Webinar: Prioritizing the Role of People with Lived Experience in Epilepsy Research

The role of people with epilepsy and their support system in research has been evolving over the past couple decades as research and the corresponding care and treatment of epilepsy become more patient-centric. Involvement of people with lived experience early in the research process helps ensure that healthcare professionals treat epilepsy in a more holistic manner, not only by alleviating the impact of seizures and their debilitating side effects, but also by recognizing that everyone’s epilepsy journey is unique.

In this webinar, attendees will learn specifically about the importance and impact of people with lived experience in research of post-traumatic epilepsy (PTE). Attendees will hear about the Congressionally Directed Medical Research Programs (CDMRP), a Congressional appropriation that fills research gaps by funding high impact, high risk and high gain projects that other agencies may not fund, as well as the CDMRP’s commitment to community engagement. Additionally, people with lived experience who are deeply involved in the CURE Epilepsy mission will share their unique experiences in helping move PTE research forward.

 


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About the Speakers:

Melissa Miller, PhD, is a Health Sciences Program Manager with the United States Department of Defense. Dr. Miller is a biomedical science administrator with an innate sense of urgency to support research that accelerates clinical application of disease interventions. She oversees the Epilepsy Research Program (ERP) within the CDMRP and engages stakeholders across different research domains to identify and fund projects with real promise to improve the quality of life for those impacted by epilepsy. 

Jack Somers is a Captain in the United States Marines Corp (Ret.) and who served his country in Afghanistan. Jack serves on the Steering Committee of CURE Epilepsy’s latest project in PTE research. 

Patty Horan has been a long-time supporter of CURE Epilepsy and currently serves as a lived experience reviewer for the CDMRP ERP. Patty’s husband, Pat Horan, suffered a traumatic brain injury in 2007 and overcame his grave diagnosis and the devastating consequences of the corresponding PTE and now is nearly 10 years seizure-free.


Q&A

Because science isn’t your background. This is all new to you. So why did you want to participate in research as a person with lived experience? What compelled you?

Jack Somers: I think the most important part to me was to serve. Ultimately, that brings me the most amount of joy. I hope that’s not a selfish response, but it is. Serving the community is the utmost importance to me. And given I do have experience, and I have so much experience over the last 14 years, the opportunity to give back, and hopefully, if it’s helping one person who has this, or helping one mother, father, wife, husband, son, daughter, anyone, a friend, who is a loved one of somebody who has PTE, then that’s, then sign me up. Anything I can do from my position is worth it. And so, service is everything to me. And so, anything I can do from my position is an obligation of mine.

 

Patty Horan: I guess I agree with Jack, and the fact that I’ve seen so much suffering in the veteran community is unbelievable. And if there’s anything that I can do to reduce the suffering of people in this community, they deserve it all. I mean, they deserve our attention, our focus, and anything we can do to relieve some of what they’re going through is worth it. This war is awful. But I feel like this contributes to not just veterans, but the society as a whole. Because we’re learning how to better take care of our brains, and everyone’s got a brain. And I think that it’s just a really important mission.

And I will say, I am not a scientist at all, I have a business background. And it’s very scary at first to get involved in the research. I have a little selfish reason to, just to be engaged with all these brilliant scientists, that actually can give me a better understanding of how to help my husband, how to support him. And understanding of what the broader picture of epilepsy looks like, and what’s happening out there, as far as access to care, and just the latest and greatest medications, and what’s going on in the clinics.

It is daunting without having a science background to step into a role like yours, where you are discussing with the science, with well-established researchers. What were your greatest concerns when thinking about this, when you were engaged with this? And how did you overcome those concerns?

Patty Horan: I think in the beginning it was really, it’s a totally different language. It’s like walking to a foreign country, going into like, what are they saying?

So the good thing about the ERP is, you do get some time. Each person is given five projects to evaluate, and you get a couple of weeks, look over all of these. You do have to present them and speak the language, but you have a co-presenter. So if you mess up or if you didn’t get it quite right, you have somebody else to swoop in and fix it up a little bit. But the whole panel discusses everything later too, so you’re not alone.

