Mission/Research Advocacy of Epilepsy Alliance America

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

Hi everyone, happy Epilepsy Awareness Month. You all know that's special to me since I live with epilepsy. But also, Happy Thanksgiving! And do you know who I'm thankful for? All of you. I have the greatest listeners. You know, this was our 20th anniversary, and I got news for you. I wouldn't be on 20 years if I didn't have you listening. So I have the greatest listeners. I know you care about disability and disability rights. And just know this: I love all of you. I appreciate so watch, how you listen to the show, and you're telling everyone about it. Then I have to give a shout out to all of my listeners around the world, from China to Australia. Um, you know, we have 17 countries with listeners, and I've got to tell you how much that means to me. I'm so thankful for all of you because I know that what you're doing is you are Helping change a life. I know in Asia there's pervasive shame when you have a disability, especially epilepsy, because I have been to Japan and Kazakhstan and Indonesia, South Korea. And those of you that are working to make a difference means so much to me. Thank you so much. Hey, Richard Roberts in Brazil, I can't wait to see you in the spring. Richard is with the State Department. And Richard, Richard Roberts, I am so thankful for you. I'm so thankful to know you. And you're just, I just love you. And Carla, I can't wait to meet you. Gangyang Cho in South Korea, you know what? I mean, you mean so much to me. Wonderful person that you are in all of the countries. It just so happens I made two very, very close friends, but Cheryl, right here in the United States at the State Department, what an awesome person. So thank you all. I mean it. I'm thankful for all of you. And I'm thankful to Voice America and my executive producer, Tacey Trump, for staying with me all these years. And to Matthew and Aaron and Andrew, everyone that has supported me, I'm thankful for all of you. Special shout out to Yoshiko. Yoshiko, you know how thankful I am to know you. Yoshiko Dart, you are such a wonderful person and dear friend. You know how much I love you. And how about our sponsor, Highmark? Highmark is the lead sponsor of this radio show. And what a great company, just a great company. David Holmberg, the CEO, is just awesome, as all of the leaders at Highmark are. But as I already mentioned to you, this is National Epilepsy Awareness Month, and I am thrilled to have with me today Liza Alipoli and Sarah Korba. Liza is the Chief Operating Officer and Sarah is the marketing committee member. Do I have your names right?

It's Lisa.

I don't know why it says that. I was going to say, I could swear your name is Lisa. That's why I ask, is I know you, Lisa, and either you have a sister or something happened. Okay, Lisa Gallipoli and Sarah Korba. You are Sarah, I know that. And Lisa, it's nice to talk to you again. And they are both with the Epilepsy Alliance of America that I'm the chair of the board of the Epilepsy Association of Western and Central PA. And you know what? I love this Alliance. I do. I love it. And I'm excited to talk about it as we talk about National Epilepsy Awareness Month. So Lisa, let's start with you. Would you share with our listeners about your background, where you grew up, where you're located now, and maybe you can even show or talk about with our listeners what the Epilepsy Alliance does.

Absolutely. Well, thank you, Joyce Bender, for having us. As you mentioned, Epilepsy Alliance America is special to you. You're one of our founding board members, a leader in this arena for decades, and a leader with our local member organization in Pittsburgh, Epilepsy Association of Western Central PA. So thank you for having us. I'm calling in today from Milburn, New Jersey, which is just about a half an hour outside of New York City. I'm fortunate to have lived in the New York City area my entire life. And when I took this position as Chief Operating Officer for Epilepsy Epilepsy Alliance America. I was able to continue to work from home at a home office and serve all of our member organizations across the country from my hometown. So that's a real special thing that I'm able to do and appreciative of that. Epilepsy Alliance America was founded in 2018, and I know Sarah will dive a little bit more into how we started. But we're a consortium or a collaborative of epilepsy organizations across the country. 19 organizations strong at this point.

Wow.

Serving people with epilepsy and those who love them. Yep, 19.

Holy cow, you have really grown. Wow, that is awesome. Not surprised though. Not surprised at all. Well, before we go to Sarah, Lisa, why did you get involved in the epilepsy area?

