Episode #150 - Advocating for a National Plan for Epilepsy in Uncertain Times featuring Dr. Daniel Lowenstein
Advocating for a National Plan for Epilepsy in Uncertain Times
Episode Overview
This month on Seizing Life, Dr. Daniel Lowenstein discusses the current efforts to push Congress to adopt a National Plan for Epilepsy, explaining who is behind it, what it is, and what it could mean to the epilepsy community.
The numbers are clear and well-known in the epilepsy community: 1 in 26 people will develop epilepsy in their lifetime, 3.4 million Americans live with epilepsy, and one third of those diagnosed with epilepsy cannot control their seizures with current medications. But the impact of epilepsy goes far beyond those who are diagnosed with it. Epilepsy impacts the families and friends, the dreams and ambitions, the days, years, and lifetimes of those who live with it. Epilepsy affects more people than multiple sclerosis, muscular dystrophy, Parkinson’s disease, and ALS combined. Still, epilepsy receives less federal research money per patient than each of these disorders. Progress has been made in the past 20+ years, but more needs to be done to unlock the mysteries of epilepsy, discover new and better therapies, and improve the lives of those living with epilepsy.
Internationally recognized epileptologist Dr. Daniel Lowenstein joins us for an informative and important conversation around the current push for a National Plan for Epilepsy. Dr. Lowenstein outlines the current epilepsy landscape touching on current knowledge, treatments, research, funding mechanisms, and epilepsy organizations. Then he explains what a National Plan for Epilepsy is, who is advocating for it, and what it would mean to epilepsy researchers, clinicians, and those living with epilepsy. He addresses the need for a balanced approach that involves both research and improving the current care of those living with epilepsy. Most importantly, Dr. Lowenstein explains what you can do to become involved and why it’s vital that you do. In the course of the conversation, Dr. Lowenstein also touches on disparities in epilepsy care, the current challenges in biomedical research funding, and why the community must stay resolute in the face of these challenges. Finally, Dr. Lowenstein offers his perspective on recent advances and discoveries in epilepsy that give him hope for the future, including a CURE Epilepsy related discovery that Dr. Lowenstein calls “One of the most spectacular discoveries that I’ve seen in recent years.”
If you or a loved one are touched by epilepsy, this is an episode you don’t want to miss. We hope you will listen and then lend your voice to advocating for a National Plan for Epilepsy through the links below.
Epilepsies Action Network: https://www.epilepsiesactionnetwork.org/
Epilepsies Caucus: https://www.epilepsiescaucus.org/
G2G Consulting: A bi-partisan group of policy and funding experts who are assisting in advocacy efforts around the National Plan for Epilepsy, led by G2G Vice President Katie Collins. Contact Ms. Collins via email here: kcollins@G2Gconsulting.com
Episode Transcript
Kelly Cervantes:
Hi, I’m Kelly Cervantes, and this is Seizing Life, a monthly podcast produced by CURE Epilepsy. This week I’m happy to welcome Dr. Daniel Lowenstein to the podcast. Dr. Lowenstein is an internationally known epileptologist. He is the former executive vice chancellor and provost of the University of California at San Francisco. Dr. Lowenstein has also served as president of the American Epilepsy Society and is a former member of CURE Epilepsy’s Scientific Advisory Council.
He’s here today to discuss the effort to develop a national plan for epilepsy, explain what a national plan is, who is behind it, and what it would mean to clinicians, researchers, and those living with epilepsy. Dr. Lowenstein, thank you so much for joining us today. To start, I’d love for you to give a little bit about your background and how you got into epilepsy. You’re a bit of a legend in this community, so I’m just so thrilled that everyone is going to get to know you a little bit and what you’re currently working on.
Dr. Daniel Lowenstein:
Well, thanks so much, Kelly. It is such an honor to be invited to this discussion and to connect with a community that I love and care for so deeply. You asked about my background and career in epilepsy. To summarize a long life at this point, coming into epilepsy was a bit of a surprise. Growing up in New Jersey, I was mostly interested in becoming a wilderness guide actually and had no interest whatsoever in healthcare in any form. Ultimately, I found medicine while preparing for a mountaineering expedition in Central and South America.
