CHIP because they can't afford typical coverage, right?

That's right, Peggy. You're absolutely right about CHIP. It's been a real bridge to health insurance for families that are just above the Medicaid limit.

Right. So, I mean, and I know a lot of families who are like, there's only one parent. So, I mean, if something happens and CHIP goes away, that's going to be a huge crisis for a huge number of families in Pennsylvania. And a lot of those families are families of children who, you know, have disabilities in particular. So, you know, it's really critically important, not just in Pennsylvania, but I think probably across the country.

And Perry, what would be the possibility of that happening?

Well, I don't think CHIP would go away, but we are very concerned about the Federal emergency declaration for COVID-19 ending, and then everyone will have to go through an eligibility redetermination with millions of people that could lose coverage. So that's what we're concerned about. It won't go away completely, but we are concerned about the loss of coverage, and this proposed rule helps to address those issues as states begin to act on those eligibility redeterminations. So I really want to encourage I encourage your listeners to go to disabilityrightsPA.org. Our Advocacy Matters segment is up on our homepage already. Click on it for today's segment and look at the proposed rule and go to whymycarecounts.org. We have a link to it and you can easily fill out a comment card for CMS. All right, good job.

Hey, thank you so much, Perry. Look forward to talking to you next week. Absolutely. Take care. I don't think people realize, you know, these things.

They know and they don't realize, Joyce, that they won't have insurance while the redetermination thing is going on. If they get— there's this like loophole that happens because what happens is then they call us when they don't have coverage for their medication. Which is terrible. So, that's— right.

This is why—

I mean, we, of course, do everything we can to help them, but that medication is so important and it's so, so expensive so often. So, I mean, I was writing feverishly as Perry was talking. So, we will definitely follow up on that and do as much as we can to encourage people to support that.

Yeah, and go to— listeners, go to disabilityrightspa.org and go to that page Advocacy Matters. But these things do matter, you know, it can impact you. So make sure you— as I always tell people, if you're listening, you're thinking, oh my goodness, I wish this friend of mine with epilepsy had heard this show. They can. Spotify, benderconsult.com, voiceamerica.com. You can hear all these prior shows and share the podcast. So I'm coming back to you, Colleen, the Mardi Gras. How would you— could you just describe what it looks like, not to mention the chocolate martinis? Could, could you describe it?

So the Mardi Gras gala, we do our very best to bring the New Orleans atmosphere to Pittsburgh. Our event is held at the Westin Pittsburgh, which is the hotel attached to the convention center. And, you know, February in Pittsburgh is not always a beautiful time of the year, so we incorporate our purple, green, and gold in just about everything at the Westin. We have a ceiling full of purple, green, and gold balloons. We provide Mardi Gras beads and feather masks and boas and sequin hats and sunglasses to all of our event attendees. Once guests arrive, we do not have any auctions or raffles. We just want people to come and have a fun time fun time. So the event is primarily a corporate-sponsored event. And for so many years, many of our sponsors do come back year after year and say what a great event it is to also bring their clients. You know, they will bring clients to be guests at their table. Other companies have said, you know, this is something that every year our employees fight over who gets to fill our table. Because we, you know, being on Fat Tuesday, our goal is to fill everybody's indulgences before we go into Ash Wednesday. So like you said, we do have our chocolate martinis. We have a Champagne Girl. So she has— she's a strolling Champagne Girl. So she has a ball gown on that has 125 champagne flutes that go all around her dress and she will stroll around the cocktail reception. Our honoree and dinner chairs will come through to kick off the night with a parade that is led by the Dixieland Band. They will throw beads to people. I have seen, you know, very important CEOs from our city, you know, kind of throw an elbow to get to those beads. And then once everybody comes into the ballroom, we work every year with our favorite designer, Kevin Wilson, to make our ballroom fun and unique. And, you know, I love to stand at the doors when we open those ballroom doors to let guests in, especially if it's their first time to attend the event. I love to hear them gasp and ooh and ah over the event. And then John Parker is our dance band that plays during dinner, and then everybody gets on the dance floor to celebrate throughout the evening. We have a sit-down dinner that is Cajun-inspired. So, you know, we will throw some spice into that dinner. We have lots of confetti. And it just, it's a really great night. It's a great opportunity to bring attention to Charlie and Tosha Batch. You know, I know that the first thing that we always talk about is that Charlie was a former NFL player, but the two of them are just such spectacular people. We are so fortunate to have them in our community. Charlie grew up in Homestead and has just, you know, has seen the need in his community and has stayed true to his community. And, you know, he and Tasha have just worked worked so hard to create this organization. But they don't just work at Best of the Batch. I mean, they do— there's so much more to them. So it's really an honor to be able to honor them as the king and queen. And if somebody wanted to purchase a table for the event, they can visit our website. It's the Epilepsy Association of Western and Central Pennsylvania. So our website is eawcp.org.