Sure.

So I have been in the nonprofit space for my entire career. I have worked at different organizations, patient advocacy groups, for a lot of diseases over time. Diseases like heart disease, breast cancer, autism, and this was a really incredible incredible opportunity to take those learnings from other nonprofit leaders and to bring them to the epilepsy space, to an organization that was just newly founded when I arrived at Epilepsy Alliance America, and to use those learnings to create something new and a little bit radical in the epilepsy community space. And a way to support epilepsy organizations and in turn people with epilepsy across the country.

And you know what, folks? I'm going to tell— I'm going to get you the website right now. What is the website?

EpilepsyAllianceAmerica.org. All of those words spelled out. It's extremely long. But extremely easy to remember.

Yeah, epilepsyallianceamerica.org. Okay, so, you know, you— I live with epilepsy and I'm so blessed that the medication works, but if I didn't take it, I would be having seizures as I have, you know, over a decade ago. But, you know, sometimes I still have activity. And that means that I sometimes get this feeling almost like dry heaves. Not often, but I do. And of course, as you all know, what do I say? I'm living with epilepsy and I'm not ashamed I'm living with epilepsy and neither should you be. But you just heard them say 19 19 organizations connected. So before Sarah describes all that, as the show moves on, go to epilepsyalliance.org because you can make a donation. So with that, Sarah, how about you? What's your background and how did you get involved? And you can tell us what the Epilepsy Alliance of America does.

Sure. Thanks. I just want to echo Lisa's thanks for having us on your show. We are so grateful for this opportunity to talk about the Epilepsy Alliance. It has really been a labor of love for the founding members, and it's just so exciting, some of the things that we're able to do now. So my background is I work for one of the founding members, EPI. We're located in upstate New York. I've been with the organization for 18 years now and done a variety of roles: marketing, fundraising, epilepsy program management. And I joined the board in 2019 and have been a member of the marketing committee. And it's just been a real exciting time in the epilepsy space watching this organization go from an idea to a fully fledged robust network that we are today. You know, we started— it was conversations with a few execs of epilepsy organizations from across the country that had been friendly with each other for a long time. And what they found was that there was a real desire and passion to build something new in the epilepsy community. And from these initial conversations, the Epilepsy Alliance America was officially created in 2018, as Lisa had mentioned, with our 8 founding members. Our founding was in response for a need for a really grassroots collaboration. And as Lisa shared, we're up to 19 members. So that has shown that our messaging about being collaborative and always putting the people that we serve first has really resonated with epilepsy groups across the country.

Yes. And Lisa, how many did— I mean, Sarah, how many are there now? How many did you say? 18, is that right?

19 organizations, 19-member organizations.

Oh, 19-member organizations. And so new when you think about it. I remember when this all went down and what a great idea this whole thing was, and I was 100% supportive. At one time, I was the national chair of the Epilepsy Foundation. And what I love about this Epilepsy Alliance is focusing on programs and grassroots because at the end of the day, you know, I want to know how can you help me right now. I mean, everyone wants— all of us want to see research that leads to the cure for epilepsy, but until that day comes, we need help right now. And that's what I like about this Epilepsy Alliance. So, Lisa, what is your role? What do you do there?

Sure. I'm the Chief Operating Officer. I wear a lot of hats because I am currently the sole paid employee of Epilepsy Alliance America. So I started in 2021 and I really partner every day with our volunteer leaders, our board members, the staff at our member organizations, and our marketing partners at a company called Dean Houston in Covington, Kentucky, brought to us by one of our incredible board members, Dale Dean. And this is— these are my partners in doing everything that the organization needs done, whether it's fundraising, whether it's marketing and communications.

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Since 1985, Bender Consulting Services has served as a national leader in advancing employment of people with disabilities, including veterans with disabilities, with private sector companies and federal government agencies. Bender assists customers with achieving their diversity and workforce inclusion initiatives by tapping into a talent pool of individuals seeking professional positions, including those in the STEM fields. In addition, Bender Services include disability employment consulting, training, and technology accessibility through their high-test line of service. For more information, please visit www.benderconsult.com. Follow Voice America at facebook.com/voiceamerica for juicy updates from your favorite radio shows and podcasts.