That’s a long story, but I eventually discovered that I really, really wanted to become a member of the healthcare profession, and in particular a doctor. So I worked extremely hard to get into medical school. And through medical school, I learned that I was really drawn to the nature of the suffering that is associated with neurologic disease, and in addition, fascinated by the complexity of the human brain and the ways that it can cause disease. And so I eventually decided to become a neurologist.
And once neurology residency began, which was here in San Francisco at the University of California San Francisco, I got drawn into epilepsy. I can’t really give you a precise answer as to why I ultimately have decided to focus my whole professional career on epilepsy, but it might be connected to an experience I had when I was 12 or 13 years old. My mother is a social worker, and she was helping the patients at the New Jersey Neuro-Psychiatric Institute, which was one of these large mental health institutions that we used to have across the country.
And I volunteered one summer to help with a summer camp. But every day that I walked over to the courtyard where we would meet the patients, I walked by and I’ll never forget this, a crib, a baby crib that had a three or four-year-old little girl, and every single day she was constantly seizing. So somehow that memory, I think, found its way into my subconscious, and that’s the connection I have with epilepsy.
Kelly Cervantes:
I’m fascinated as to why doctors go into the specialty that they do, and your journey is so fascinating. You make this decision to go into epilepsy, and you don’t just become an epileptologist or a neurologist. You have moved mountains within the epilepsy community. American Epilepsy Society president, you were a founding consultant helping Susan Axelrod with CURE Epilepsy. Your career accomplishments are so long.
And we are just so grateful that for all of the wild reasons that led you here, that you’re not still mountaineering in South America, but you have taken all of these talents now and are focusing on helping create an epilepsy national plan, working with EAN, the Epilepsy Action Network, amongst others. Talk to us about the current epilepsy landscape and what we know and understand about epilepsy. What is driving this need for the national plan?
Dr. Daniel Lowenstein:
As I look at the landscape of epilepsy, it’s a mixed picture. On one hand, there have been tremendous advances that have enabled us to make the diagnosis and bring more sophisticated approaches to the therapy and the needs of people living with epilepsy. And that includes things like development of new medications and new surgical approaches and amazing in neuroimaging.
But on the other hand, I also unfortunately think a lot about the fact that if we look at the ability of our therapeutic approaches to actually bring seizures under control for many, many people living with epilepsy, we haven’t made a lot of progress in over 50 years.
And I’m sure many of your listeners know this hard cold fact, which is that regardless of the medications that we have to offer, whether it was 50 years ago, 10 years ago, or even now, the likelihood of bringing someone’s seizures under complete thorough control is still about two-thirds, which means about one-third of people, despite everything that we try to do, will still have uncontrolled seizures.
And not to overemphasize this because it’s so depressing to think about, but I have to say it, and that is of the two-thirds of people where we do a good job of bringing the seizures under control, a very significant number of them have side effects from the medications.
And your listeners know what I’m talking about. So again, on one hand, there’s been so much progress, but almost in an equal way, I see a tremendous amount that we need to be able to do going forward for us to ultimately achieve our goal, which is for people… Well, the main goal is to never have epilepsy again, that we get rid of the disease entities completely.
Kelly Cervantes:
Absolutely. It’s extraordinarily frustrating that that two-thirds statistic has not moved in 50 years, even with all of the new treatments, even with all of the new research that is being conducted, which I think just pushes us toward the need for further research and further understanding. How is research currently being conducted? How is it being funded, and who funds a majority of that research?
Dr. Daniel Lowenstein:
Yeah, so the vast majority of research related to epilepsy is being done by academic medical researchers. So individuals who are faculty and other associated personnel, faculty, staff, postdocs, graduate students who work either in research labs or who are part of clinical research studies that are mostly based again at the various universities across the world. And I’ll focus in, of course, for now on the United States.
A certain amount of research is done in the biotech industry and in pharma. But relatively speaking, the amount of work that’s done in that space is nowhere near what’s done in the academic medical centers. The funding for this, of course, there has to be resources to make this happen. The universities provide parts of the infrastructure so that, for example, someone can actually have a lab to work in. But the funding comes from a whole bunch of different sources.
The main source for us in the United States is the National Institutes of Health, especially the National Institute for Neurologic Disease and Stroke. But there’s also funding that has come from the Centers for Disease Control, the CDC, the Department of Defense, of course, CURE Epilepsy, and other important foundations like the Epilepsy Foundation, the American Epilepsy Society, which is the group that the professionals within epilepsy participate in.
