The Path to a Cure: An Update on Genetic Research

Dr. Gemma Carvill, a former CURE Grantee who is a leader in epilepsy genetic research, was awarded a Taking Flight Award in 2015, early in her career. This grant aims to encourage young investigators to conduct independent research and blossom in the field of epilepsy. Her intriguing study explored how genetic mutations can cause epilepsy to develop, particularly a group of severe, treatment-resistant childhood epilepsy syndromes called “epileptic encephalopathy”.

Since receiving her CURE grant, Dr. Carvill’s career has certainly “taken flight”. Today, she heads her own lab at Northwestern University in Chicago, IL, where her team continues to focus on understanding the underlying genetic and epigenetic mechanisms of epilepsy.

We had the chance to catch up with Dr. Carvill during a recently aired episode of our Seizing Life® podcast. Watch or Listen to learn more about epilepsy genetics and Dr. Carvill’s exciting research.

Watch Seizing Life

Taking Flight in Epilepsy Research

2018 DiscoveryIn 2018, Dr. Carvill partnered with Dr. Gaetan Lesca of the Lyon University Hospital in creating an international study on epilepsy genetics. Together, they identified a new cause of epilepsyde novo mutations (genetic mutations existing only in affected patients and not in their parents) in the CUX2 gene.1 CUX2 is a protein that activates (turns on) or suppresses (turns off) other genes, and specifically regulates genes involved in establishing connections between nerve cells.

Because of Drs. Carvill and Lesca’s collaboration, this genetic cause of epilepsy can now be targeted for the development of potential therapeutic interventions.

A “Crazy Idea” to Transform Clinical Care

Dr. CarvillDr. Carvill is continuing her important work with the help of a New Innovator Award from the National Institute of Health (NIH). In her own words, this award is granted to researchers with “a completely crazy idea that, if it pans out, could really transform clinical care for patients.” Her lab is examining if cell-free DNA (short fragments of DNA released when a cell dies and bursts open) found in plasma can be used as a biomarker of epilepsy.

A big challenge in diagnosing and treating epilepsy is that we only have one reliable biomarker; structural abnormalities in the brain. While widely used, EEG testing can fail to capture seizure data. Dr. Carvill’s work may lead to a new way to identify when patients have had seizures.

Hear more about this innovative work from Dr. Carvill on this episode of the Seizing Life® podcast and learn more about how discoveries in the lab are translated into improved patient care.

Literature Cited

1Chatron N et al. The epilepsy phenotypic spectrum associated with recurrent CUX2 variant. Ann Neurol 2018; 6

A group of students take a selfie together while they raise their graduation caps.

Meet the 2020 CURE Scholars!

Meet the 2020 CURE Education Enrichment Fund (EEF) Scholarship winners! Our ten scholars will together receive nearly $50,000 to advance their education while working to build a brighter future for those impacted by epilepsy.

From aspiring social workers to budding neuroscientists, these exceptional students aim to become agents of change within the epilepsy community. We can’t wait to see the positive changes they make in the world!

Nathan Bliss is dressed in a white lab coat standing in a research facility.Nathan Bliss
Texas A&M University 

At a young age, Nathan’s older brother, Charles, was diagnosed with autism, a rare genetic disorder, and Lennox-Gastaut syndrome (a severe form of pediatric epilepsy). Seeing the dramatic impact that thousands of seizures have had on Charles spurred Nathan to become interested in medical science. Among his proudest accomplishments are being a 2019 Autism Science Foundation Undergraduate Research Grantee and making Dean’s List three semesters in a row.

Nathan’s ambition is to become a physician and researcher, so he can take the concerns of patients and families from the clinic to the lab. Learn more about Nathan’s story here.

Logan Drew's senior picture, in which he is wearing a suit and bowtie in front of a blue background.Logan Drew
Thomas More University 

When Logan, an avid athlete, developed epilepsy as a teenager, he struggled to accept his diagnosis. Over the next two years, he worked to overcome this challenge, finding support in a hospital psychologist. This journey propelled Logan into volunteer work, and he joined his school’s Sources of Strength group, which supports peers struggling with mental health challenges.