You're listening to Disability Matters.

If you have a If you have a question or comment, call in toll-free at 1-866-472-5788. That's 1-866-472-5788. Now please welcome back the host of Disability Matters, here's Joyce Bender.

Hey everyone, sorry, don't know what happened, but there was— this only happened one other time in 20 years, but there was some surge, storm surge, and I lost you, but I'm back. You know what? Doesn't that fit? You know what I always say to people? When you have epilepsy, you have all these neurons firing off like storm firepower. So, I must have had too much firepower because it cut everyone off. So, anyway, Lisa and Sarah, are you back with me?

We are.

I am.

Sorry about that, guys. As I said, I am a firecracker, but I didn't think it was going to do this. But anyway, back to you. We were talking to Lou Serra. Is that right? Okay. So what I wanted to ask you— sorry we got cut off there— but what I wanted to ask you about, am I right that the Epilepsy Alliance puts a great emphasis on programs, grassroots, things such as, let's see, training nurses at schools or the police or families that need medication. Are those the type of things you do?

We do. We do programs and services both on the national level and then we are highly focused on supporting our member orgs. You know, we are only as strong as our network. And so one of our goals has been to grow because the more members we have, the more resource sharing we have and the more collaboration happens. And it's a wonderful experience to be a part of this organization where everybody is so generous with their time and their resources and all in the name of really helping people with epilepsy today. You know, as you said, of course We all want research, we want a cure, but people who have seizures and have epilepsy, they need support in their lives today, and that's what we're here for.

Well, that is so awesome. And I just want one more time, is it epilepsyallianceamerica.org?

It is.

Okay. So if you either want to make a donation or let's say someone is listening and they're saying, gee, I wonder how I get involved with this. I didn't know this organization was in existence. Should they get in touch with you, Lisa?

They can absolutely visit our website at epilepsyallianceamerica.org. They can make a donation. You can make a donation either to Epilepsy Alliance America and/or to one of our 19 member organizations across the country. And at our website, you can also find the contact information for each of our 19 member organizations so that you have the ability, if there is an organization local to you or specific to a type of epilepsy, to be able to get in touch with that organization directly. As well as you have access to all the tools and resources that Sarah was talking about regarding programs and services and really a hub of information cultivated with the approval of our National Professional Advisory Committee that's available available to people with epilepsy, those who love them, and to our member organizations to utilize.

Do you have a mission statement at the Alliance?

We do.

And what is it?

The mission of Epilepsy Alliance America is to support those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.

Wow, that is awesome. That is really awesome.

I mean, I just love everything about this.

I said from the beginning, I said, "You watch, this Epilepsy Alliance is going to become the organization so known for fighting the fight for people living with epilepsy because disability rights are civil rights." And epilepsy is a disability. So to me, I'm just thrilled with what you do. So Sarah, from a marketing perspective with your background, what plans do you have to single out the Alliance from other groups?

That's a great question, Joyce. And the marketing committee of EAA has— we've really worked a lot on this. Our goal is for Epilepsy Alliance America to— we've never wavered from those sort of those first initial conversations, right? To be this national network that is dedicated to supporting services for people with epilepsy in local communities. And so our marketing committee has— we've defined sort of 3 goals for us that really guide our work to make sure that we stay true to this philosophy and idea that brought EAA into existence. And one is to generate brand awareness of EAA because the stronger the EAA is, the more support we can provide to our members, and that is one of our number one goals. Increasing membership has been super important to us for this very same reason. EAA is only as strong as our members. And then our third goal is really to position Epilepsy Alliance America as a thought leader and an innovator within in the epilepsy space. And we take a two-pronged approach to this. We have member organizations that are doing incredible work in their local communities and across the country. We have members now that are national partners, such as LDS Foundation and Josh Provides. And so we take some of the programs and service they do and really amplify their voices across our network. And then we also look for unmet needs that it's an appropriate place for a national organization to fulfill. And a great example of this is we manage the Lorna Meyers PNES Scholarship Fund, which is the only scholarship program for students with a diagnosis of psychogenic nonepileptic seizures, which are a big concern for people with epilepsy and PNES.

