Elizabeth Karan, Fred Lado, Amanda Mitchell: Campaign for A National Plan for Epilepsy

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Hi everyone, Joyce Bender on Disability Matters. Welcome to the show. Thank you, everyone in the United States and the Americas that are great supporters. You know, those of you that follow the show loyally, it is 22 years. 22 years I've been on the air. And last year I had my 1,000th episode. And it's you. You know, where would I be without listeners? I'll tell you, I wouldn't be on the air. So thank you so much for your dedication. And spread the news. You know, if you're a disability rights advocate, I'm all about quality of life. As you've heard me say before, disability rights are civil rights. So you need to spread the news everywhere about this show. And quality of life for people living with disabilities. Guess what? No one else has this show with this news break on what's going on, you know, in the country as relates to disability issues. So we don't have CNN, but we do have Mathis on the Mic that you'll be hearing in the next half hour. Now, around the world, oh my goodness, these 131 countries with listeners. I am today going to review with you the top 10. And after the United States, which of course is number 1, once again, Singapore. Singapore has been strong on this show with listeners and you still hold the number 2. Thank you, everyone in that country, and keep spreading the news far and wide. Brazil, China, Spain, India, Canada, Japan, Taiwan, the United Kingdom are the top 10 countries listening to the show. Can't thank you enough. And I could go on reading, reading, reading, but, you know, I want to make sure that my guests get to talk on the show. So special shout out to Yoshiko Dart. Yoshiko, you know I love you. And I give you this shout out every show for years now. Thank you for leading on as a disability rights leader. Highmark, greatest company in America, has been the sponsor, lead sponsor of this show for years. I mean, that CEO David Holmberg and President Karen Hanlon, what a great company they are. And as you know, I place people with disabilities in STEM area and healthcare across the country. And they are, since I started the company in 1995, the biggest Joyce Bender, the hiring manager from Bender Consulting. So thank you so much for everything you're doing. And this show is very important to me today because it's personal. As you all know, I'm a woman living with epilepsy. Actually, I had an accident in 1985, because my epilepsy, like so many other people, especially women, was misdiagnosed. And one night I went to the movie theater and had a seizure and hit the floor so hard I fractured my skull. Because I had an intracranial brain hemorrhage, life-saving brain surgery, and against all odds, I had this miraculous recovery. And here I am. That's how it started. And that's why we are here today, but as the chair of the board of the National Epilepsy Foundation. But today, okay, I am biased. Don't get upset, Amanda. Best affiliate here in Pittsburgh is the Epilepsy Association of Western and Central PA, and I am the chair. And to me, that's more important. That is more important. So I'm so— love it. Love them so much. So today we're going to talk about a very important issue, which is the National Plan for Epilepsy, known as NEPEC. And we have Elizabeth Caron, the principal of Artemis Policy Group. Dr. Fred, is it pronounced Lado?

Lado or Lado, either one.

Okay, see how nice he is. Okay, well, we're going to call you Dr. Lado, the Professor of Neurology and Director of the Epilepsy Division of Northwell Health Eastern and Central Regions. You have a big job, Dr. Lado. And Amanda Mitchell, executive director from my favorite, the Epilepsy Alliance, and she is in the great state of Louisiana. So all of you, welcome to the show. It's a pleasure to have you on today as we talk about this National Plan for Epilepsy. And I know we all want this legislative action to make a great change and benefit for us people living with epilepsy. And I wanted to just highlight the areas that the committee will talk about, how the committee started. But we've worked on research, diagnosis and treatment, data and surveillance, reducing healthcare disparities, and prevention of SUDEP and other epilepsy incidence and my big, big issue, public awareness, which of course includes employment. So I thought we could start by each of you introducing yourself because, you know, with listeners around the world, I'm always getting this, "Oh, that was great. Tell me more about this person." So Dr. Lato, we'll start with you if you could just introduce yourself and maybe how you got involved with epilepsy and what you're doing with epilepsy today.