And I think a little of it was just ignorance, because with the first panel I sat on, I was very overwhelmed. On the first break, I went outside, and I was like, “What am I here for?” But people were so gracious, they were so nice. They were so thrilled that I was there. They felt like they thought that my opinions were valuable, which was amazing, because these are some of the smartest people in the country. So it was very scary at first. And I fumbled through presenting probably the poor researchers that got me. But I did it. And every year it gets easier, and I understand the brain a little bit more. And I’ve made some great, I’ve met some great people with CURE, and just the people on the panel are just the best people. And Melissa, and it’s been overall, a great experience.

Jack Somers: I mean, similarly to Patty, I came into it with, I would say, I was a little naive, but very excited to join this group. I didn’t know a whole lot about it, but I was okay with that. I just wanted to serve and give back, and if they were willing to let me join, that was enough. I was just so excited that they were willing to let me join.

It was really the first advisors call that, like Patty, I was just blown away by they’re going through their different milestones and what have you, and the verbiage, all of the scientific research that they had done. And I just didn’t know the level of expertise that these folks had, and I didn’t understand a lot of it, but conceptually I could get it. And so, in order to overcome it, I kind of just used that old, the acronym, keep it simple, stupid.

But I just had KISS, and I just said that the best way that I can overcome this is to just keep it simple. And when I did that, I just listened and I kept it simple, and all of a sudden, I understood what they were talking about. And it was incredible, because I learned that all of these folks, who just like Patty said, some of the most brilliant neuroscientists, and epileptologists, and folks in the world, amazing. At Cambridge, at Texas Tech, at UCA, research groups, they are trying to solve the problem that I have. And they could do whatever they’d like, but there they are, and they’re passionate about it, and they’re working on this all the time.

And it actually, it almost brought me to tears. Because I said, “Why are they doing this? Why are they working on this problem?” They could do anything in the world, and they’re trying to solve the problem. They’re trying to answer the questions that I’ve been trying to answer, and keeping it simple. Let me learn. Let me figure out just what they were trying to do. And so, I then didn’t have to worry too much about all the words that they were using. I just got to listen to generally what they were trying to do, and it blew me away. It still does, every single time I listen to them.

What do you feel is the value in sharing your voice? And what do you hope your participation achieves in doing this? So what’s to the value, and what do you hope the outcomes will be?

Jack Somers: I hope that I can use my experience to give back and help one person. I hope that I can serve again. I hope that I refuse to let my experiences be lost in translation, or be just mine. I refuse to let them go to waste.

And so, my hope is that they get leveraged, is that they’re used in ways that we are just learning how to use them, and how they were used five years ago or 10 years ago is actually just the beginning. And that we learn how to use my experiences more and more, and in more efficient, more effective ways as time goes on. That’s my goal.

Patty Horan: Well, a little bit more support for caregivers and the families. So the VA, the Veterans Administration, they need concrete evidence of what’s happening in our households. They don’t necessarily understand the toll of epilepsy in a household, on a life, especially uncontrolled epilepsy. So I feel like I contributed, at least to start looking at quality of life studies.

We have some of those in our portfolio, and I feel like I push for that. And I’m hoping that the data from those studies will be concrete evidence for the VA to actually compensate these families better, that have epilepsy. They will give them better services, better access to care, and also, home health benefits. Because some of them, and we were at this point in the beginning where I couldn’t leave Pat alone for five minutes; but we didn’t qualify for any of those services, because he’s not injured enough, or the epilepsy didn’t qualify him. So it’s interesting. So I’m hoping that out of with my voice, the value will become, will be that veterans are better supported with epilepsy by the Veterans Administration, and there’s a better understanding of the daily life.

Dr. Miller, what are your hopes and visions for the future of lived experience participation, and how we go back to how can people get involved?

Dr. Miller: So I think my greatest hope for the near future is for more researchers and people with lived experience to have the conversations that we were just having. It’s so important to have opportunities for these conversations, to force opportunities for these conversations, because without them, the researchers are doing their best, but they are not the experts in your experiences. And we need you to tell them, and guide them into what is the most important and impactful questions to be researching for policy change, for care change, for overall change. And that’s what I hope really will impact the future.