Yeah, you know, can you explain to everyone what that is?

Sure. So PNS, or psychogenic non-epileptic seizures, also sometimes now newly referred to as a functional neurological disorder, are seizures that are not epileptic or not electrical in the brain but still have many of the same components and safety concerns that seizures do.

Yeah, that is so— hard to get my head around. I remember when Dr. Brian Smith was telling me about this years and years ago, and it, you know, I— it's just hard to totally understand. Do you take medication? Do you take epilepsy medication or no if you have this?

You just have a PNES. PNES is not typically treated through medication. It's treated through therapy and in some other other ways, like through therapy and CBT and some other psychological ways. But many people can have both. And so that's sort of the tricky thing, right? So you would have to treat epileptic seizures with appropriate medication, but then also make sure that you're also treating the non-electrical seizures or the PNES events through therapy and other means.

Well, that brings up a topic, something I wanted to mention. You know, I did not know I had epilepsy. I had been having what I thought was these faints, and then they got really pronounced where I would get very ill, sick afterwards. But when I went to the doctor, family doctor, he misdiagnosed what was wrong and said it was just some female hormonal problem. Like, why the heck did I believe that? I was in my 20s and he's a doctor, so I assumed, oh, of course he would know. But I was wrong. And one night in 1985, when I went to see a movie, at the intermission I had a seizure and hit the floor so hard I fractured my skull, had a brain hemorrhage, broke the bones in my right inner ear, which is why I have a 70% hearing loss on the right side and had life-saving brain surgery. And it wasn't until then that in comes the doctor in intensive care and says, oh, you have epilepsy. You have to start taking— way back then it was Dilantin. You have to take medication. And why I'm bringing that up is not everyone who has a seizure has a convulsion. I mean, there are so many types of seizures that you think of the tonic-clonic, known to the layman as grand mal seizure, but I never had that. And by the way, if you're nervous or suspect something may be going on, don't go to the family doctor, go to a neurologist. That's where to go first. But Am I right, Sarah and Lisa, there are so many types of seizures that sometimes this gets misdiagnosed?

Oh, you're absolutely correct. You know, so I can speak from both on a local level because I work in a local organization, but also at the national level. Educating people on seizure recognition and then seizure first aid is incredibly important work. And our members do a lot of really great on-the-ground work in schools, in daycares, and employers to teach people that yes, tonic-clonic seizures, you know, are seizures and they're serious and this is how you respond to them. But there are so many other different manifestations of seizures that it's really important to also know that those could be potential seizures. And we, you know, we get heartbreaking stories all the time, right, of of people who have been misdiagnosed for years, you know, absence seizures, or, you know, where they just have like a little fluttering of eyes, and maybe they like, they go in and out, like they're just not there for a couple seconds, right? So it's not super noticeable, but they lose, especially in schools, you lose information over time, and outwardly it kind of looks like they're not paying attention, or maybe it's ADHD. That happens a lot, which is why your suggestion to go to— if you think something is happening and you're not getting the right answers, going to a neurologist is absolutely the right way to go.

And there are neurologists who are epileptologists who specialize in epilepsy, and that is like, you know, once you find out what's going on, that is the optimal way to go. I would start with a neurologist if you're not getting the information you need. Look at me, it's a miracle I'm alive. You know what I mean? So you've got to really, really, really be careful there. And this education, do all the affiliate— I'm sorry, all the organizations, do you do this pretty much across all of the organizations? Do you do— you do education, right?

We do. We do. And then we also offer an online— through the EAA website, we offer an online version that can be accessed in areas that don't maybe have a local epilepsy organization in their area to do this kind of training. And so we can offer it multiple different ways. So there's in-person options, there's virtual Zoom options, and then there's an on-demand online training through Epilepsy Alliance America. So that everybody who needs this information can get it.