Now, Logan wants to continue helping children and teens who are going through the same process of acceptance he did by working toward his degree in psychology. Learn more about Logan’s story here.

Calista Hall stands in front of a brown background, smiling in a stylish pink top and dark jeans.in aCalista Dawn Hall
Whitworth University 

While Calista is now seizure-free, she struggled to manage absence seizures and bone weakness as a child. But thanks to the excellent care of her supportive medical team at Seattle Children’s Hospital, she found her calling; pediatric medicine. While pursuing her goals to break into this field, Calista is organizing events to give back to her community. These philanthropic accomplishments earned her recognition as both the Lewiston, Idaho Distinguished Young Woman of 2020 and the Idaho Distinguished Young Woman, Be Your Best Self awardee.

When Calista enters college, she will pursue a degree in health sciences, with the aim of becoming a physician’s assistant, so she too can provide the high-quality care kids with epilepsy deserve. Learn more about Calista’s story here.

Kristen Harrison stands in a lovely town square with her arms folded wearing a long-sleeved black shirt.Kristen Harrison
Vanderbilt University 

Kristen was diagnosed with epilepsy in 2006 and has absence seizures daily. For years she has volunteered at summer camps for kids with epilepsy, happy to give back to her community. Unfortunately, due to the stigma people with epilepsy face all too often, achieving her dream of becoming a nurse has not been easy, with instructors doubting her abilities after Kristen had seizures at school.

With tenacity, dedication, and self-advocacy, Kristen not only got into nursing school, but graduated Summa Cum Laude. She is now working toward becoming a nurse practitioner, so she can continue bettering the lives of children with epilepsy. Learn more about Kristen’s story here.

Madison Lee Intemann poses for a picture, sitting in front of concrete stairs and smiling.Madison Lee Intemann
University of Georgia

For Madison, family life often revolves around caring for her younger brother, Brady, who has been diagnosed with a mitochondrial disorder and epilepsy. While helping her parents with her brother, Madison remained active in her church and earned a Girl Scouts Silver Award for service.

Brady’s condition and medical complexity inspired Madison to go into biomedical research. In fact, she has already started her scientific journey by taking Career and Technical Education courses on how to work in a lab. When she becomes a researcher, Madison plans to study neurological conditions and drive science toward cures. Learn more about Madison’s story here.

Gabriella Joseph smiles in front of a white background wearing a blue top.Gabriella Joseph
Columbia University

Gabriella’s experience with epilepsy began at three years of age, but her interest in neurology developed in high school. This interest blossomed into a professional calling. Gabriella has graduated with a bachelor’s degree in neuroscience, managed a genetic study examining somatic tumor tissue, and was named on two projects presented at the 2019 GU ASCO conference on genitourinary cancers.

Now, Gabriella is pursuing a master’s degree in public health to improve healthcare access in the epilepsy community and beyond. Learn more about Gabriella’s story here.

Trevor Phillips wears a salmon colored shirt and leans against a light brown brick wall.Trevor Phillips
Kirkwood Community College

During his junior year of high school, Trevor was diagnosed with both epilepsy and idiopathic hypersomnia, a sleep disorder that makes individuals extremely drowsy during the day. Between the hypersomnia and side effects from antiseizure medication, staying awake can be a challenge for Trevor, let alone attending classes. But this hasn’t held him back! Trevor is an avid volunteer, often giving his time to organizations and programs that feed his local community.

Trevor is in the midst of his coursework to become an electroneurodiagnostic technician, a role in which his perseverance and experiences with epilepsy will help him shine. Learn more about Trevor’s story here.

Madelyn Rose Samuel smiles while in a field of purple flowers.Madelyn Rose Samuel
East Tennessee State University

Madelyn has always been an academic achiever, but when she developed epilepsy school became a challenge. Her seizures changed her brain in such a way that she had to relearn how to learn. After grappling with accepting her diagnosis and her “new brain”, Madelyn became a vocal advocate for others with epilepsy. Among her many accomplishments, she worked with the Chelsea Hutchison Foundation to provide patients with seizure dogs and lifesaving seizure monitors to warn against Sudden Unexpected Death in Epilepsy (SUDEP).