And the way that people can get involved with the ERP is just going to the CDMRP website. We have a big banner on our website that says, “Get involved.” And if people are interested in reviewing for us, in consulting on projects, let us know. We can help connect you to the necessary people. I’m sure, Laura, that your organization also has opportunities. I think there’s a lot of opportunities, and we just need people, and their generosity of time to volunteer, and we can make a really great impact in this field.


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 condition be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.

International Conference on Post-Traumatic Epilepsy (IC-PTE): Roadmap to Prevention

Join us in May 2024 in Milan, Italy, for the International Conference on Post-Traumatic Epilepsy (IC-PTE) where scientists will gather with a common goal: to forge a path to the prevention of PTE. While advancements have been made in the field of PTE, key challenges remain. The IC-PTE will unite global experts and early career investigators in traumatic brain injury (TBI) and PTE to discuss scientific advances and challenges in the development of interventions for PTE, with the goal of building an actionable plan for the development of treatments and preventative therapies.

CURE Epilepsy is partnering with researchers at the Mario Negri Institute for Pharmacological Research to host this event. The conference will focus on the following topics within PTE and TBI research:

  • Preclinical PTE Research
  • Multimodal Biomarkers of TBI or PTE
  • Clinical PTE Research
  • Data Analysis and Data Sharing Infrastructure
  • PTE Therapeutics and Preventative Strategies

 

Take advantage of the opportunity to present your research by submitting an abstract for a poster presentation. Early career investigators and individuals from diverse backgrounds and economically developing countries are highly encouraged to apply for a presentation and/or travel award. Abstract submissions are now open and will close on April 30, 2024.

Don’t miss out on this exciting opportunity to shape the field of PTE. Take advantage of early bird registration rates; the deadline for early registration is March 31, 2024. We hope to see you there!

We thank the National Institute of Neurological Disorders and Stroke, the American Epilepsy Society, and the International League Against Epilepsy for providing financial support.

Post-Traumatic Epilepsy and Cognitive Training: Improving Quality of Life Through HOBSCOTCH

Post-traumatic epilepsy (PTE) is a form of acquired epilepsy that results from brain damage caused by a traumatic brain injury (TBI). People diagnosed with a TBI are 29 times more likely to develop epilepsy compared to the general population1. Individuals serving in the military may be especially susceptible to PTE. In fact, over 400,000 US Military personnel were diagnosed with TBI from 2010-20192, putting them at subsequent risk for developing PTE. 

This webinar provided an overview of PTE and cognitive dysfunction, as well as some strategies to help improve the quality of life of those with PTE and their caregivers. The webinar will also provide details about HOBSCOTCH (Home Based Self-Management and Cognitive Training Changes Lives), a behavioral program designed to address memory and attention problems in adults with epilepsy and discuss a clinical trial opportunity for veterans and civilians living with PTE. 

The webinar is intended for everyone, including persons with epilepsy, their friends and family, and caregivers.

1.  Herman ST. (2002) Epilepsy after brain insult: targeting epileptogenesis. Neurology 59:S21–S26. 

2. DoD Worldwide Numbers for TBI, Defense and Veterans Brain Injury Center, 2020 


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You can also learn more about the HOBSCOTCH program by watching or listening to our Seizing Life episode Learning to Manage Cognitive Challenges for People with Epilepsy featuring Dr. Elaine Kiriakopoulos.


About the Speaker:
Dr. Elaine Kiriakopoulos is an Assistant Professor of Neurology at the Geisel School of Medicine at Dartmouth College, and the Director of the HOBSCOTCH Institute for Cognitive Health & Well-Being at the Dartmouth-Hitchcock Epilepsy Center. Her research and programmatic efforts target building multisector partnerships to reduce disparities in the care of people with epilepsy, ensuring the most vulnerable populations have access to quality epilepsy care and community resources.  


Q&A with Dr. Elaine Kiriakopoulos

Could teenagers eventually participate in something like this?