Thank you, Joyce Bender, and thank you for this opportunity to reach such a global audience. It's really a privilege to be here. And honestly, representing the efforts of many, many people, you can't have them all on the show. So I really feel that I'm here to speak for the collective work of a large number of people. My own journey really started in medical school. I've always had an interest in the brain, and epilepsy grew out of that. But the more immediate reason that I'm here is that I've been very active in the epilepsy community over most of my career, and I've done that through the professional society at the American Epilepsy Society. I've also been very active in the National Association of Epilepsy Centers, and that really has brought me into contact not just with my own patients— I have a full-time practice and I take care of adults with epilepsy, that's really the only focus of my practice— but with the advocacy community as well. And that has really both broadened my own perspective, um, as well as just brought me an enormous number of really wonderful relationships and really shared so many different perspectives of how this condition impacts people.

Well, thank you, because it's wonderful to have a doctor, a neurologist or epileptologist, also an advocate. That is a great, great thing. So thank you. I appreciate everything you're doing. Izzy, you're our boss, so you direct us. You're the conductor.

I'll say that.

There we go.

Yeah, I keep the trains running on time. And just to echo what Fred said, I feel very honored to be on your radio show, Joyce, and to be participating with Fred and Amanda, such fierce advocates for the epilepsy community. So my name's Elizabeth. Folks call me Izzy. My background is that I'm an attorney. With a master's in public health, and for the last 10+ years I've been working in health law, policy, and advocacy. So I really describe my career as demystifying complex systems and issues and breaking them down into their component parts so that folks can feel empowered, be that as a coalition in my role here at MPAC, or, you know, an on-the-ground advocate who's trying to convince, you know, a decision maker about something important and explaining how that, how those big kind of technical Congress, the administration impacts everyday life. So that's a little bit of background on me.

And I think, didn't you have a background also on the Hill?

Yes.

What did you do there?

Yeah, so after I completed my law degree and my master's in public health, I was a Winston Health Policy Fellowship with the, I did the Winston Health Policy Fellowship with the Senate Finance Committee. So committees in Congress have jurisdiction over different parts of the US Code. The Finance Committee has a lot of our tax and spending. So all of the tax code, the revenue side, but importantly for my healthcare work, they also govern Medicare and Medicaid. So on my time with the committee, I worked with the healthcare team focusing mostly on Medicaid, but then also issues related to women's health. And I was there for about 15 months before I went into private practice for 7 years and then another 6 years here in my own consulting firm, the Artemis Policy Group.

Now, you are one of the owners of Artemis, correct?

Yes, I am. We're a women-owned boutique. We do both advocacy, government relations, primarily for— well, exclusively for nonprofit organizations. And in that work, it's usually patient communities or it is specialized healthcare providers like epilepsy centers or other clinics that are dealing with rare disease typically. So again, it's really, it's been pretty special. We've been operating now for about 6 years and I feel really grateful and privileged to be a part of this important work everyone is doing.

I love that woman-owned business. Congratulations to you. And my friend Amanda. Hi, Amanda Mitchell, Executive Director of the Epilepsy Alliance Louisiana, and truly an on-the-ground advocate. So welcome, Amanda.

Thank you, Joyce Bender. To echo both Fred and Izzy, it is wonderful to be here getting to talk to you and getting to talk about the National Plan because it is really, really important for people living with epilepsy. So as you said, my name's Amanda Mitchell and I am the executive director of Epilepsy Alliance Louisiana. But like everybody that seems to be in the epilepsy community, I wear a lot of hats. I'm also on the board of directors for Epilepsy Alliance America, and I'm also our program chair there as well. And I actually got involved with the national plan through the Epilepsy Leadership Council. I'm on the steering committee for the ELC, and the ELC is a wonderful coalition of over 60 nonprofits, professional societies, and federal agencies that are all working together to improve the lives of people with epilepsy. One of the things that I deeply and truly believe is that it takes the work of all of us from boots on the ground, which is what you said, the work that I do all the way up to federal policy. But to tell you more about that, that is the work that we do at Epilepsy Alliance Louisiana is that boots on the ground work. I feel it is vital for patients to have resources, to have people who can help them find the resources that they need or understand epilepsy better. As all of you on this call know, epilepsy is a spectrum, right? And that can be really overwhelming. For people and families when they first get a diagnosis. What does this mean for me? So, a big part of what we do is trying to break that down and help families to better understand epilepsy. And then, like I said, find the care that they need. Neurology is a huge part of that, but there's a whole care team that goes along for most people with epilepsy, and that can be really difficult to navigate when you find yourself here, um, just one day. And so that's what our team, um, in Louisiana is here to do.