You know, Lisa, you were— is this Lisa I'm talking to?

That was Sarah.

This is Sarah.

Okay. Lisa, a question I have for you. You have been there. I mean, you have what, 25 years of not-for-profit experience? And you felt that this was, which is fantastic by the way. Wow, you're really qualified. But what made you think Epilepsy Alliance was the right next step? Why did you think that?

Yeah, I'm either very qualified, Joyce, or very old. So it's one or the other.

We're going with qualified.

Okay. But I think that what was so exciting to me about the opportunity professionally was how new the organization was and that it was founded by established organizations that had— have been around for decades doing services and being part of different national alliances and organizations and that were looking for a new path and to help be the professional partner for those board members and those member organizations to kind of chart that new path and to build the infrastructure around that for the organization, for the programs, and all of that was just a really unique opportunity. In nonprofit, you don't always get— well, in any role, right? You don't really get the opportunity always to come in at the beginning stages. You come in 20, 30, 40, 50 years later and you're doing transformational changes, but you're not getting to create it from scratch. And it just seemed like a really unique opportunity to take my learnings and experiences and to bring that to this epilepsy space. Wow.

Aren't we all lucky to have you, our one employee with all this experience? It's great. To have you with us. So Lisa and Sarah, I have a question for each of you. I'm going to start with you, Lisa, since we were just speaking. Personally, what are your goals at the Epilepsy Alliance?

Yeah, I think for me it's about building on the foundations that we've created and building the capacity of our member organizations. We have member organizations like Epilepsy Association of Western and Central PA that have been around for 50 years, have established networks and relationships and an expansive and well-trained staff and programs that they're implementing. We have other member organizations that are 1 or 2 staff people. Covering an entire state and trying to serve the people with epilepsy in that market area. So for me, the ability to build capacity for each and every one of our member organizations is the personal goal that I have. Because by building that capacity and providing tools and resources for all of our members, it provides the ability for them the staff and the volunteers in those markets to get out and deliver those programs. I'm not delivering programs and serving people every day with epilepsy sitting in my home office in Milburn, New Jersey, but I am by creating tools and resources and then having the member organizations go out and use those tools and resources tenfold, a hundredfold in a day, a week, a month, a year. And that's really what excites me professionally and what my personal goal for the Alliance would be, would be building the capacity for our members.

Wow. Well, that is great. That's awesome. What about you, Sarah?

Yeah.

So, you know, building on what Lisa said, my personal goals for the Alliance is to continue our growth. I think I feel like we're really making an impact and that we've really been successful when I talk with a new member or a member who's on a smaller organization that has joined in the past 6 months or so. And they are like, "Wow, the resources and the knowledge and just being able to connect to other people that have who have done similar challenges, I mean, in different parts of the country, but you can sort of talk through programs and fundraising ideas. It's a very collaborative network. So growing that has been the marketing committee's charge, but it's also been such a personal joy to see it succeed. So it's been a wonderful journey.

Oh, that is awesome. Wonderful, wonderful. I just got to tell everyone, I am so excited to have Sarah and Lisa on. I am so excited because to me, this is thrilling. This Epilepsy Alliance America is thrilling. And that would be www.epilepsyallianceamerica.org. .org. As you can see, we have movers and shakers. If you have children, friends, whoever it is with questions about epilepsy, this is where you go. Epilepsy Alliance America. One more thing before we go to break. Peggy Bing Jolly is superstar material. Okay? She is a superstar, Peggy Beam Jelly, our CEO. And I know you feel the same way, right?

Oh my goodness.

We are so fortunate. She is our board chair this year and really an incredible leader. I'm sorry, Sarah, I didn't mean to cut you off. We were both so excited to talk about Peggy.

That's true. That's true. I feel the same way. As a board member, she is a wealth of knowledge and experience. And brings such a nice dynamic to the board chair role.