I’m excited to share that we’re currently working on an adaptation for HOBSCOTCH youth, which will target adolescents between the ages of 14 and 18. We’re hoping to pilot that early in the new year as well. And so more information will come forth on that, but we feel like the program has a lot to offer adolescents as they transition to becoming adults, and helping with organizational skills, and disease management skills, as well as social skills. We’re really excited about that program. And coming along with that program is a HOBSCOTCH app, specifically for youth, targeted to youth. We think that’ll be exciting for them as well, too.

Do Georgia-based HOBSCOTCH participants need to be under the care of an Emory neurologist?

No, not at all. You can contact us, and we’ll make sure we can connect you to the team in Georgia at Emory. You can have your care with anyone in Georgia. We’re happy to have you join.

Interested in the program?

hobscotch.org

 

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 health care 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 condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.

Webinar: Post-Traumatic Epilepsy (PTE)

Dr. Ramon Diaz-Arrastia, Professor of Neurology, University of Pennsylvania
CURE presents a leading expert on Post-Traumatic Epilepsy

In CURE’s Leaders in Epilepsy Research webinar, participants hear from a leading expert on Post-Traumatic Epilepsy (PTE), epilepsy resulting in physical trauma to the brain. The webinar reviews efforts underway to advance our understanding of PTE, as well as the exciting new therapies being developed that may one day result in a cure.

It is presented by Ramon Diaz-Arrastia, MD, PhD, of the University of Pennsylvania. Dr. Diaz-Arrastia is an expert on the molecular, cellular, and tissue level mechanisms of trauma-induced neuroregeneration and injury-related synaptic plasticity. He works to develop effective therapies for Post-Traumatic Epilepsy.

Plus, hear more about the history and current state of PTE research from this episode of our Seizing Life podcast.


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Audience Q&A with Dr. Ramon Diaz-Arrastia

What strategies may be developed to help prevent post-traumatic epilepsy?

Through our work on understanding the mechanisms, I did point to some strategies that may be very attractive. So, I do think we now know that anti-epileptic drugs are not epileptogenic necessarily, and we rather need drugs that are going to promote the integrity of the axonal connections into the hippocampus. We may also need drugs that promote the repair of the blood brain barrier and perhaps block some of the long acting or long duration inflammation that occurs in the brain. So, the goal of developing or the mechanism of developing anti-epileptogenic drugs is really going to be tied in to these strategies to promote the integrity of resilience and recovery of these particular neural structures.

If you have decades of seizures and epilepsy and you’ve had multiple brain surgeries, would you say that you have a brain injury? Would that be an accurate statement? Obviously, it’s not a TBI, but would you call it an ABI?

Of course, I mean, I think obviously epilepsy can occur from many different consequences, but certainly anything that injures the brain, be it a traumatic insult to the head, or be it an ischemic insult or an inflammatory insult or an infectious insult can result in epilepsy. Now, many cases of epilepsy, such an insult is not recognized, which is not to say that it wasn’t there, right? It may have been a subclinical or a subtle insult, but nonetheless resulted in an injury. So, now, I do think the answer to the question is right, that in most cases epilepsy does result from some kind of injury and that discovering how that happens is potentially a value in preventing the development of epilepsy and also potentially treating the seizures after it already develops.

Are there specific symptoms that indicate if epilepsy is due to a brain injury as compared to other epilepsy causes?

Most patients who develop epilepsy after brain injury develop a focal epilepsy syndrome although it can be anywhere in the brain, right? It turns out that temporal lobe epilepsies appear to be the most common. There is something about the temporal lobes, particularly the mesial temporal structures that make it uniquely pro epileptogenic, but we certainly can have frontal lobe epilepsy, parietal lobe epilepsy, occipital lobe epilepsy. It can start from anywhere where there is an injury and the manifestations of the seizure obviously depends on where in the brain the seizure is starting. So, the manifestations of the frontal lobe seizure are going to be different from a temporal lobe seizure, or an occipital loop seizure. So, it’s the kind of stuff that requires careful evaluation, and in most cases require admission to an epilepsy monitoring unit for video EEG monitoring. But yes, one can determine what kinds of epilepsy develops from what.

