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, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, welcome to the show today to everyone in the United States and around the world from China Finland. Oh, thank you so much, all of you listeners. And to my close friends from the U.S. State Department: Richard Roberts, Japan and South Korea; Gang Young in South Korea; Cheryl Harris in Tunisia; Veniamin in Kazakhstan; my wonderful friends from Austria, And Eva and so many more. Thank you. Thank you. And then, of course, Yoshiko. Hello, Yoshiko Dart. You know, I love you, Yoshiko. I bet Yoshiko right now, are you not saying, "Hi, Joyce"? I know you are. Love you, Yoshiko. And HiMark. How about this? They have sponsored the show for, yes, 6 years. 18 years. This show has been on for 18 years. It's amazing. And this is National Epilepsy Month. You know, that's really a big deal to me as I'm living with epilepsy. And here it now, I'm living with epilepsy and I am not ashamed. I'm living with epilepsy. And I have to tell you, I was so excited about having Allison and Liza on the show today because they both serve as members of the Epilepsy Alliance. And I love them to begin with. They are little rock stars on our show today. So Allison and Liza, welcome to the show.

Thank you for having us, Joyce.

So Allison, my girl Allison, We're going to start with you. You know, when I think of you, you know what I think of? That big smile you have. So, and I bet you're smiling right now. So, Alison, how about if we begin? Because as you heard me say, we have listeners throughout, of course, the United States, but also in other countries. How about if we start by you telling them your story? You know, like where you grew up and then what happened and how did you end up leading this life of advocacy for people living with epilepsy. How did this all happen?

Well, thank you for having us today. I mean, Eliza and I are so excited about being here and sharing all the wonderful updates from Epilepsy Alliance America. So we appreciate you. So I am just a New Orleans, Louisiana girl that I grew up in New Orleans and I graduated from Ole Miss which is the University of Mississippi, with a degree in finance. And I really didn't know what I wanted to do after that. I did know I did not want to do finance, though. And so, in 2012, a friend approached me and she said, "Hey, there's this great organization in Louisiana. They're looking for an executive director. I think you'd be a great fit." And, you know, I just, I was in a crossroads in my personal life at that time, and I thought, Well, that's something different. That's something fun. And I can manage a budget and I can throw a good party. I'm a New Orleans girl. So I said, let me just try. Let me put my application in. So long story short, I was hired and I say that's the day my life changed. There were so many wonderful things about the journey as executive director of Epilepsy Alliance Louisiana. And I thoroughly loved I loved helping people, whether newly diagnosed or with workforce issues. It was just every day became more and more of a joy. And it was just, you know, it was the love of mine and it became a passion. And I decided that, you know, I've always been very outspoken and this was a great way that I could use my voice to help other people. And I really tuned into the policy aspect of the job And there was just so much about it that was just so great in connecting with families across Louisiana and the United States and meeting people like you all who also have this passion. And so now I've transitioned to a board member with Epilepsy Alliance Louisiana, and I continue to help elevate the policy aspect of the organization. It's a labor of love. Like, I can't imagine ever not being involved. So I hope they'll have me forever.

Well, I know we'll have you forever because we've got to have that fun person. We've got to have you, of course. And I know, Allison, I know the passion. You know what? Did you ever meet someone, you liked them as soon as you met them? That's how it was with you. I really like you. And you know, you have done so much for the community. So of course, That's a big deal to me, just as it is with Liza, another great person. Liza, let's hear your story, Liza.

Sure, Joyce. I may not be as fun as Allison, but I have my own story. I just want to start by saying that, you know, Joyce, you really are one of my heroes, and I'm so excited to be here with you today. So I'll tell you a little bit about me. I grew up in New Jersey my whole life. My mother was a nonprofit disability professional working in the area of prevention of developmental disabilities. So I grew up knowing about neurological conditions. And my mom was the person who got legislation passed here in New Jersey to have signs in every bathroom in every business that warned women that were pregnant that drinking while pregnant could result in fetal alcohol syndrome. So she was a real role model for me. And when I graduated from college, I started my first job. I worked for The Arc around estate planning for people with disabilities. Then I worked for the Brain Injury Association, and then I came to Epilepsy Services Epilepsy Services of New Jersey. And it was a time when not much had changed in epilepsy for decades, for a really long time. And then in the early '90s, things began to change. New treatments and devices came onto the market and a lot of wonderful things began to happen for people with epilepsy. So I came in at a very exciting time. And I'm— I don't know whether I'm pleased or a little embarrassed to tell you, I am actually in my 30th year here at Epilepsy Services of New Jersey.