Well, I so appreciate what you're doing because surely, like anyone, I'd love to see a cure. But since I know that is going to be way down the road, uh, the way things have been going, I mean, what about now? What about me now? You know, what about employment now? What about healthcare now? What about dealing with schools now? So I really think it's so important, the programs, you know, and what you're doing. So we have a big job, a very big job, and I'm honored to be part of the committee where I talk about public awareness. ANSTIGMA, but I did want to go back to the beginning because a lot of people, you know, they don't know where did this come from? Why are they doing this? So, you know, whoever would like to start, I think Dr. Leido, weren't you involved from the beginning?

I was. At least I was involved with part of it from the beginning. I think this has been, as we said, a broad effort. And as I think about that question, I think what has happened is that there has been a confluence of a number of different streams that merged at the same time at a certain moment and brought us to where we are. One of those, going back to 2020, is actually, for your global audience, that the International League Against Epilepsy started working on the Intersectorial Global Action Plan for Epilepsy, and that was actually adopted by the WHO in 2022. And that has been a spur to every country that is a member of the ILAE to go and develop a national plan for epilepsy. In, in the United States, that came in the form of Jaideep Kapoor, who's the ILAE representative, past president of the American Epilepsy Society, who began to really focus a lot of the attention on the professional side. Concurrently, I think coming out of ELC, coming out of the advocacy community, there has been a restlessness building over the last 5 years that families and patients and the people who take care of and love patients really wanted to see an acceleration. And some of this advocacy coalesced around a new organization, the Epilepsy Action Network, And, and 2 key figures there were Scott Copeland and Eileen Penn Miller, who really just brought this attention to the front. And I think on the AES side, the leadership there, and again, I want to recognize some people who really stepped up early, and Howard Goodkin, Bill Theodore, and Jack Parent currently. Have all been advocates for this process. I think it was a confluence of all of these things happening at the same time, a strong surge of advocacy coupled with this plan and this desire to have a national plan coming through the International League Against Epilepsy, and then translating that in the AES, among other organizations culminating in NPEC, where we've now got this committee, steering committee, that represents a broad swath of the epilepsy community with epilepsy professional groups like the American Epilepsy Society and the National Association of Epilepsy Centers, research groups like CURE, and then obviously patient advocacy and patient-facing groups. Amanda's there, you're there, we're each representing different constituencies. We have representatives from EAN and from Epilepsy Foundation, which reminds me, there was one other key player, which was Epilepsy Foundation. For a long time, Epilepsy Foundation has had an advocacy program with Congress and has been making presentations and meeting with congressional offices for, for years. And so But as this advocacy effort really developed, Epilepsy Foundation was kind of the backbone that we started to build some of that advocacy around.

Well, thank you so much. So all these ideas came together. And then, Izzy, what happened next? Like, how did this committee— how was it formed and how many people were on it?

Yeah. Yeah, so the National Plan for the Epilepsy Committee, their— our primary focus is to make sure that we are identifying needs and opportunities that improve the wellbeing of people with epilepsy and their caregivers. But we wanted to make sure that we were doing so across multiple dimensions of what that means. So in people's everyday life, but then also in prevention and diagnosis and treatments and cures. About 18 months ago, I would say, the American Epilepsy Society spearheaded a group of 9 organizations and asked them if they could appoint a representative to this committee who could try to ensure that they were speaking with the voice of the constituency that they represent. So Fred hit you know, the vast majority of the organizations that are currently serving on NPAC. That includes the Epilepsy Alliance of America, the Epilepsy Foundation, our medical provider societies such as the American Epilepsy Society and the National Association of Epilepsy Centers, as well as the International League Against Epilepsy North America, our research community including CURE Epilepsy, and then importantly, we have some coalitions that really pull all of these different sort of folks together, and that includes the Epilepsy Action Network and also the Rare Epilepsy Network, and then the organization that Amanda is representing on the committee, the Epilepsy Leadership Council. So with NPAC, there's really two mechanisms to try to get a national plan enacted for folks with epilepsy. And taking a step back, the reason a national plan is so important for for epilepsy community is really that it creates sort of a dedicated space, dedicated resources, dedicated ideas, dedicated people, and really puts the full force of the federal government and the community kind of driving towards that one sort of goal. How do we improve the lives of people with epilepsy? So for NPAC, we are supporting legislation, which I think we'll talk about more later in this hour, and that would direct the US government to create this national plan for epilepsy. The other component of NPAC's work is to try to distill these different voices into one document that outlines priorities for the community, and we're calling that the Epilepsy Community Consensus Priorities. That's really been the bulk of the work that I've been trying to drive home with NPAC over the last 18 months. Those consensus priorities are in a final version now. We're very excited about where we're at today.