We have a question about veterans and the prevalence post-traumatic epilepsy in the veteran population to other types of populations with head trauma?

Veterans are at a particularly high risk of suffering traumatic brain injury, and this is a consequence of their military service. Veterans or military personnel are at high risk of traumatic brain injury, obviously in combat settings but even during practice or during training and just living in a harsh environment is risky and there’s a high incidence of brain injury from that. Brain injuries are very common in a general population, but individuals who have served in the armed forces are at approximately a three to four fold increased risk of having a brain injury and a correspondingly increased risk of developing post-traumatic epilepsy. So, this is a major problem to the Department of Defense, Military Health System, as well as for the Veterans Administration Health System. A lot of the research in this area historically has been funded by the DoD and the VA.

Do you happen to know the percentage or approximate percentage of post-traumatic epilepsy patients that are candidates for brain surgery?

Unfortunately, that’s a very hard number to know. It’s certainly not the majority, but it could be as much as 10, 20%. I think everyone who has epilepsy that is refractory to medications, which means that they have been on good doses of at least two anti-epileptic medicines and they continue to have frequent disabling seizures. That is someone who regardless of the etiology of their epilepsy, regardless of the cause of their epilepsy, should be referred for Epilepsy Monitoring Unit Admission and Video EEG Monitoring to determine if they are surgical candidates. I think surgery remains an underutilized therapy option in post-traumatic epilepsy, as well as in many other causes of focal epilepsy.

What are your thoughts about the predisposition to Alzheimer’s after one has had a closed head traumatic brain injury?

This is another area my laboratory is very busy in investigating. So, it appears that individuals who sustain a moderate to severe traumatic brain injury are at greater risk of developing late life dementia. That risk is somewhere in the order of about three to four fold for severe traumatic brain injury. But then even mild traumatic brain injury increases risk of late life dementia modestly, but probably by around 30 to 50%.

Now, that doesn’t sound like much. On the other hand, given that late life dementia is so common, even a modest increase in relative risk does translate into a large number of cases. Now, whether that dementia is Alzheimer’s disease or whether it is some other kind of late life dementia, that remains to be proven, right? Again, that’s one of the things that we very much need to investigate is if we can identify what is the mechanism of that risk of late life dementia after a TBI, what can be done to prevent it? Do we have any strategies that could help in promoting the resilience or promoting the recovery of the brain after a brain injury? And we just don’t know yet, but it’s an area of very active research.

Do you feel that there is an ideal anti-epileptogenic drug profile?

The ideal anti-epileptogenic drug profile is one that controls the seizures 100%. It doesn’t produce significant side effects, right? Now, that ideal drug is going to be different for every patient, right? But many patients are able to find a drug or drug combinations that is ideal for them, meaning that it controls the seizures and allows them to continue their life without significant side effects.

Unfortunately, that only happens about 60% of the time. So, that is a significant number of people and many of the drugs that we have are good drugs, but that remains that about 40% of patients with epilepsy and that includes post-traumatic epilepsy as well as other causes are unable to find an ideal drug or drug combination that works for them. That remains a big problem, which certainly stimulates our work in the area trying to develop preventative therapies and also trying to develop better symptomatic therapies.

What about starting a ketogenic diet post TBI as a possible seizure prevention protocol?

I think that’s a potentially good strategy, right? There are some work primarily so far in animal models that a ketogenic diet appears to be neuroprotective, appears to prevent the death of neurons in some of the aberrant synaptic plasticity. Research in this area is very, very early, I must say. It’s so far mainly in animal models, but it certainly looks promising. Not an unreasonable approach to try.

What about researching the space dealing with devices such as brain cooling?

Likewise in animal models, there is very good evidence that cooling the brain soon after the injury prevents the development of post-traumatic epilepsy. In fact, helps in preserving neural structures and preventing neuro degeneration. So, I think that is likewise an attractive strategy. So far, it’s really only been tried in preclinical models. It appears that focal brain cooling is what’s important. There have been several studies in patients with TBI doing whole body cooling, and that does not appear to work as well. It’s mainly because cooling can have deleterious effects on pulmonary function and cardiac function and renal function. But focal brain cooling is certainly a promising strategy.