Well, absolutely, you do not need to be ashamed. We're all lucky to have you. And by the way, I read about your mother, and she— wow, talk about being an advocate. She is, uh, and I can't wait to visit in New Jersey. So it's so great to have you on the show, uh, Liza. So Allison, you and Liza are both founding members of the Epilepsy Alliance— is it of America?

Yes, Epilepsy Alliance America.

Epilepsy Alliance America. And of course, I'm the chair of the board of the Epilepsy Association of Western and Central PA. Peggy could not be with us today, but I know how involved we are and how proud I am that we are part of the Alliance. But once again, Allison, why don't you explain, you know, what is the Alliance? Because someone did call me one day and they said, "Well, I don't understand the difference between the Epilepsy Alliance and the Epilepsy Foundation of America." Would you mind explaining how we're structured differently?

Sure, yeah, I'd love to. And so I think it was back in 2018 that there were a group of individual organizations across the U.S. who really were like-minded in the fact that we wanted to be a hands-on approach in our local communities to helping people with epilepsy. And so we joined, we all joined together and formed Epilepsy Alliance America, took that big leap of faith trusting in each other that we would all uphold the same mission. And today it's going strong. So I think the important thing to know about Epilepsy Alliance America is that we all have the same mission, like I said, to be hands-on help in our local communities. But we believe that each individual organization should have full autonomy for programs and services that work for the people in their community. Everybody's different. Access to healthcare looks much different in Louisiana than it does in New York or Florida. And so, and even events and social engagements, I don't think Liza would want to do a crawfish boil in New Jersey. And so, those things we wanted to make sure that everybody stayed true to their community and they knew what resources they needed to provide the best access to care. And so we get together, we share successes and challenges and best practices, and we want to elevate the voice for the people of epilepsy from within the communities.

Which I believe is absolutely so important. And I'm going to be doing this throughout the show, but Allison, how does someone make a donation to Epilepsy Alliance America?

All you have to do is go to the website, which is epilepsyallianceamerica.org, and there's a beautiful donate button, as the web people call it, right below the fold, and they can make a donation, which is greatly appreciated.

Well, now, just so everyone knows, you all know I live with epilepsy. You know, I am so honored to be with the State Department to speak around the world. And actually, in South Korea, I went to one of the hospitals with— they don't have epileptologists, but they have neurologists that do a lot in that area. And Wow, it was so amazing. And I remember thinking, you know what, we need to do a lot more in the United States in the area of advocacy. Because that's what it was all about. I gave speeches about stigma and how stigma is the greatest barrier for people with epilepsy. So now this Epilepsy Alliance America is Feet on the ground. They have programs, they're going helping people, working to break down what I just talked about, stigma, forming advocates. So, you know, even if you write a note right now over the holiday season, when you're thinking of making a contribution, I don't care how much it is, donate to the Epilepsy Alliance America. One more time, let's hear that website one more time.

EpilepsyAllianceAmerica.org.

EpilepsyAllianceAmerica.org. And you know I'll remind you toward the end of the year when you're making your donations because epilepsy is just who I am. Epilepsy, one seizure, One night would change the rest of my life. Who knew, or who thought that would happen? So, um, I, I wanted to ask you, uh, both of you— well, we'll start with you, Liza. I want to talk about where you are right now, uh, just as I like when Allison was saying that, you know, about each affiliate being autonomous, and of course there's good reasons for that. So how about if you tell us about the Epilepsy Services of New Jersey, and then could you talk about how being a member of the Alliance even enhanced your work?

Sure, absolutely. So Epilepsy Services of New Jersey is an epilepsy organization that serves the entire state of New Jersey. We've been serving people with epilepsy for more than 50 years.

Wow.