That is awesome. AAS, were they the key players to provide funding or to really get this going? Dr. Leito?

It's really I think we've passed the hat, and AES has certainly contributed, and I think the community is very grateful for that support. NAC has contributed, and I don't want to leave anybody off the list. Epilepsy Foundation has also been a major supporter of this. I think that's the bulk of it, but it has been a community, a communal effort, and And so I think recognizing that that does take money and it does take effort, having the support of an excellent consulting group like Artemis requires resources.

And yes, and Artemis has done a great job. Amanda, how about you? How were you first— Epilepsy Alliance, how were you first contacted?

Well, I'd like to kind of start, Joyce. I think my journey to this started back one evening in July of 2017, 'cause that's when my son had his first seizure. So I was actually in my master's, I have a master's of public health, and I was trying to finish that up. And you know, you never plan on having a sick kid when you're trying to make all of these life plans, but I ended up with a really sick kid. And then I was really, really frustrated because as I started thinking back through the master's work that I had done and the work, the public health work that I was aware of in Louisiana as a whole, there was almost nothing for epilepsy here. It took me almost a year until I found Epilepsy Alliance Louisiana, and 100%, I started working there for my son because I figured I had missed something. Like, we just had bad luck. I just couldn't— find what I needed to find. And as I kept working and kept talking with other families, I got to see so much of our story played out again and again and again. And so I often say, while I started for Jack, I stayed for everyone else because you can just see the need. But I do love listening to Fred and Issy and so many other people who are involved in this and the work that was actually happening. At that time, but it just wasn't reaching families like mine. And so I stayed on and I kept advocating harder and harder and ended up, like I said, on the board of Epilepsy Alliance America and our executive director here, and then was offered the opportunity to be a part of the Epilepsy Leadership Council on their steering committee. And again, seeing the massive amounts of work that is being done across the country to support people with epilepsy. And that was really amazing for me and really, really special from how isolated we felt to then really getting to see the broad work that has been going on for such a long time. And then being absolutely honored to be a part of the impact committee and the work that's being done to bring everyone together so that we can create the national impact that is absolutely necessary.

Well, I always say, give me the mother of a child with a disability and luck out. Amanda, how old is your son today?

He just made 9.

He's 9. And he is, I assume, still having seizures the way you Joyce Bender.

So that's one of the things that we work really hard, or I work really hard still as an advocate. He hasn't had seizures for several years, but the seizures, the impact that they had will be with him forever. And one of the things that we see is that people don't see the day-to-day impact that epilepsy and seizures can have on people. And so that's a big part of what we try to explain, at least locally, and then again, you know, nationally in these groups, that it really does impact every day of your life.