Do you feel that preventing hippocampal neurogenesis after TBI is a viable therapeutic direction for preventing mesial temporal lobe epilepsy?

So, there is neurogenesis in the hippocampus after TBI. In most cases, that is a good thing because that allows the recovery of memory function and attention and things that the hippocampus does. So I think one would have to be very, very careful about a strategy where one tries to prevent the normal healing pathway.

On the other hand, it is likely that as I mentioned earlier in my talk that post-traumatic epilepsy may result from those attempts of the tissue to rewire and repair itself, that some of those repairative processes may not be totally perfect and result in a circuit that is epileptogenic. So, I would say that one has to be very careful and one has to be very precise on strategy, such as this, and obviously develop strategies that target the aberrant neurogenesis and the aberrant synaptogenesis while leaving the neurogenesis and synaptogenesis that are important for more recovery in place.

Are sodium channel blockers therapeutic in post-traumatic epilepsy?

Dilantin for examples is one of channel blocker and it does not appear to be effective, although it blocks the early seizures, does not appear to be effective as an anti-epileptogenic agent. I would say that although not every sort of general blocker has been tested, more likely we are going to need alternate strategies to come up with a truly anti-epileptogenic compound. Those alternate strategies are going to have to rely on things like blocking inflammation or promoting repair of the blood brain barrier, or perhaps promoting integrity of the external pathways that become disconnected. I’m personally not that hopeful that just because a drug is anti-epileptic, that it will be anti-epileptogenic. I think the data we have so far seems to indicate that it’s not the case.

Are there any specific group of neurons implicated in post-traumatic epilepsy?

I think that there’s not any one specific group. I think that depends a lot on the location. I think what tends to happen is that when you have a brain injury, many neurons are lost and are damaged, and then the neurons that remain attempt to rewire in order to repair the function of the circuit. But that rewiring is sometimes not perfect and that’s how an epileptic circuit presents itself. So, it appears to be mostly the neurons that are relatively resilient to injury that may be responsible.

Again, I think it’s a two-edge sword. You would not want to prevent epileptogenesis with a strategy that also prevents the repair and recovery. We would have to be a lot more precise and a lot more clever to come up with strategies that prevent the aberrant synaptic plasticity while allowing the functional or the positive synaptic plasticity to persist.

Can seizure type after a traumatic brain injury be a basis for predicting the risk of recurrence?

I don’t think we know the answer to that yet, right? I think what very frequently happens that it often takes a while for the diagnosis of post-traumatic epilepsy to be made. When we talk to patients who have developed epilepsy after a brain injury in reality, they often have subtle behavioral problems or subtle memory problems that proceed the development of clinically apparent seizures. In retrospect, those were probably very small, very focal seizures that were occurring before the clinically apparent seizures presented themselves. So, I think the answer is that we’re going to need strategies that allow the diagnosis of post-traumatic seizures very early on in many cases before it’s very clinically apparent in order to develop effective therapies.

Are you hopeful about the near term future for patients with TBI?

I’ve been working in this field for about 25 years and we have had great progress. On the other hand, when I started working on it, I certainly would have hoped that we would have been further ahead by now. So, I have long accepted and I’ve told my wife and children this that optimism is one of my personality flaws. So, I do believe that we will develop some effective anti-epileptogenic therapies before I retire, right? Obviously, that’s only a belief in terms of having very solid therapies.

I do know that the amount of research in this field has skyrocketed over the last several years. This is mainly through the support of the Department of Defense, but also through the CURE Foundation and many others. We now have much better animal models. We have much better understanding of what’s going on at a cellular molecular level. We have much better biomarkers, be the imaging biomarkers or molecular biomarkers. So, I do think we have the tools in place, and we certainly have some strategies that appear to be successful in animal models. Obviously, translating those into humans is not necessarily an easy or even a linear proposition. But I am an optimist, and I think the answer is that we will have something in the next 10 to 15 years or so.