And what I love about them— yeah, right? What I love about the model of the Epilepsy Alliance America and its focus on being stronger together is that it's a national organization that has local roots, right? Allison was talking about how there are some things that we all do and there are some things that we do that are specific to our region, territory, or state. And it gives gives us the ability to focus on providing direct support to people with epilepsy and the people who care for them. All of the members provide similar services like educational programs in schools, information referral, legislative and special education advocacy, medication assistance, and camp programs. And being a member of the Alliance gives us the ability to benefit from the national reach and scope and still best meet the needs of the people with epilepsy and their families right here in New Jersey.

So that has really helped you being part of this Alliance?

It has because I'm able to connect and share best practices and information and learn from others across the nation to best help people with epilepsy.

Makes it easier. That's what I like. Yeah, that's what I like. I think that that is a major benefit. I also want you to talk about one other thing, Liza, the Epilepsy Task Force and how were you instrumental in the creation of that task force?

Sure, great question. So we worked really hard here in New Jersey as epilepsy services of New Jersey to create legislation here in New Jersey, which resulted in an epilepsy task force. That happened in 2011, and the governor signed that legislation and appointed a task force that was established to develop recommendations to educate the public and healthcare professionals about epilepsy and treatments, as well as address psychosocial issues, depression, discrimination, and stigma. So the task force held public forums to get input from the community. And in 2014, they submitted a report to the governor that included recommendations such as first responder training, increased education for public— for the public and for professionals, increased medication access and protections, and educating medical examiners on SUDEP, sudden unexplained death and epilepsy. Policy, were some of the recommendations that they made. Really key here in New Jersey and really engaging the Department of Health.

Wow, that is amazing. How long did that take to get that going, Liza?

Right, so it was supposed to be held between 2011 and 2013, and they had more work to do, so they extended it to 2014. And a number of— some of the things that were recommended were established right away and others took a little bit of time. But there's been a lot of improvement here in New Jersey since the creation of the task force and the execution of the report that was generated from the input they got from the epilepsy community throughout the state.

And what positive results have you seen from this?

Well, I think a couple of things. One of the things I didn't talk about was the driving laws in New Jersey, which were very old and antiquated. And as a result of one of these recommendations, the driving restrictions here in New Jersey changed. We were one of a handful of states that required people to be seizure-free for a year, which was no longer medically necessary or medically considered a best practice. Now here in New Jersey, if you have a seizure, you have a 6-month waiting period, which is much more in line with what the medical community recommends and is much better for people with epilepsy in terms of their ability to work and live in the state of New Jersey.

Yeah. How many states do you think, just a guess, how many states do you both think, either of you, still have the 1-year wait?

I think it's less than half a dozen.

Oh, that's good because that was so hard for people. You know, think about your job, employment.

You know, what are you going to do? I mean, there's so much freedom in just being able to get in the car and go to Walgreens to pick up your prescriptions or, you know, get any— anything that you need for your household. And so, I mean, I just can't imagine people waiting a year before they'll be able to drive again. So hopefully other states can, you know, take note of what Liza's been able to do in New Jersey and copy it.

Yes, Liza, kudos to you for doing that. I mean, that really is awesome what you did and helping so many people. I know that, you know, when I was talking about stigma, stigma before. When I went to South Korea, I told them, "I mean it. I want a meeting with people with epilepsy." So I go into this meeting at the embassy, but there were only maybe 10 people there. And guess what? They were all nurses and neurologists with, I think, 2 people with epilepsy. So when I went in, the doctor says to me, "Whatever you do, don't say that word epilepsy." 'epilepsy.' I said, 'What do you mean?' 'Oh, no one says that. That's really terrible.' I said, 'Well, what do they say?' 'Cerebral electric disorder.' I said, 'Now you gotta be kidding me that you think that sounds better.' Yeah, that reminds me of, I don't know, a Frankenstein movie or something. Why would I not say, uh, epilepsy? 'Oh no, don't say it.' So of course You two know me. I went up and I said, "Hi, I'm Joyce Bender and I'm living with epilepsy and I'm not ashamed." And at the end of this, this young woman ran up and she threw her arms around me. She said, "Don't leave, don't leave, don't leave." I went back at the invitation of these doctors. Whoever thought they would become the advocates, but they did. And had me speak at a government proceeding, I saw her. And she ran up to me and she threw her arms around me and said, "I have a job." Oh, it was worth like a million dollars. But you know what? That was, yeah, that was all about stigma. That's what it was about, not being an advocate for herself. Now, when you add on top of that, transportation, you know, lack of transportation. The whole thing I'm talking about is employment. Employment is what gives us dignity. Employment is what gives us freedom. And when you can't drive, we go from stigma to add no transportation on top of that. Even as you said, Allison, even just going to get your medication, You know, I mean, it's, it's— I'm glad you got that done, Liza, uh, in your state. That's, that's wonderful. Allison, what I wanted to talk about for a few minutes is the COVID-19 pandemic. You know, I have been following this, and, you know, as you know, it greatly impacted the African American and disabled community as far as hospitalizations and deaths. But I wanted to ask you, how did you see that impacting people living with epilepsy?