Madelyn plans to continue helping those impacted by the effects of epilepsy by pursuing a rehabilitative health sciences degree with a neurology/neuroplasticity focus. Learn more about Madelyn’s story here.

Maria stands in the sunshine wearing a nice black jacket over a black shirt.Maria E. Sheridan
Vanderbilt University 

Maria is an exceptional swimmer who made the Olympic Trials in 2012. But her seizures have always been along for the ride. Maria’s epilepsy hasn’t slowed her down, though. In addition to her athletic accomplishments, Maria is proud of her academic achievements, including studying sociology, global health, and markets and management at Duke University and being admitted into the .

Having experienced the financial burden epilepsy treatment places on families and patients, Maria is on the path to obtaining her master’s degree in public health to address these needs. Learn more about Maria’s story here.

Lindsay Rose Sledge
Western New Mexico University

Lindsay has been a vocal advocate within the epilepsy community in New Mexico through her policy work. Two of her three children are impacted by epilepsy; one acquired it after being hit by a car and the other was diagnosed with Dravet syndrome as a child. eases one of her daughter’s seizures, however her school would not allow her to use that medication in the building. Because of Lindsay’s legislative work, students who need medical cannabis now have the right to their medicine at school.

Now, Lindsay is pursuing her master’s degree in social work, so that she can continue affecting change while caring for the needs of individuals and families dealing with epilepsy. Learn more about Lindsay’s story here.

Thank you to our Partner

The 2020 Education Enrichment Fund Scholarships are made possible by the generous support of Greenwich Biosciences.

Greenwich Biosciences Logo

 

Researcher Update: June 2020

In this month’s researcher update you will find information on:

Catalyst Award LOIs Monday, July 6

Request for Proposals (PDF)

The deadline is approaching to apply for CURE’s newest grant mechanism, the Catalyst Award. This award (2 years / $250,000) aims to stimulate and accelerate the discovery and development of new therapies for epilepsy, moving promising, well-supported preclinical and/or clinical research closer to clinical application.

  • Open call for Letters of Intent: Monday, June 1, 2020
  • Letter of Intent deadline: Monday, July 6, 2020, 9 PM ET
  • Full proposal invitations: Thursday, August 13, 2020
  • Full proposal deadline: Thursday, September 17, 2020, 9 PM ET
  • Awardee notification: Late-December 2020
  • Anticipated award start date: March 2021

Epilepsy & COVID-19 Survey for Healthcare Providers

Take Survey

SUDEP Action and the Oxford Epilepsy Research Group are collaborating to better understand what risks people with epilepsy and healthcare providers are facing, what support they have and how to help them live well with the condition. Particularly during the current COVID-19 pandemic, it is important to explore the changes and challenges healthcare providers and patients are facing so they can be better supported.

NINDS Career Opportunities

NINDS has positions available for Health Scientist Administrators in the Epilepsy Therapy Screening Program and the Preclinical Screening Platform for Pain. Please don’t hesitate to send this update along to anyone you think may be interested in applying!

Submit an Abstract to the PAME Conference by June 29!

Submit Abstract

The PAME Conference, which is happening December 3-4 in conjunction with AES, has extended the deadline to submit abstracts to June 29. This conference aims to improve our understanding of mortality in epilepsy, including Sudden Unexpected Death in Epilepsy (SUDEP), by bringing together health care providers, researchers, public health officials, patient advocates, caregivers, bereaved families, and patients living with epilepsy. Abstracts should be submitted through the AES portal.

NIH Request for Information: Developing an Online Educational Resource for Training in the Principles of Rigorous Research

Submit Comment

NINDS is requesting your input to better provide accessible education on the principles of rigorous biomedical research for members of the scientific community. In particular, NINDS encourages experts in training, rigorous experimental design and implementation, mentoring, education, and technology to contribute their input.

AES Offering CE and CME Credit for 2019 Sessions

View Sessions

AES is now offering CE and CME credit for 2019 AES recorded sessions. The goal of these online materials is to provide knowledge and training for professionals working the epilepsy field and provide clinicians with resources to help improve the care of those with epilepsy.

A woman is having a discussion via video chat with her doctor.