.org. Do you know what? I was just going to ask you, what if someone wants to go? That's how ahead of the game you are, Colleen. So Colleen, one more time, would you give them that website? Absolutely.

So it is Epilepsy Association of Western and Central PA. So that's E-A-W-C as in cat, P as in Paul, .org.

And this is the time of the year that we're thankful. So in addition to that, when you are making your personal contribution, make sure you go to the Epilepsy Association website and make a contribution. We're all thankful that we do not— me— have hundreds of seizures a day. As many children do, or parents who have lost a child to SUDEP. So please, there's a lot of things we're trying to do. Make a donation. And Peggy, the Mardi Gras is not just a party. There's a reason we're doing this. Correct. You want to talk about that?

Sure. So Mardi Gras is our— is not our largest fundraising event in terms of the number of people who attend, but it is our largest event in terms of the amount of money that we raise. And all of those funds stay in western and central Pennsylvania to fund the programs and services that we provide to help support people who have epilepsy and families that are raising children who have epilepsy. And so we essentially do 3 things as part of our mission that we feel are very important as part of the epilepsy community. One is to support people who are living with epilepsy. One is to increase awareness of epilepsy. And one is to educate the community about epilepsy. So the programs that we have that support people who have epilepsy really are range and a broad spectrum. They're kind of like epilepsy. Epilepsy is a spectrum disorder, and so the things that we do to support people who have epilepsy are pretty varied as well. We have everything from a program that provides monitors to help parents or loved ones keep track of whether or not somebody might be having a seizure while they're sleeping. Called the Emma Bursick Memorial— Emma's Gift Program that provides sleep and movement monitors. We have a seizure service dog program that is funded through the Michael Dupanczyk Fund. We have a summer camp program called Camp Frog for children who have epilepsy. We do a ton of education and educational workshops through webinars. We have an all-day conference coming up on November 12th that we're doing. We do workshops online through webinars. We do a lot of things with support groups online. We do tons of education in the school and with school nurses. And with teachers and school personnel. We can either do that via Zoom or we can do that in person. The Epilepsy Alliance of America also has a program that's available for school personnel as well. So everything that we do sort of fits into either supporting a person with epilepsy increasing awareness about epilepsy or educating the community about epilepsy. So if people are interested in all of those various programs, again, they can visit our website. It's www.eawcp.org. We also have a high school scholarship program that is pretty phenomenal. Every year we do about $12,000 in high school scholarships for folks. So, I always like to say to folks, one of the first calls that folks should make or can make when they get a diagnosis of epilepsy is to us because it can be very overwhelming to get a diagnosis of epilepsy. And then we just try to do whatever it is that would be most helpful for an individual or their family. That can be very different for every person or every family. And whatever that might be, we try our very best to either provide that help or to find somebody else who can provide that help. So, it might be just giving information to the family about what the diagnosis process might be like. It might be providing emergency medication assistance because you're in this kind of insurance black hole that we just talked about with something like the CHIP program and you suddenly find out that you have to go through this re-eligibility, reauthorization process with something like CHIP or medical assistance kind of thing. So, we're a good resource for families when they find they're in crisis. If for some reason an adult feels like they've been discriminated against at work and they don't know what to do or their child is having problems at school and they're having a hard time communicating with teachers. So it's a little bit difficult to say exactly what we do because exactly what we do, we hope, is whatever a person who is having problems with their seizures needs at any particular given time.