So it's just, you know, it's crazy to think that we're coming up on 2 years since, you know, the word pandemic or COVID-19 entered everyday conversations. But at first, when the world shut down, as I say, in March 2020 for us in the United States, I was just so worried about the isolation and the mental health toll it would take on people that we serve at Epilepsy Alliance Louisiana. That was a major concern that we had as board members discussing what we can do to ensure people don't feel alone or scared because there's so much information that we were getting every day and it was changing as things were developing. And it was just a— when you look back on it, it was just a very unique and like unprecedented time that anybody had really lived through. And so we wanted, and we know people counted on the support groups that we provide. Support groups are a big part of Epilepsy Alliance America. We all want to host support groups in person so people can get together and share their experience with each other. And so there was a lot of information we had to make sure that our consumers understood about COVID and the comorbidities and ways it would impact with health inequities that we have, especially in Louisiana, rural Louisiana. And so that was a big push as we had to really step up and communicate better with our consumers. But when things started, when everybody got a little bit more used to being online, it was kind of amazing how I saw more people engaging. I think because everybody had to turn the Zoom or children had to log on at home instead of get on a school bus and go to school, everybody became a lot more comfortable with technology. And because of that, I saw people who had typically struggled at home with epilepsy really open up because other people had to be online and had to engage with them in that way. And so it really kind of like, I say it was like the fast shuttle bus to the future as far as being able to understand a community that sometimes has trouble driving or, you know, because they're relying on caregivers sometimes to bring them places. And being able to make activities more inclusive. And that was really an eye-opening, and, you know, it's like we all wanted to find a silver lining, and we're like, okay, this is it. You know, from now on, our events can be hybrid of in-person for those who want to participate, but also online for those people who are unable to attend an in-person conference or an in-person event. And then, and then fast forward to telehealth. And we saw patients who were getting access to care because telehealth became more popular and more comfortable, and more, more federally qualified health centers were offering the service. And so that became a benefit. And I recently read that a group of neurologists said that they're seeing patients 8 to 9 weeks sooner because of telehealth. So I think that's very important as we move forward, is to remember everything we've learned and implement it for people with epilepsy disabilities that can be held— everything can be more inclusive for that population. Like, let's not go back in that aspect. And I know epilepsy Epilepsy Alliance America has committed to really being a voice to advocate for telehealth to remain an option for people with epilepsy and other disabilities.

Oh, that is awesome. You know, I'm going to want to talk a little bit more about that after the break, but right now it's time for our news break with my favorite newscaster, CEO Perry Judd Radesik. CEO of Disability Rights of Pennsylvania, which I'm so proud to serve on that board. Uh, Perry, you have news for us today?