CURE Update: Support During Difficult Times

Greetings, CURE community. Epilepsy can occur in anyone. Any age, any race, any color, any gender. However, research has demonstrated that too often communities and people of color face major hurdles when it comes to epilepsy diagnosis, treatment, and healthcare access.

Throughout the world, individuals, governments, and organizations are having long over-due, difficult conversations about systemic racism, including those found in healthcare. This gap runs counter to our mission and needs to change. The National Institutes of Health (NIH) is actively conducting a study to understand these gaps; please consider participating now through June 15.

At CURE we believe a world free of epilepsy, as well as racism, hate, and systemic inequality is possible. And to build that world, we must reaffirm that black lives matter. Our vision is simple: a world without epilepsy. For everyone. Period. We promise this: if even one person is still living with the debilitating effects of epilepsy, we will continue to push science forward.

We remain committed to providing resources, opportunities, and educational content for you, our community. In this update, please find:

Be well,

Beth Lewin Dean

Beth Lewin Dean, CEO

Telehealth TipsHow to Make the Most of Telehealth Visits

Download Guide

While “telemedicine” has been around for years, the arrival of COVID-19 has increased use of this service within healthcare practices. With the CDC recommending that people minimize physical contact and proximity with others, telemedicine – also referred to as “telehealth” – has become a valuable tool for seeking non-emergency medical treatment.

In our guide, please find helpful tips on how you can prepare for telehealth visits with your doctors.

Upcoming EventsStay Active while Social Distancing with These Upcoming Events!

Looking for a way to stay active and get involved with CURE while social distancing? Then you won’t want to miss out on our virtual scavenger hunt! Keep an eye on your inbox and social media. An announcement is coming soon…

Plus, warm up for the big scavenger hunt with CURE Champion Megan Cullen’s virtual 5K run/walk, Go the Distance for CURERegister here.

The Catalyst AwardIntroducing the Catalyst Award, a New Avenue to Fund Research

For more than 20 years we’ve been on an unrelenting search for a cure. We have funded more than 240 grants in 15 countries to better understand the causes of epilepsy, uncover new therapies, and cure epilepsy once and for all. Now it is time to take those research findings one step further.

We are thrilled to expand our current research approach with the CURE Catalyst award. This grant funds translational research, where findings from basic research studies are “translated” into the next phase of research to prepare potential new treatments for clinical trials.

The Catalyst AwardCURE Discovery: Inhibiting This Brain Enzyme May Prevent Epilepsy

Learn More

In his CURE-funded research, Dr. Detlev Boison and his team found that inhibiting a particular enzyme in the brains of mice following injury protects them from developing epilepsy. Dr. Boison’s groundbreaking research supports the development of improved, more selective compounds which can one day be tested in clinical trials and, hopefully, approved for clinical use.

Seizing LifeNew from Seizing Life®, a CURE Podcast

Listen or Watch

Catch up on the latest episodes of the Seizing Life podcast where we discuss:

  • How Seizure Tracker empowers the epilepsy community and supports research. Listen or Watch
  • The strong link between epilepsy and mood disorders and how parents and individuals with epilepsy alike can improve their mental health. Listen or Watch

For Researchers: New CURE Grant, Infantile Spasms Treatment Guidelines, and NIH Request for Information

While the COVID-19 pandemic continues to create challenges for the scientific and patient communities, we are glad to be able to share good news: we’ve launched a new grant mechanism, the Catalyst Award! We will open our call for proposals on Monday, June 1, 2020.

Below, you can find details about this new grant opportunity, as well as an important statement from the Child Neurology Society on managing infantile spasms during the pandemic and a request for information from NIH on healthcare disparities and inequalities.

New CURE Grant: The Catalyst Award

Request for Proposals (PDF)

The Catalyst Award (2 years / $250,000) aims to stimulate and accelerate the discovery and development of new therapies for epilepsy, moving promising, well-supported preclinical and/or clinical research closer to clinical application.