There’s also a modicum of funding that comes from individual academic medical centers and universities, and that would be through intramural or internal grants that a number of us have benefited from over the years. And then finally, incredibly important is philanthropy from family foundations and individuals, which has been a very, very important source. You probably want to know how is it actually funded. So let’s focus in for a moment on the National Institutes of Health.
So in 2024, NIH allocated roughly $242 million to epilepsy research, which that’s a notable amount. Of course, the overall budget of NIH, at least up until this moment, is around $47 billion. So it’s a tiny percentage. That number is notably lower when we compare it to other common neurological disorders like Alzheimer’s disease, which has received almost $4 billion, Parkinson’s disease, which is far less common, but has about $250 million.
But that’s the main source. Also of note, and certainly CURE has had a leading role in all of this, is the relationship with the Department of Defense, the DOD, which allocated about $12 million to epilepsy research through the Epilepsy Research Program or ERP. And that funding has been focused on, no surprise, on the relationship between traumatic brain injury and epilepsy.
I do want to point out, and this is going to also not be a surprise, that since the Epilepsy Research Program’s inception now about 10 years ago, Congress has allocated almost 100 million to the program. But this year, Congress enacted a almost 60% reduction in the overall budget for the DOD. And that’s essentially been, what I heard anyway, is close to a suspension of the Epilepsy Research Program. We also know that in the CDC, the cuts that have already occurred are unfortunately very much including epilepsy related work.
Kelly Cervantes:
Yes. I think all of the employees at the CDC who are working on epilepsy have been let go. So even if there is funding, there is no one to do the actual work. So Dr. Lowenstein, we’ve established the landscape of epilepsy and epilepsy research as a disease or disorder. It is complicated as a research landscape.
It is increasingly more complicated than it has been in the past, which brings us to this ever-growing need, there has always been a need, but now I feel like it is even more important, this idea for a national plan for epilepsy. Epilepsy would not be the first one. There are other disease states that have had national plans and found success before us. So talk to us about what a national plan actually is.
Dr. Daniel Lowenstein:
The idea of a national plan would be an act by Congress that would require the Department of Health and Human Services to establish a very coordinated federal effort with the goal of achieving better outcomes for people with epilepsy and to prioritize the development of more effective treatments.
And the whole idea would be to harness the power of the federal government, which has the ability to demand for better surveillance of people living with epilepsy, to have a better idea of what living with epilepsy, how it actually impacts people, individuals with epilepsy and their family members, what the interaction is between our citizens living with epilepsy and the healthcare system that we provide.
And of course, providing more and more resources for the absolutely essential research that needs to go into coming up with the effective treatments and the cures that we talked about previously. It’s an overall way of focusing in on the needs of people living with epilepsy.
Brandon:
Hi, this is Brandon from CURE Epilepsy. Since 1998, CURE Epilepsy has raised over $90 million to fund more than 285 epilepsy research grants in 18 countries. Learn what you can do to support epilepsy research by going to cureepilepsy.org. Now, back to Seizing Life.
Kelly Cervantes:
Diabetes, Parkinson’s, Alzheimer’s, they’ve all had national plans before us. Did they find success with them? How did those work out?
Dr. Daniel Lowenstein:
Yeah, so you’re right that this approach has been used before. This is not new, and conditions like cancer, as you mentioned, diabetes, Alzheimer’s, and others. In fact, just last year, Congress passed a national plan for Parkinson’s. So that gives us the benefit of learning from what other communities have already done. Believe me, from the folks who have worked on federal legislation and in particular national plans, we know that it takes time for these plans to come to fruition, but that they actually do work.
So let me give you an example. In Alzheimer’s, we’ve seen incredible leaps in our scientific understanding of this disease. For example, 20 years ago, we knew of I think it was four genes associated with Alzheimer’s disease. And now that number, at least as of two years ago, is up to over 70. And before the national plan, there weren’t any biomarkers for Alzheimer’s disease. It can only be determined by autopsy.
And of course, this tracks with epilepsy, where unfortunately at the moment we have no biomarkers. But there have been the development of imaging biomarkers for Alzheimer’s disease. Also, one other example, Alzheimer’s disease in 2015, there were 38 clinical trials. I looked this up last night. In 2022, there were more than 400 clinical trials.