Joyce, I do, and it's a really exciting time. What we've been hearing about the Build Back Better legislation is that it may come to the floor of the United States House of Representatives next week. Now negotiations are still going on, but there is a framework for the legislation that we want to talk about today. The Build Back Better, as many of you listeners know, would help more people access health and mental health care coverage through expansion of the Affordable Care Act. The legislation would help more children attend preschool. It would enable more Americans to join and remain in the labor and it makes just historic investments in services and programs for people with disabilities. Now, this overall package is the most far-reaching investment in people with disabilities, children, and families in a generation. So let's go over some of the main points of the framework for the legislation that impact people with disabilities. There is an investment of $150 billion over 10 years in home and community-based services. Now, why do we say this is historic? Is because it would, one, strengthen existing programs, help eliminate waiting lists across the country through Medicaid, and it improves pay and working conditions for direct support care workers. We all know that direct support care workforce is in need of help from the federal government, and this investment helps with pay and working conditions. Now, Build Back Better will make Money Follows the Person permanent, and we know that's so important because that helps people with disabilities leave institutional settings and move into the community with support. Supports. Now, there is free universal preschool for all 3- and 4-year-olds with funding that would last for 6 years. There's an investment of 138,000 new housing vouchers to help people with disabilities access affordable and accessible housing. And we know once people secure that affordable and accessible housing, employment is probably right around the corner. There is a guarantee of 4 weeks of paid family and medical leave for all workers. People who have been following Build Back Better know that sometimes there had been paid leave in the law, sometimes it was taken out. Well, getting ready for the House floor, there are 4 weeks of paid family and medical leave, and that's so important for workers with disabilities who may need leave time to take care of themselves. So there's so much more. What I'm asking is that listeners, to want to view all of these sections of Build Back Better, visit disabilityrightspa.org, click on today's Advocacy Matters segment, and you can read the legislation and all the sections of Build Back Better for yourself. But what's more important with Advocacy Matters is that we need your help to push Build Back Better over the finish line next week. And we need to ensure that these social service infrastructure packages keep these important provisions for people with disabilities. The Arc of the United States has an easy way to contact your legislators.

It is so easy, you just fill out your name and address.

So if you wanna support Build Back Better, please act today. And go visit disabilityrightsPA.org, click on today's advocacy matters segment, and you'll find a link to the Arc of the United States, who has an easy way to contact your legislators to support Build Back Better. So please click on disabilityrightsPA.org, find advocacy matters for today, and help Build Back Better in the United States.

Oh, that is so important. That is so important. Please, please go to that website, please. DisabilityRightsPA.org. Please go, please read that. You've got to get behind this. Uh, that is such a big deal. And Perry, thank you so much. We'll look forward to seeing how this moves along.

Thanks, Joyce. We'll talk to you later.

Talk to you next week. Well, I have another surprise. I have a surprise mystery guest that you did not know I was going to have the honor of having as part of our newscast today. And we have today Rebecca Alexander, author, psychotherapist, disability advocate, group fitness instructor, instructor, and extreme athlete. Who I am not, and she is almost completely blind and deaf. And why she is on the show today is so we have the opportunity to raise awareness about American Masters Becoming Helen Keller coming up. And when we launch all this next year, we're also going to launch the Mary Brooker Mental Health initiative. But right now, I just want to focus on Rebecca. And Rebecca, welcome to the show. I would like you, if you don't mind, to— you are the narrator of this great documentary called American Masters: Becoming Helen Keller. Could you talk about that for a few minutes?

Sure.

Hi, Joyce Bender, thank you so much for having me on your show today.

It's such an honor.

So, yeah, so Becoming Helen Keller, you know, PBS is known for doing their American Masters programs on all different documentary biopics, and finally they've done it on Helen Keller. And part of the reason why this is so monumental for the disability community is twofold, one of which is we ensured that the broadcast, the programming, is completely accessible. So it's accessible for the deaf, it's accessible for the blind, and it's accessible for deafblind. And that's huge, especially for those of us who live with deafness, blindness, or deafblindness. But more importantly, the story of Helen Keller, when we think of Helen Keller, we think of sort of this very stereotypical moment of her at the water pump with Annie Sullivan, finally sort of bringing her world to life by giving her access to language by putting her hand under Water. If you ask people about Helen Keller, there's very little that they can actually tell you that they know about her. She was a trailblazer. She was such an incredible force. Most people don't know this about her, that she was one of the founding members of the ACLU, that she was a suffragist, that she was a huge proponent of not only disability disability rights, but rights for people of color, rights for people who were impoverished. She did so many incredible things in her career and throughout her life, and those are the things that we don't hear about. We also mostly don't know that Annie Sullivan herself was low vision, that she was visually impaired. So, there are so many nuances to her life, and she's so incredibly dynamic, and most Secondly, I think that this is what we're finally doing. We're moving the needle with disability, particularly as it relates to Helen Keller. We're no longer talking about the miracle worker. We're talking about her as an actual dynamic and multifaceted adult, just like all of us living with disabilities are.