Grant Timeline

  • Open call for Letters of Intent: Monday, June 1, 2020
  • Letter of Intent deadline: Monday, July 6, 2020, 9 PM ET
  • Full proposal invitations: Thursday, August 13, 2020
  • Full proposal deadline: Thursday, September 17, 2020, 9 PM ET
  • Awardee notification: Late-December 2020
  • Anticipated award start date: March 2021

Child Neurology Society Statement on Managing Infantile Spasms during the COVID-19 Pandemic

View Statement (PDF)

While clinicians are limiting in-person healthcare visits in response to the COVID-19 pandemic, timely diagnosis and management of new onset of infantile spasms is critically important for child neurologists. The Child Neurology Society has created guidance to assist with clinical decision making regarding infantile spasms during this public health crisis.

NIH Request for Information: Health Disparities and Inequities in Neurological Disease and/or Care in the United States

Submit Comment

To address healthcare disparities and inequities among people with neurological conditions, NIH is seeking input from scientists, clinicians, patients, families, caregivers, advocates, and the broader community on the most important knowledge gaps, health and research needs, and promising opportunities to address this issue. NIH aims to use this information to help guide NINDS research on health disparities and inequities in neurological diseases and disorders.

A woman is having a discussion via video chat with her doctor.

CURE Update: Epilepsy & COVID-19 Resource Hub Now Live

Greetings, CURE community! The COVID-19 pandemic and our knowledge of the coronavirus continue to evolve. As more information hits headlines, we wanted to give you a way to stay up to date on how this situation is impacting the epilepsy community while providing helpful resources. On our new COVID-19 resource hub, you can find our guide on preparing for and getting the most out of virtual doctor visits, frequently asked questions, helpful podcast episodes, and more.

We will continue to monitor the impacts of COVID-19 but know that we remain laser-focused on finding a cure for epilepsy. We are in this for the long haul, and we are only able to continue this work because of the generosity of you, our supporters. Our funded research projects remain active, and we look forward to awarding new grants in the coming months. For a full update on the status of CURE’s research, please click here.

Below, please find additional resources and opportunities to support epilepsy research through participation, awareness, and education:

Be well,

Beth Lewin Dean

Beth Lewin Dean, CEO

Webinar: Learning Healthcare SystemsWebinar: Transforming Data into Seizure Control with Learning Healthcare Systems

Register

Doctors, researchers, patients, and families are collaborating to create a pediatric “learning healthcare system” in order to improve outcomes in children with epilepsy. In our webinar on Thursday, May 14 at 12:00PM CT, discover how this comprehensive, data-driven approach could lead to better guidelines, more consistent treatment, and increased seizure freedom for children.

Our Leaders in Epilepsy Research Webinar Series is made possible by the generous support of the BAND Foundation.

New 2020 Tax BenefitsDonate Now: Increased Tax Benefits in 2020

Learn More

The Coronavirus Aid Relief and Security Act (CARES Act) recently passed by Congress includes a new universal tax deduction for qualified charitable contributions in 2020. Individuals and corporations may now receive increased tax benefits when they support nonprofit organizations such as CURE, even if they claim the standard tax deduction. Your donations advance our mission and support the research we fund, and now your contribution may also lower your taxes. Please consider taking advantage of this win-win!

CURE DiscoveryCURE Discovery: “Big Data” Approach Identifies Protein that Protects Against Epileptogenesis

Learn More

Dr. Avtar Roopra and his team used a “big data” approach to understand how epilepsy develops following an initial “insult” to the brain. To do so, the team analyzed an astronomical amount of data to identify a protein called EZH2, which determines when thousands of genes are “turned on” or “turned off”. These findings suggest that this protein may protect the brain from seizures and epilepsy.

Seizing LifeNew from Seizing Life®, a CURE Podcast

Listen or Watch

Catch up on the latest episodes of the Seizing Life podcast where we discuss:

  • The role of NINDS in epilepsy research.
    Listen or Watch
  • How one family is managing medically complex healthcare during the COVID-19 pandemic.
    Listen or Watch
  • How comprehensive epilepsy care and public education has started to make a difference for the epilepsy community.
    Listen or Watch

NINDS SurveyNational Institute of Health (NIH) Survey on Healthcare Disparities – Participate Now

Take Survey

To address healthcare disparities and inequities among people with neurological conditions, NIH needs input from patients, caregivers, and family members like you! NIH hopes to use your input and perspective to close the gaps in neurological care, outcomes, treatment, access and provision of services, and research.