Well, when she told me she was going to be chair, I was ecstatic. And we have talked about you, Epilepsy Alliance America, at our board meetings because I am so proud that we got involved from the beginning. But we're so lucky to have Peggy. Oh my God. You have the best person you could have. My next goal, you know what my goal is? To have you all in Pittsburgh. That's my goal. And with that, we're going to get ready to go to break, and then we're going to be back with Gerald. This is Joyce Bender, America's Voice, where disability matters, at VoiceAmerica.com. Don't go away. We'll be right back.

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Since 1985, Bender Consulting Services has served as a national leader in advancing employment of people with disabilities including veterans with disabilities, with private sector companies and federal government agencies. Bender assists customers with achieving their diversity and workforce inclusion initiatives by tapping into a talent pool of individuals seeking professional positions, including those in the STEM fields. In addition, Bender services include disability employment consulting, training in technology accessibility through their High-Test line of service. For more information, please visit www.benderconsult.com.

Are you currently receiving SSDI or SSI and wanting to work? Did you know there is a free Social Security program called Ticket to Work to help you try work without risking your benefits? My Employment Options is an authorized SSA Employment Network specializing in work-at-home and local job placement in 47 states. Our clients receive a personal counselor to help to help find the best job fit and a staff-certified benefits counselor for help with Ticket to Work protections. Ready to try working? Apply for free job placement help at myemploymentoptions.com.

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You're listening to Disability Matters. If you have a question or comment, call in toll-free at 1-866-472-5788. That's 1-866-472-5788. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

Hey, welcome back. It is National Epilepsy Awareness Month, and if you've been listening, we've been talking to Lisa Gallipoli and Sarah Corbett from The Epilepsy Alliance America, and Lisa is the Chief Operating Officer. This is— even though they started 2018, this is so exciting for you to tell everyone, tell everyone about Epilepsy Alliance America. Go to their website, epilepsyallianceamerica.org. Look it up, share this. Podcast. As you know, it's on voiceamerica.com, benderconsult.com, Spotify, Apple, almost every social media venue. Share this with someone. It's on demand. They can go hear it. It'll be on demand listed forever. You're going to be in history forever. Lisa and Sarah. And with that, we're gonna go to break with what's happening at Bender. What's happening at Bender Leadership Academy, Scott Hammerstrom, leader, leader and king of the Bender Leadership Academy?

Well, thank you so much, Joyce, and thank you, Lisa. Sarah, what a wonderful show. And first off, I want to say Happy Thanksgiving to everybody. What a great week this is to be thankful. And I know for us, Joyce, we are very thankful because our Bender student leader classes, two of them, are back in person first time since COVID since 2020. And we had the opportunity to travel to our host sites at Highmark and Kellogg Carbon to have our students. And Joyce, what were your thoughts about Joyce Bender, going back in person finally.

Oh, I was ecstatic. You know how much I love this. For those of you that don't know, I started Bender Leadership Academy over 20 years ago as a not— on a volunteer basis. And guess what, Sarah and Lisa? It was 2018 when we became an actual 501. And what we do at Bender Leadership Academy is train high school students with disabilities about the world of work, fighting bullying because kids with disabilities are bullied more than any other group. Think about it. You're in 7th grade and you have a seizure in the hallway. I mean, kids with disabilities are brutally bullied. And we also have a mental health initiative, #NotAshamed. But to answer your question, Scott, oh, I love those students. I get so fired up. Here they are. They're just so excited to be at these classes. I mean, they are really excited and they're so wonderful and they want to learn and they, they want to get a job, which is what it's all about. What about you, Scott? What did you think?

Oh, absolutely. So great to see students in person finally, and I know the teachers are excited, but, you know, and thank you again to Highmark and Calgon Carbon. That, you know, we were doing a great job teaching the students. But we have had, we had a couple visitors in, leadership people from Hy-Mark and Calgon Carbon came in to talk to the students as well, which was awesome. They always have, our students always have great questions for them. And I know they were very excited to be in person. And, but we want to keep growing, Joyce Bender. And there is a lot more students out there who do not have that opportunity. To be in one of our classes, a work readiness class, or student leaders classes, because, you know, we do not have enough teachers, or, you know, it costs money to do these classes. So we need everyone's support. So if anybody out there is willing to support Bender Leadership Academy and our students with our programs, I ask you this. Go to our website, benderleadership.org, and click on that donate button. Any support will help us. If $5, $10, $15, $50, $1,000, whatever you are able to do, you know, we want to expand our programs throughout Western PA and all of Pennsylvania as we move forward and grow in 2024.