That is so exciting. Now, Rebecca, how do our listeners follow this?

Documentary?

So, sure. So it is through the PBS, you know, there's a— they have a streaming service and, and you're able to access it, I believe, through the PBS website. And I'm hoping that— I know that we're going to be broadcasting it again soon, and to be quite honest, that I believe is something that they're going to be posting through the website through the PBS.org website. We have various streamings that are coming up that will be accessible to the public so that you don't— certainly, obviously, PBS, you don't have to pay for it, but that you will be able to access all types of accessible options for viewing this. So it is able to be streamed through the PBS website.

Well, you can keep me up to date on that so I can be giving everyone the news. Actually, I'm sorry we have such limited time today, but I would like to have you back next year after we launch our Mary Brooker Mental Health Initiative. As you know, Rebecca, there's so much stigma about mental health issues, and we would like your perspective. So I will look forward to having you on the show as our guest next year for the full show.

Awesome.

All right, thank you. Thank you. Thank you, telling us about this. Wow, this is so exciting. You know, I love hearing about, uh, I love hearing about Helen Keller. I do. I think she was just as was stated such a dynamic civil rights leader, but a lot of people don't know that. Well, Allison, Joyce Bender: When you were talking about the pandemic, I just wanted to say, you know, the ability to work from home was such a big thing for people with disabilities, but especially for people living with epilepsy because of what we just talked about, transportation. So I am happy to say that I have different corporations which are going to continue the work from home, but wow, Wow, what a change that one thing made. Don't you agree with me?

Oh, I totally agree. And because not only did it give people the ability to stay home and, you know, prove that it can be done, but more employers had to take a very serious look at it and decide moving forward, this is more of the future, being able to— for people to work from home. And so it does, it opens up a lot of opportunity. You know, I'm very, very, very sad that it had to come to a pandemic for us to realize these crucial things for people to be able to have a good quality of life. But people being more comfortable with technology and people having to implement these systems to where people had to stay and remain connected, it really did, it really was the silver lining for the epilepsy community through the pandemic.

Yeah, as you said, too bad it took that. Absolutely. That was one thing that was so great. So Allison and Liza, I'll start with you, Liza, if you could tell us about your work in advocacy and also your your belief in self-advocacy for people living with epilepsy. I mean, you heard my story about what happened when I was in South Korea. So Liza, let's hear from you first.

Sure. I'll touch really briefly on what's happening at the national level and then turn that to Allison, and I'll talk about what we're doing here in New Jersey. So at the national level, we're We've created a national professional advisory committee and they have clearly articulated to us their desire and need for us as a national organization to focus on improving access to care for people with epilepsy. So that is something we are really focused on at the national level. And then at the state level here in New Jersey, my example about self-advocacy is a law that we passed here in New Jersey last year. Called Paul's Law. So there was a young boy, 13 years old at the time, here in New Jersey who had been diagnosed with epilepsy and wanted to make a difference, wanted to raise awareness, wanted to feel safe while he was at school. And so we were lucky enough to partner with him and his mom to pass legislation here in New Jersey. His organization is called Paul's Purple Warriors. And so again, we partnered with them to pass legislation, and I am I'm thrilled to tell you that it passed requiring that all school personnel in New Jersey be trained in seizure recognition and first aid. Wow! Right? And we as Epilepsy Services of New Jersey in this year alone, and the year is not over, we've trained over 40,000 school personnel already.

Wow.

So we're really focused on what we can do that's going to better educate the community and help people with epilepsy get the care and treatment that they need. And we're continuing to work with Paul on more legislation to get seizure recognition and first aid guidelines posted in businesses here in New Jersey so that if someone has a seizure in a business or a workplace, that people— it'll be right there on the wall just like CPR and other first aid, that people will know what to do when someone has a seizure. So important, could save a life.

Oh, oh, yes, absolutely, it could save a life because we know the lives that have been lost because of lack of knowledge. And Allison, I could tell from reading your bio and information that you are all about self-advocacy. So tell us your views about self-advocacy.