Wow, so much, but so much goodness helping people. So, uh, when you think of— and Colleen, let's start with you, Colleen— when you think of memorable events, something very successful, what one event has stayed in your mind?

Um, so I love each of the events that I do for very different reasons, and I think that if, if you saw me the night before any of the events, you would think that I'm a little bit on the crazy side. But I think that my favorite special event that we host is usually our run/walk events. Those events are primarily families who participate in those. And I'm very fortunate that I have got to be a part of these events for so many years because there's usually a point in the event, you know, the runners and walkers have gone out and come back and we're hosting our tailgate party and I get to just look over the crowd and see how many people came together to celebrate or honor the memory of their loved one with epilepsy. We know that epilepsy isn't One of those conditions that gets a lot of attention. With so many myths and misconceptions around it, it's not something that people always wear as a badge of honor, but to see all of the people that come together and, you know, usually throughout the day somebody will stop me and say, "Colleen, this is my child. They are now, you know, going to college, or, you know, now they have their own kids that are walking with them. So, you know, it makes me feel a little bit old, but it's also just such a great feeling that they want to share those celebrations with me. And those are, you know, usually the days that I get the most hugs and high fives, and I just get to celebrate with the families and know, you know, that what we're doing makes a difference. Yes, and it does.

I love that run/walk also, Colleen. It is awesome. When is it usually? In what month?

Usually our Pittsburgh run is held the end of June, and we host that event over at PNC Park here in Pittsburgh.

Okay, keep your eyes out at our website so you can attend. How about you, Peggy? What has stood out the most in your mind?

You know, it always changes for me, Joyce, but it almost always has something to do— like Colleen, it almost always has something to do with young people and transitioning. And the one that stood out for me recently is a weekend program that we did. You know, we haven't really been able to, because of COVID get completely back to our original summer camp model, but we did some weekends with our campers over the summer. And the thing that's really interesting about doing camp and was really interesting to me this year was that we had some high school kids leaving for camp. And so, the bus was kind of pulled up to the curb and the kids were meeting and getting on the bus. So, we had one high school girl, probably I am going to say 15, maybe 15. And she had been to camp probably many times growing up because she has been involved with the Association for many years. She and her mom came to the drop-off point and they were sort of like hugging one another and sort of saying to each other, "Thank goodness we are going to have a weekend away from each other." Hey, have a good time. High five. I am out of here. Get on the bus. I will see you late Sunday night. And then we had another family, mom and high school daughter, same age, dropping one another off, clinging to each other for dear life because they had never been separated for a weekend. And it was so difficult for them to kind of let go and let her— it was so hard for mom to let go and let her high school daughter sort of experience some independence. And, but that is, you know, so it is this camp program, sort of seemingly recreational kind of thing that we do for kids. But really, at the heart of it, it is really about having the kids having a chance to be independent and exercise some independence and have a chance in a safe environment with people that mom and dad know the kids will be safe with them and if they have a seizure, their seizure will be taken care of and they won't really have to worry about them and just letting everybody kind of in a very safe way let their kids go through those transitions the way they're supposed to go through those transitions when they wouldn't otherwise do it. You know, they just— mom and dad would just be too afraid to let their kids kind of grow and, you know, kind of cut those apron strings, so to speak. You know, so it was just really interesting to me to see the difference between the family and the child that we've been involved with for a long time and the child that we've just recently met. And who's just kind of getting started on that journey.

Yeah, that is something. Well, Peggy and Colleen, thank you for being with us today. We have come to the end of the show as we celebrate Epilepsy Awareness Month with our own Epilepsy Association of Western and Central PA. This is Joyce Bender, America's Voice. Where Disability Matters at voiceamerica.com. Talk to you all next week with Ted Kennedy Jr. And in the words of Mary Brooker, choose joy.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific 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.