And if you would see these students, 9th grade to 12th grade, with disabilities of all types, including neurodiverse disabilities, and seeing how thrilled they are to have someone teach them and not lower the bar. They all have to give a speech at every class. They have to get up front. What does it take to be a good employee? What does it take to show initiative? Things of that nature. But also just supporting them with how they are bullied. So, there's two parts to the word Thanksgiving. And you know, don't we all say, "Thanks, what do you have to give thankful for? What are you thankful for?" We do this all the time.

But how about the giving part?

That is part of it, too. So, BenderLeadership.org, make a contribution today. And Scott, happy Thanksgiving to you, Jen, and your family.

Thank you so much, Joyce. Happy Thanksgiving to everybody listening out there, and I hope to be on soon.

All right. Well, how about that? Isn't that great, Lisa and Sarah, that we do that?

I love that it was formed the same year that us.

It's crazy.

I know.

I know, isn't that something? Yeah, we have a great board and it's just a wonderful thing. But hey, before we end the show today, I wondered, could you each give me an example of something you felt was a success? An example of something you thought since you've been with the Alliance was a success? And Lisa, we'll start with you.

Sure. Well, because it's top of my mind, because it's fresh and happening now, Epilepsy Alliance America has received our first grant from the CDC. Wow! And we're going to be convening, right? That's a big deal. Yes. And when you hear Sarah talk about one of our marketing objectives is being a thought leader in the epilepsy space, Receiving a CDC grant where we will be convening a learning collaborative for established epilepsy programs to get the word out about and to implement self-management programs, which we know are so critical for people with epilepsy and their family members. It's a great opportunity and a great achievement to have hit within our first 5 years of existence. So, I think that that's a great success and something that will be foundational and help not only the grantees that we'll be working with in this collaborative agreement with the CDC, but ultimately help healthcare providers across the United States and our member organizations in the promotion and the implementation of self-management programs. So, that's— If I had a win for today, that would be the one I would choose.

Oh, that's a big one. So you all know what she means, Center for Disease Control. You can't get a grant from them without great credibility. So that is a star for the Epilepsy Alliance America. Sarah, what about you?

So I think I would probably pick becoming the managing partner of the Seizure Action Plan Coalition. The Seizure Action Plan Coalition was formed by 3 amazing organizations in the epilepsy space: the Dravet Syndrome Foundation, the TSC Alliance, and the LGS Foundation. And they put together this coalition and this great website and this resource, and it pulls resources and information from across the entire spectrum of epilepsy services and organizations in the United States. And it really provides information and tools on why seizure action plans are so important. Empowering those around you to know what to do when you have a seizure is so incredibly important. And they approached us, I think a few years ago now, 2022, 2021? It all runs together after COVID. Just last year. Just last year. Thanks, Lisa. It felt very And they— and so very validating. Like, you guys are doing great work and we have this seizure action plan coalition and you guys could take it to the next level. And we— it just was an incredibly important opportunity and we're so grateful, so grateful for that. And we are really excited to see that grow and really become a resource and help people with epilepsy talk about their epilepsy and make plans and empower those around them.

Oh, well, you know what? That's so important. Well, congratulations on that also. And once again, we've been talking to Lisa Gallipoli and Sarah Korba from Epilepsy Alliance America, epilepsyallianceamerica.org. And get involved, get involved. Thank you both so much for being with us today. And I end every show with a quote, and today it is, when talking about epilepsy, Danny Glover said, "It's that people are willing to embrace you if you share your story." And it is all about your story. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Happy Thanksgiving to everyone. And when you go out today, remember, 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 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.