Kelly Cervantes:
Oh my gosh!
Dr. Daniel Lowenstein:
Yeah. And finally, if you look just at funding, at the time when the national plan for Alzheimer’s was passed, which is now more than 10 years ago, funding per year was 500 million. Now, that’s a lot. It’s more than we currently have for epilepsy.
Kelly Cervantes:
I was just going to say that.
Dr. Daniel Lowenstein:
But since the passing of the national plan, and I’ve spoken to my colleagues who devote themselves to Alzheimer’s, I’ve spoken about this and asked them how much has the plan itself had an impact on what’s been going on in the field. And they’re very clear that the plan has allowed for the things that I’ve just mentioned, the increase in clinical trials and biomarkers, but also the funding. So the funding was 500 million a little more than 10 years ago. The funding is now 3.8 billion.
Kelly Cervantes:
Oh my word!
Dr. Daniel Lowenstein:
Yeah. We know that research funding gets us innovation and improved health outcomes. That’s why we’re doing this.
Kelly Cervantes:
Yes, absolutely. It is so, so greatly needed. Talk to us about the organizations that are behind this, because it is no small feat to try and put together a plan like this and what it takes to organize this effort.
Dr. Daniel Lowenstein:
Right. So this has been truly a grassroots effort. So a number of individuals in the epilepsy community, parents, people living with epilepsy, people involved in CURE and the Rare Epilepsy Network, many others have been thinking about this idea for a number of years, and it was their work that ultimately led to a bringing together of many, many stakeholders. Now, I’ve been very involved in the work of the Epilepsy Action Network or EAN, as you mentioned at the top of the hour.
And that group has helped to lead the government relations and advocacy work around the national plan. And I want to make sure that our listeners can learn more by visiting a website. We can provide this to the listeners, but it’s epilepsiesactionnetwork.org, where we have the background on the efforts, statistics on the epilepsies, and the messages and materials for getting involved. And as I’ve already said, EAN is a coalition.
And as of now, we have about 70 or more than 70 partners, and we are continuing to urge organizations, people, anyone associated with the epilepsy to join in the effort. And you can see on the website the list of the partners from around the country. Some of them are really big, some of them are really tiny, but all are focused in one way or another on the people living with epilepsy. And we really want to have as much of an engagement as possible because the numbers and the unity of this collaboration are what really matter.
Kelly Cervantes:
We know that this is needed, right? You have outlined all of these statistics as to what we could potentially accomplish, what the community gains from having a national plan. It’s all nice and good that all of these organizations are coming together, that the need is recognized, but how do you actually make that happen? How do we get from yes, we need this, yes, we are all working together, to making it actually occur.
Dr. Daniel Lowenstein:
As I already mentioned, this is not my area of experience and expertise, but I’ve been incredibly lucky to see the work of, again, our collaboration of stakeholders with the Epilepsy Action Network really helping to organize what needs to be done. And so here’s what’s been happening, a starting point is to get the attention of the legislature in our federal government.
And so that requires a caucus, a group of people who are senators and representatives who have decided that this is something that they want to make happen. And those caucuses are committees of legislators who are signaling that, hey, this is something that we’re concerned about. So because of the effort of all of us collectively and the fantastic work of our government relations folks within the Epilepsy Action Network, we have four lead members of this caucus.
Two are in the House of Representatives. That’s Representative Jim Costa from California and Representative Greg Murphy from North Carolina. One a Democrat, one a Republican. And then similar in the Senate, Senator Eric Schmitt from Missouri and Amy Klobuchar from Minnesota. Again, a Republican and a Democrat. So these four folks are co-chairs of the Congressional Epilepsy Caucus.
And two of the co-chairs I’ve learned, and I’ve met them, are parents of children who each have epilepsy. And if you listen to their stories, you can see the wide spectrum of the experiences that they’ve had as families living with this disease. Senator Schmitt’s son has a very rare and complex epilepsy. Representative Murphy’s son is controlled now after what I learned was many, many years of interventions. And so these are folks who are passionate and totally get it.
Kelly Cervantes:
That they have a vested interest in seeing this push forward, which is I think incredibly important to have people who have firsthand knowledge of how complicated epilepsy can be and all of the various impacts even if you are controlled.
Dr. Daniel Lowenstein:
Yeah, definitely. And let me just mention that listeners can learn more about the caucus by going to the epilepsiescaucus.org/leaders website. Again, that’s a URL that we can provide to everybody.