I am, and I think because it's like when I look at self-advocacy, it's so empowering, but it's also a journey because nobody is like born ready to be an advocate for something until they've had that experience. And so I remember as executive director of Epilepsy Alliance Louisiana, it was a beautiful thing to watch somebody develop into an advocate because at the time when they were diagnosed, and you know, it's just, it's devastating and you don't know what to do and you don't know where to turn and there's no timeline for us to be able to provide anybody, but once you start reaching out and you start talking to other people and you find the right physicians and you find the right therapeutics that are working, and not everybody's so lucky either. There are There are people that struggle with seizures every single day because they can't find the right therapies to help them, but something clicks and then that person decides, like, "I have a story. I am strong." Like you said, "I have epilepsy," and they become an advocate and they're ready to talk about it, and that helps other people. There's strength in numbers, and people want to talk to other people who have experienced experiencing. And whether it's a caregiver or a person living with epilepsy, that is just such a strong connection that we can help people make with other families in the community. Because we know the tools that someone should be able to use and we know the clinics that they should go to and therapies to recommend and devices that would help, but we cannot <LYRICS>—talk about the experience until—</LYRICS> for them. So for them to connect with other people who have the same experiences really helps somebody on their journey. And then they get to the point where they do want to help other people. And I just find that just so empowering. And like I said, it's just beautiful, you know. And like, that's when, that's when change starts to happen when people can start speaking on behalf of other people who aren't there yet. And it's great whether we see it in policy in the state or federal or, like I said, just a small conversation at a support group. It makes all the difference when you can start talking about the challenges and successes that you've had as a person living with epilepsy.

Yeah, that is so true. And I have to say it is so true at all ages. Young people, it is so important. If you can get started at a young age where people feel confident, because if one young person with epilepsy is not ashamed and talks to another person, it makes such a difference. And you know how people are bullied. So that self-advocacy is incredibly important. And do you emphasize that in some way at the Alliance?

Absolutely. We are looking— we have our physician advisory board and our programs. We are looking at ways to help elevate voices and people become self-advocates advocates and share their story and share their journey and connect with people throughout the— look, I mean, we're on your radio show and people all over the world are listening. And so, we need to make sure that everybody's connected and they find somebody that they can confide in and share their story. And you're right, and it stops the bullying when you are confident and you have you know you're not alone, the future looks a whole lot brighter.

Yes, it does. And I will tell you again, as on this show, as we are celebrating Epilepsy Awareness Month, which I just call Epilepsy Month in November, I am so thrilled to have had Allison Alison DiBattista and Lisa— Liza Gundell. Alison, actually, you work at another place now, right? Where do you work?

Yeah, so I work for a full-service communications and PR firm, and the name of it is Moore, and they're based in Florida, but I'm in the Louisiana office. We have offices in Denver, Colorado as well. I'm on the public affairs team, and so I fortunately get to work in a lot of healthcare spaces there. So I enjoy the work, and it's like I can focus on policy and advocacy all day long.

Well, they couldn't have a better person, but you can't leave that Epilepsy Alliance. And Liza, CEO of Epilepsy Disability Services of New Jersey. It was such a pleasure to have you with us today.

Thank you, Joyce Bender. We were both thrilled to be able to be with you today. Thank you for having us. Of course.

Two great leaders, disability rights leaders and advocates for people living with epilepsy. And here we go one more time. Allison, how does How can someone contribute to the Epilepsy Alliance?

EpilepsyAllianceAmerica.org, all spelled out, one word.

EpilepsyAllianceAmerica.org and go to the donate and make a contribution. And if you can't do it today, you can do it tomorrow, or if it's in your giving budget at the holiday, but don't forget about it. Well, it has been a pleasure having them. I'm sorry, go ahead.

Oh, I was just going to say we also take checks, so if you want to write a check, there's an address on the website you can mail a check to. So we are willing to accommodate any donation.

All right, they take everything and anything. Well, as we're ending the show, I end every show with a quote, and today it has to be Toni Coelho, who said, "I am proud to live with epilepsy, and I would never change it." This is Joyce Bender, America's Voice, where disability matters, at VoiceAmerica.com. Talk to you next week when—

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.