And, you know, people with seizures, especially if they're ongoing and heavy a lot, often it does impact their cognitive skills. And so I don't know if you know Dr. Whiting, Dr. Lato. I don't know if you know him, but he's the head of the Neuroscience Institute here in Pittsburgh. Wonderful person. And he referred a friend's son to me to see if we could help him get a job. Well, normally, although we place people in STEM areas, healthcare executive-level positions, We also do work in like a distribution center or monitoring at a hospital if it pays well with good benefits and isn't like any type of everyone who works here has a disability. Actually, in this case with AHN, the only people that work there that say, "I have a disability," are the two people that we found employment for. So Eric has epilepsy. And as I said, it did impact him to a degree. So you would say a significant learning disability. But we got him a job there. He had a seizure at work. So Peggy, the CEO of the Epilepsy Association of Western and Central PA, ask Andrea Zonnefeld to go with me to speak there. So they wanted training. They wanted to know. And boy, it had a great impact, wonderful on them because they had a seizure at work. They want to know, what is this? You know, what do you do? But I want to tell you about Eric. Eric went on his interview and we tell all the candidates, call us. When the interview's over. Well, he didn't call. He didn't call, didn't call. So my manager, who you talked to, of human resources, Gerald, called him and said, what happened? Oh, well, I'm still here, you know, I'm still here doing some work. And he said, what? Yeah, well, you know, then we'll, we'll talk to them tomorrow, because Gerald didn't know what he meant. Next day, he goes on his second interview. He doesn't call. And when we finally get him, guess what he's doing? He's working. He's doing the job. And we said, no, no, you don't have an offer yet. You have to come back. He is there every day on time competing with everyone else. And so is the other person I placed with an intellectual disability. Just saying, just because you have epilepsy, There is a job for everyone. Just want to point that out. So we do have a big job before us. Amanda, you told us why you became involved and why it is important to you. And we've engaged with Izzy. So especially because you've worked on the Hill, tell us, what do we need to do to make this a reality? And I'm assuming we don't have like a program listing in the budget, right, for epilepsy as they do for Alzheimer's and other areas. We don't have a carved out area. Is that correct?

Well, so there's certainly work happening at the federal government level on epilepsy. I think what we're trying to accomplish here is really creating a more unified approach happening at sort of a centralized location. So those resources can be strategically utilized and also be utilized in a way that people with epilepsy want that reflects their priorities. So that's the goal behind the national plan is both to increase the resources and also improve the direction. So where we're sitting today, there are two ways that, you know, two things that folks can do to get involved more with this national plan work. First, you know, I'm going to say this as many times as I can get the microphone. You can go to epilepsynationalplan.org right now and the consensus priorities that Joyce and Fred and Amanda really put so much effort into getting drafted are right there on the website. And perhaps more importantly is an opportunity for you to take action and ask your member of Congress to co-sponsor the National Plan legislation. So I don't know, Joyce, do you want me to go into more details about that legislation now?

Go ahead.

All right. So This legislation has been introduced in both the House and the Senate. So just give me a second while I do a bill becomes a law. We have to get legislation introduced and then we have to get it passed by both chambers and signed by the president for it to become an act of Congress. And so what we're asking folks to do is have their members of Congress put their stamp of approval on that legislation. That's what co-sponsoring legislation means. Getting something passed is really multifaceted. We need the co-sponsors to go up, we need the committees of jurisdiction to consider the legislation, and then we need a vote on the floor by both chambers. Um, so it takes quite a bit of time and a ton of effort from community advocates like you and everybody else listening here. Um, and Unfortunately, it is subject to the context of what's happening across the world. But the most important thing you can do right now is go to that website, theepilepsynationalplan.org, and reach out to your member of Congress and ask them to co-sponsor this legislation. The tricky thing I want to invite folks to consider is that this is both a sprint today. There's a lot of urgency to try and make your voice heard with your members of Congress, that this will also be a marathon. So when you pass legislation, that's awesome, and it's really just the first step. So we want to make sure that we're building these bridges and we're creating momentum, not just for the next 8 months when this Congress will end at the end of December, but also for years to come. We want to create a movement. We want to bring everybody together to make to make sure that folks' voices are heard in this process.

And what are the key issues that would be resolved through this act?

So the act creates a committee that will pull together different stakeholders within the government to then designate sort of what the federal government is going to do more specifically related to epilepsy. You mentioned we've seen this work in the Alzheimer's space, and it's for that community meant in the long run more funding for research, more funding for improvements in clinical care, more public awareness campaigns. So that really will be the goal, is to get that body created and for them to get the work off the ground that it indicates.

Yeah, well, so important and I want to urge everyone to go look at that plan. What is that website again?