Kelly Cervantes:
We have the Epilepsy Caucus. We are working with them trying to rally support to get an epilepsy plan passed. At the beginning of our conversation, we were just talking about all of the cuts that have been made. We’re looking at potentially 40% to the NIH budget. You were talking about 60% to DOD. We actually don’t have anybody employed at the CDC currently who is working on epilepsy.
So this is really kind of a dire time for medical research across the board, but especially for epilepsy. I wonder, not to be harsh, but is this even feasible? And what is the specific ask here? Are we asking for money? You’re trying to get this plan passed. I’m trying to figure out is this something we can even do?
Dr. Daniel Lowenstein:
Yeah, great question. And to be honest, it’s something that I’ve been struggling with to some degree because one could ask, things are just so different, and you might say crazy right now in terms of what our society, our country is going through. And it’s really, really difficult to know where things are going to end. But to be totally honest, I am not in any way I dissuaded or moved from the absolute need that we have to create a national plan. And that’s because our community deserves better than what we have.
And this is an illness that everyone knows. It affects 3.4 million Americans, one in 26 people. So the way I’m currently looking at the situation is it currently feels as though it’s going to harm our ability to make the advances that we need to help people living with epilepsy. There’s no question that I worry about the direction we’re currently going, but I’m convinced that we’re going to be able to come back. So yes, in the moment, this is not the ideal time to be asking Congress for a commitment to anything that might cost money.
But again, that just does not deter me, nor the people, all of us who are working on this plan, from essentially saying, “Well, we’re not going to just wait until things get better. We’re just going to work on this as hard as is necessary.” So the first step is actually complete, which is that the National Plan for Epilepsy Act has been introduced to Congress. And so now critically we’re working to build support for the bill in both chambers and with both parties.
Kelly Cervantes:
And now it’s my understanding too that the bill itself is not necessarily asking for an extraordinary amount of money. It is just that the plan is asking for there to be additional focus, which in the long run means more money, but passing of the plan is not an exponential amount of money on its own.
Dr. Daniel Lowenstein:
Right. So Kelly, the point you made is absolutely critical, and that is that this initial legislation is to get the federal government to set up the approach for creating a national plan. So it would be telling Department of Health and Human Services to commit to the steps that are involved in creating a document basically that describes what a national plan will be.
And then once that’s done, there will be subsequent legislation that would bring the resources necessary to actually enact the plan. So I don’t know the exact cost to all of us as taxpayers to go through the steps of creating the plan, but it’s on the order of some number of millions of dollars, but it’s not hundreds of millions. It’s not billions.
But the plan ultimately is going to be that once we have a formal national plan for epilepsy, that when the time is right, the federal government will commit what will hopefully be really significant resources for improved access to healthcare, for better surveillance, for removing the disparities associated with epilepsy, for coming up with new therapies, for new cures, the research. And that will be hundreds of millions of dollars, hopefully billions of dollars over the coming years.
Kelly Cervantes:
You bring up something that I want to focus a little bit on because the goals of having the plan are not just for additional research for cures or for additional therapies. It is also to address those that are living with epilepsy about that access to care, about the disparities in the quality of care that patients are receiving across the United States. Talk to us more about that. I know that’s something that you have invested your own time and research on specifically is these disparities in epilepsy care. Talk to us about who is impacted by them and why.
Dr. Daniel Lowenstein:
Yeah. So your question gets at a really interesting, important dynamic that I’ve bared witness to over my entire career, and that is this tension between the need for effective therapies and cures, which can only happen through research. It’s the only way that happens. And on the other hand, the absolute need for improving the lives of people currently living with epilepsy.
And gosh, I’ve heard so many debates and arguments about which one is more important. And from my perspective, they are of truly equal importance. We need to have tremendous attention on both ends of the spectrum and everything in between. So when it comes to the disparities that exist for people and families living with epilepsy, there are many aspects of that.
It includes accessing resources, ability to have access again to education, the ability to have the kind of expert multi-specialty care that really is required for many people living with epilepsy, unless it’s the most straightforward, simple, and completely treatable form. The economic disparities in terms of affording quality care, the geographic disparities for those who are in rural areas and others who are not physically close to specialty care and can’t travel.
And also, I think many people don’t appreciate that epilepsy as a term is a misnomer in itself because it’s just a complex of hundreds of underlying causes, which include seizures. So the care that’s needed for people living with epilepsy is not limited only to trying to get their seizures under control. And I think as we talked about before, the disparity and the lived experience of people living with epilepsy.
So there are some folks who are unlucky to have developed epilepsy, but turn out to be very, very fortunate because they’ve been put on one medication, they’ve never had another seizure, they don’t have any side effects, and they’re able to live a completely normal life. And on the other hand, we talked about the one-third whose seizures are not brought under control.
And some of these individuals barring the advances in research that we’re going to make, but for now, they’ll never live independently, and they rely on caregivers for all activities of daily living. That’s bathing, eating, toileting, walking, communicating, and they’re really incredibly fragile and require around the clock care. So it’s just an immense universe of need out there. And the goal for us as a society should be to address the needs of every single individual living with epilepsy and their circle of loved ones.
Kelly Cervantes:
Absolutely. Dr. Lowenstein, you’ve done such an incredible job of explaining this balance between the medical research versus the need to help those who are living with it in these disparities and access, why we need it. We have the Epilepsy Caucus. The plan has been presented. Now it is trying to rally support, correct, amongst senators, amongst our representatives to try and get this pushed through in a more challenging environment than we have faced anything in healthcare in the past.
I can only imagine that folks listening right now are excited to hear about this plan. I personally, I’m like, I cannot even imagine if this gets through. Thinking of how plans have helped other disease states, what we could be looking at 10 years from now in terms of epilepsy treatments, cures, access to care, all of these things, what a far way we could get. How can people get involved?
Because it is going to take all of us, I think, to impress upon our representatives just how affected so many of us are, 3.4 million, one in 26, but that expounds to the families, like you said. So many more people are impacted more than that one patient. How can we help?
Dr. Daniel Lowenstein:
Okay, so this is the most important part of this discussion. I mean, I hope the things that we’ve been talking about have been of interest to all of you listening, but this is the most important thing. We can’t let the current situation paralyze us and make us feel even more like there’s really nothing that I can do. We have to keep our eyes on the prize. And that’s what we’ve been talking about, which is getting our society through the ability of our federal government to provide resources to commit to a national plan, to commit to improving the lives of people living with epilepsy.
As you mentioned at the outset, I’ve been involved in this field for now more than four decades. I’ve seen a lot, and there has never been a moment in my professional lifetime like this one, where through grassroots efforts, we have come to the point where we can actually do something. This is an amazing moment in time. And for anyone who says, “What can I do,” you can actually do something.
And that is for people to get access to go to the websites that are available through all of our different organizations and learn more about what the national plan is actually about, similar to you listening to what we’ve been talking about today, and then looking at the actual things that you can do. Yes, it does involve getting in the face of our legislators and letting them know how important this is.
And again, I’m not a government relations expert, but I’ve watched enough to know that our Congresspeople react to what they perceive where the political wins are and what their constituency is saying. It’s as simple as that. And so it’s all about numbers. And again, over the course of my career, I have never seen such an opportunity for the epilepsy community to bring its voice together as loudly as we have the capability of doing.
And that’s just going to depend on every single one of us as individuals. So go to the websites and learn about how to sign up for the various meetings that take place. The Epilepsy Action Network has a regular meeting at least quarterly, where you can get an update on what’s been going on. And all the individual organizations that you’re associated with this do the same.
These are by Zoom, so you don’t have to travel anywhere. And we’ve been accumulating a big list of people living with epilepsies as well as the people who care for them, and the opportunity to reach out and meet actually with key legislatures on Capitol Hill. Just ask your members of Congress. That’s just easy to find the information and get those Congresspeople to sign onto the national plan.
And it’s your stories as listeners shared from the heart that will drive the change. There’s a one-stop voter voice email system. You can look up your legislators and personalize the message. There’s actual messages and materials on the websites. There’s links to key epilepsy facts so that when you write to your legislatures or meet with them at Capitol Hill, you’ll be armed with the kind of information that we’ve been talking about.
And there’s also national plan social media and downloads. Let me also mention, I’ve referred to our government relations work. This has been led by a spectacular team called G2G. And I encourage anyone to reach out to Katie Collins. And again, we can provide her email address, but it’s kcollins@g2gconsulting, if you’d like to write to her now.