It's the epilepsynationalplan.org. Epilepsy national plan dot org.

Okay, now if you're listening to this and, oh yeah, my child has epilepsy, or I do, or friends do, or no matter what, I know this is important. Don't just say that. Go to that website, contact your congressman. Believe me, it makes a difference. It makes a difference. It's important you do that. You know, how do you feel about that, Amanda?

Um, yeah, I, I definitely agree. I've been fortunate to be able to have conversations with a lot of, um, our national or federal legislators about this and about the issues, and They really want to hear the personal impacts. That really helps them to understand what's going on day to day with their constituents. So as many people that can reach out and say, yeah, this impacts me too, or this impacts, you know, someone that I care about, then I think that will help us to continue that momentum that Izzy is mentioning, which is vital.

Yeah, I agree with you. I'm going to ask you this question, Amanda. Why do you think this hasn't happened already? Why does it seem like we, epilepsy, are always, you know, we're always in the back row? That is, if we're even in the row. So why do you think that is?

I can, from what I've seen locally, it's really hard for me to kind of speak nationally, but Locally, we've seen that most people, again, really just don't understand what this is like to live with day over day. The number of people who think you can have a seizure and pop up and it's not going to have any impact on you whatsoever, I haven't met very many people where that's their experience. And coming as a parent, right, we do can get a lot of empathy for children, but this definitely impacts adults too. So one of the ways that I like to put it into perspective is in Louisiana, if you have 2 seizures a year, average of 6 minutes of your life, right, every year, you will never drive again in Louisiana. We have very limited public transportation options. So just on that fact alone—

Go over that again. You're saying If you have one seizure in a year—

So if you have two, because technically we don't have legislation around this, but most people are required to wait 6 months after having a seizure to drive. So that means 2 seizures a year, right? If they happen within those 6 months, you will never drive again in Louisiana. And that really impacts people's ability to have a social life and have a family and have a job, right? And that's only 2 seizures a year. And there are plenty of people who have way more, right, than 2 seizures a year. And so that's what I think I've seen is that the community doesn't understand and we have to, you know, be really loud and strong with our message that this does impact people's lives and they do deserve support during their journey and that their journeys can look very, very differently. And I think we're getting there. I know we're getting there. I see it day over day.

And I do too. I want to say one thing to all my listeners. Not only do I want you to go and call your Congress man or woman, but I want you to share this show. You know, you can hear this on demand on Spotify, Apple, Amazon, obviously, you know, voiceamerica.com, YouTube, benderconsult.com. You need to go grab the show and share it. Share it. I'm sure if you're listening, you're thinking, oh, I wish so-and-so was hearing this show. You can share it. So make sure you do that. In the meantime, it is time for Mathis on the mic. Hello there, Jennifer Mathis. Hi. I'm good. We were talking about you earlier. I was telling them how we have this superstar that is our I tell everyone she's my Rachel Maddow, Jennifer Mathis. Mathis on the mic. So, uh, Jennifer, what news do you have for us today?

So I want to highlight, um, a couple of important court decisions that came out last week. I had forecast that I was going to talk about something else. I was going to talk about the Save America Act, which I think I will put off, um, until next week because these court decisions were so significant, I think. And they all happen within the span of a couple of days. And so I, I, this is not an action item, a to-do item of call your congressperson. This is just an awareness item. But I think these things were very important. I have talked on the news segments before about the challenges that were brought to what HUD is doing with its federal housing policy to implement the administration's executive order on homelessness. And that executive order really sets out a vision of addressing homelessness through increasing civil commitment, increasing institutionalization, Moving away from the practices that have been proven successful that we call Housing First, which is kind of housing people first and then trying to engage them in treatment, not kicking them out of housing if they aren't able to comply with treatment. There's decades of evidence that Housing First is what works. There's been bipartisan support for that over many years. Really first promoted by George Bush's housing czar, George Bush II. And so this was really sort of an about-face, and HUD had issued a funding notice, funding opportunity notice, in the Continuum of Care program, which is the largest federal housing assistance program that finances, supported housing for people with disabilities and others. And so it was a very, very significant shift, and it really, it came at the last minute after a prior Notice of Funding Opportunity had been issued and people were selected, and before the money went out, they rescinded that. Prior notice of funding opportunity and issued a new one that had completely different direction than ever before, pushing the money towards transitional housing and not permanent supported housing anymore, meaning that lots of folks who have been housed in permanent housing under these grants would lose their housing because it would be converted to transitional housing. And frankly, transitional housing was, you know, a much smaller part of the program in the past, and this was making most of the housing transitional rather than permanent. It did a number of other things. It excluded people with mental illness and substance use disabilities from the priorities what little permanent supported housing there was. It imposed many restrictions on the jurisdictions that the grant— that the bidders could be in. And so there were many, many new criteria that pointed in very different directions from the past and also criteria that did not allow Housing First to be used in these programs. And Housing First was the primary modality that was used in this program now for, for years. And so all of the providers that were using this money to house people, all the people that were being housed, would presumably lose that that funding and that housing. So this was a big deal. It was challenged by service providers. It was challenged by states and counties. And last week there were two very significant decisions. There was a decision in the trial court, and this was actually a judge who was appointed by the current president, and she She found that this Notice of Funding Opportunity violated the law, that it was arbitrary and capricious, and it was in some respects contrary to law, and she vacated the notice. And so what that means is the old Notice of Funding Opportunity, what people were operating under, is what stands right now. There was also a day later another decision in the same cases that was from an appeals court. It was from the First Circuit Court of Appeals, and that came in— it was an appeal that HUD made to a decision denying their request to dissolve the preliminary injunctions that the court had issued. So the court had issued a preliminary ruling saying, "I'm putting these on hold," and then they didn't appeal that directly, but they later asked for it— the preliminary injunctions to be dissolved. And so the court said no, and they appealed that, and so the appeals court said no, said, "You haven't presented any evidence, any new evidence, and so there's no reason for me to to grant this for us. It was 3 judges. And in that decision, the court said some very important things about Housing First and the evidence behind it and how it has been shown over many years to be successful. And the seeming arbitrary nature of the effort to jettison it after all of these years. And so I think that decision is going to be— both these decisions are going to be very important going forward. That housing houses lots of folks with disabilities and older adults. It houses lots of people who moved out of institutions and into the community under Olmsted agreements or voluntary Olmsted efforts. It houses lots of people, um, who are avoiding going into institutions because of the housing and services that they're getting in the community. So it— those decisions were just so important. And the same week, there was also a long-awaited decision from the 11th Circuit Court of Appeals. This was in a case that was brought by the Justice Department around kids with significant physical disabilities, medically complex kids, who were in nursing homes. Parents did not want them to be in nursing homes. The parents wanted them home, but they could not get the services that they needed, the nursing services to have their kids at home. Very important case. There was a big trial back in, I think, 2023, and the Justice Department won on behalf of those kids. It was great. Florida appealed that to the 11th Circuit, and it has been sitting and sitting and sitting for a very long time. And this decision just came out last week, again, affirming in large part the win of the Justice Department. It was a huge victory. Florida had made all of these arguments that the ADA is very individualized. Individualized, and you can't bring these kind of actions where you're looking at a whole service system. You have to bring it one person at a time, and that's the only way that you can do it. And we all know that when you're talking about service systems that operate in a way that impacts hundreds of thousands of people at a time, it doesn't make sense. You can't empty out the ocean one bucket at a time. You have to look at how the service is operating, and it's operating the same way for so many people with disabilities. And so this court said, yes, you can bring systemic cases. You can get remedies under the ADA that are about changing how a service system works. And that's important. The ADA is not something that you can use only one person at a time., and the ADA doesn't require you to wait for people to be institutionalized. If they're on the brink of being institutionalized, they don't have to go into the institution before they can bring a lawsuit to vindicate their rights. So I just wanted to highlight those because they were so important, and they all happened at the same time, in the same week, the same couple of days, and I thought it was significant enough to highlight those things. Again, not an action item, just awareness.

Well, you know what? Thank you so much because we need to be aware. All of our listeners need to be aware. Parents need to be aware. So thank you, Jennifer. I don't know how you choose one thing to talk about with so many things going on, but you do a great job and we will look forward to hearing from you next week.