Kelly Cervantes:
Yeah, we’ll put all of these links and stuff in with the podcast information. And I want to stress, I know from other government work that I have done in the past how important those personal stories are in swaying the minds of our government representatives. And also because we are in a Republican-led government right now, if you live in a state where your representatives are Republican, your stories are that much more important.
They’re going to hold that much more sway over our representatives. Of course, we want everyone’s stories, but it really is those who have Republican leaders that they need those stories. They need your voice to reach your representatives to really try and push this plan through. Dr. Lowenstein, this episode has gone longer than most of our other ones, but I think it is so incredibly important.
I’m so grateful for your time. I cannot let you go though, however, without asking you, as someone who has been in the epilepsy field for 40 years as a researcher and a clinician, what is something that you are most excited about, a piece of epilepsy research that you find to be the most promising?
Dr. Daniel Lowenstein:
Oh, Kelly, that’s quite the question. There’s no way that I can just pick one example of what’s been going on, but here are at least a few. For sure, genetics. I mean, it’s been astounding the advances that have been made in genetics. And just as one small example, 15 or 20 years ago, if a little infant, a young child developed a severe form of epilepsy, we knew that it was likely related to genetics, but there might’ve been a handful of genes that potentially could be the cause. And we rarely were able to make the diagnosis less than 5% of the time.
Now, in 2025, hundreds of epilepsy genes have been identified. And for those, again, particular forms of epilepsy were more severe forms in infancy and early childhood. We are now making the diagnosis in more than 50% of those kids. And of course, the connection between making the diagnosis identifies the target, if you will, in the brain, the molecules that are actually causing the seizure disorder. And once we have targets, we now have ways of knowing how to target the therapy towards those molecules.
So that’s incredible. Stem cell therapy, major advances over the last decade beyond neuromodulation stimulation of the brain, a game changer for some number of people with epilepsy that never responded to medications, but now they have a device that allows them to be aware of when a seizure is starting to build and to potentially stop it. And it’s tracked. I already referred before to neuroimaging and the astounding advances in our ability to identify structural abnormalities.
Seizure forecasting is very cool. And we’re getting closer and closer to effective devices that are going to enable a person with epilepsy to have a sense of the likelihood of a seizure occurring over the coming hours or even days. And then finally, I just have to bring up what I think may be one of the most spectacular discoveries that I’ve seen certainly in the last couple of years, and that’s the work out of Avtar Roopra’s lab in Wisconsin led by one of his trainees, Olivia Hoffman.
And what they’ve discovered and what was recently published in Science Translational Medicine just a month or so ago is that a certain immunomodulator drug, that this drug when given a few weeks after an inciting event that would normally cause epilepsy in a preclinical model, that that drug is able to stop the development of epilepsy in the first place.
Kelly Cervantes:
A true cure.
Dr. Daniel Lowenstein:
Yeah. So rather than being an anti-seizure medicine, which is what all the meds are that our patients take which stops seizures, none of them stop the epilepsy itself. And this has definitely been one of the holy grails of all the work that we’re doing, which is to come up with a way of preventing epilepsy from occurring in the first place. And so this is one most recent and beautiful, great example of why there’s so much reason for hope.
Kelly Cervantes:
And a lab, I have to add, that has received CURE Epilepsy funding in the past too. Not to toot our own horn, but it’s really incredible to see the small grants that we are able to provide turn into additional funding that can create massive discoveries like this. It is truly, truly exciting. There is so much hope out there. Dr. Lowenstein, thank you so much for speaking with us today, for giving us hope, but especially for your 40 years of treating our community. And I don’t think you will ever truly understand how much it means to us.
Dr. Daniel Lowenstein:
Thanks so much.
Kelly Cervantes:
Thank you, Dr. Lowenstein, for explaining the national plan for epilepsy and what it could mean to the epilepsy community. And thank you for your years of work in the field as a clinician, researcher, and advocate. The parents who started CURE Epilepsy over 25 years ago recognized then the need for more awareness, improved therapies, and more funding for the research that can lead us to a cure.
As our conversation with Dr. Lowenstein makes clear, in these times the need to fund epilepsy research is more vital than ever. If you would like to support CURE Epilepsy’s mission to fund breakthrough research, please visit cureepilepsy.org/donate. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs.
CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.