Thank you.

Take care.

Bye-bye.

Bye. So smart. She is so smart. So, um, back to you, Dr. Lato. If once this happens, how would it impact you as far as assisting you in any way with research dollars? Or I mean, What would this do for you?

Joyce Bender, MD, PhD: Joyce, I'm a clinician, and I spend my time and make my living seeing patients and taking care of them. I think the things that I want to see, of course, are going to be better treatments, newer treatments. There's a whole generation of what are being called disease-modifying therapies where we don't just treat the symptoms, but we actually treat the cause of why a person has seizures. And for instance, we're enrolled in a clinical trial. It's a venture, it's a startup that has cultured neurons that are implanted into the areas of the brain that produce the neurotransmitter that turn off the seizures. That's a remarkable type of therapy. And it's much less side effect burden. You don't have to remember to take the pill. And then there's a whole slew of other disease-modifying therapies that are in the pipeline, gene editing therapies, things honestly that are beyond my understanding, but there are a lot of smart people working on them. And so I want to see a lot of these things come to our patients, and the sooner better. But I think— and Amanda had made this point very eloquently in our conversations in the NPEC group— that a lot of what needs to happen is stuff we already know how to do. We need to connect people to transportation systems so they can get to their appointments easily. We have to make sure they have insurance so that they can go get medical care, the stuff— access to medications. These are the day-to-day sort of, you know, bread-and-butter types of problems that I would love to have better solutions for. I can't tell you how much it breaks my heart that I've had patient who, who was on a new medicine, was getting it, doing very well, and then the coupon card that they had for 1 or 2 months' supply ran out, and I couldn't get them the medicine at a cost they could afford, and they had to go on medicines that did not work as well. That story had a happy ending. They wound up on a different new medicine that had a wonderful patient assistance program. They have it. They've been seizure-free. So as a clinician, I encounter these all the time where somebody, you know what to do, you know what works, but you can't access it. Because the system is not working to the patient's benefit all the time. And that's— so it's both of those things. It's the new therapies and it's the getting the stuff to work for patients all the time.

Yeah. So when do you think, Izzy, that we will make progress and get something going here? So I think— Get it to legislators is what I mean.

Yeah, you know, and I think that's what's so cool about NPAC's multi-function at the moment. So not only are we building momentum for this legislation, we have the consensus priorities right now today. And those priorities identify priorities for the federal government, but also for organizations. There are things in there that we can undertake as a community right now. So I think it's important to note that, you know, the National Plan legislation, we need to build momentum, we need to get more co-sponsors, and we need to do that right now. But we also need to make progress where we can, and I think that's really what the consensus priorities are going to play an important role in, is helping folks find their part of that puzzle and figuring out the problems that they can fix today for people with epilepsy and their caregivers and loved ones. So it's a yes and. Yes, we need this legislation and we need people to act today, and we need to keep working right now to try and make progress.

And you know what? We all need to work together. This is why I tell people, all silos down. This is a time we all need to work together to make this happen. And I'll tell you, I tell everyone, oh, when you have epilepsy, you have too many neurons firing off. So that fits me. I've got the firepower. And so do all of you listening. To the show that live with epilepsy. So since you've had that firepower, you've got to go to that website.

Izzy, website is epilepsynationalplan.org.

epilepsynationalplan.org. You've got to go there. Got to get in touch with your congressman, but you need to tell everyone about that. Isn't that what we want, Amanda? We want this out everywhere, right?

We do. And for both our legislators and also for people with epilepsy, because there's a lot of hope right now with this plan and the work that's being done. And I think everybody deserves to be a part of that too.

Well, thank you so much for being with me today on the show. Thank you, all of you listeners. Make sure you share this show and go to the website. Site. We end every show with a quote. So it has to be this. Tony Coelho said, "I live with epilepsy and I am not ashamed. I live with epilepsy." And guess what? Neither am I. So in the words of Mary Brooker, remember when you get up tomorrow, Tomorrow, choose joy. You will see the difference. Talk to you all next week.

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.