A blonde woman in a lab coat is conducting genetic research in the lab.

CURE Discovery: Researchers use “Big Data” to Identify a Protein that Protects Against Epileptogenesis

Key Points

46b3b1fc-3392-497c-aece-1912e9be9f6b.png

  • Dr. Avtar Roopra and his team used a “big data” approach to understand how an injured brain may develop epilepsy. To do so, the team analyzed a vast amount of data to identify a protein called EZH2, which determines when thousands of genes are “turned on” or “turned off.”
  • The research team found that inhibiting EZH2 activity increased the frequency and severity of seizures in rodent models of acquired epilepsy, suggesting that EZH2 protects against the development of seizures and may be a potential new therapeutic target.
  • Because of this CURE-funded work, Dr. Roopra was able to secure a grant from the National Institutes of Health (NIH) to continue his promising study on EZH2.

Deep Dive

There are many antiepileptic drugs (AEDs) commercially available, but they only treat the seizures rather than cure or even prevent epilepsy. To develop curative or preventative AEDs, researchers must first understand the biological mechanisms underlying epileptogenesis, the process by which an initial “insult” to the brain, such as a head injury or even a period of recurrent seizures, leads to epilepsy.1 A particularly critical stage of epileptogenesis is called the latent period, a poorly understood span of time between the initial insult and the onset of epilepsy.1 Dr. Roopra’s CURE-funded project set out to better understand what happens in the brain during this period.2

Key Terms DefinedThe researchers turned to a potentially powerful method, which involves identifying possible proteins, known as transcription factors, that activate (“turn on”) or suppress (“turn off”) specific genes. Some transcription factors control thousands of genes and are therefore known as “master” regulators. Unfortunately, finding these master regulators can be a challenging task given the large quantity of genomic data to analyze.

Dr. Roopra’s work overcame these challenges through a collaboration with Dr. Raymond Dingledine’s team at Emory University. They collected data from numerous laboratories and worked together to construct a large database of detailed gene expression profiles3 of brain cells from different rat models of acquired epilepsy, collected at multiple time points during the latent period.4 Dr. Roopra’s team then developed a high-powered computer algorithm5 to identify potential master regulators from this database.

Gene Expression ProfileUsing these tools, Dr. Roopra and his team uncovered evidence for increased levels of EZH2 in these samples.2 In addition, when the team inhibited EZH2 activity in rodent models of acquired epilepsy, the frequency and severity of daily seizures increased significantly, suggesting that EZH2 serves to dampen seizure activity during the latent period. 2

This discovery could lead to the development of novel treatments that could potentially cure or even prevent epilepsy rather than offer only symptomatic treatment of the seizures.

Since completing his CURE-funded grant, Dr. Roopra and his co-investigators have parlayed their initial results to obtain a much larger grant from the NIH to further explore the role of EZH2 in the generation of epilepsy. CURE is proud to have played a part in propelling Dr. Roopra’s groundbreaking work to the next stage. Such success highlights the importance of funding innovative ideas that one day will lead to developing treatments with “no seizures, no side effects” for every person with epilepsy.

Literature Cited

1Lukawski, K. et al. Mechanisms of epileptogenesis and preclinical approach to antiepileptogenic therapies. Pharmacol. Rep. 2018; 70(2): 284-293.
2 Khan, N. et al. A systems approach identifies Enhancer of Zeste Homolog 2 (EZH2) as a protective factor in epilepsy. PLoS One 2019; 14(12): e0226733.
3 Casamassimi, A. et al. Transcriptome profiling in human diseases: new advances and perspectives. Int. J. Mol. Sci. 2017; 18(8): 1652.
4 Dingledine. R. et al. Transcriptional profile of hippocampal dentate granule cells in four rat epilepsy models. Sci. Data 2017; 4: 170061
5 Roopra, A. MAGIC: A tool for predicting transcription factors and cofactors driving gene sets using ENCODE data. PLoS Comput. Biol. 2020; 16(4): e1007800.


Your support makes this research possible. Our researchers’ important work continues through the current public health crisis and beyond, thanks to generous donors who, like us, envision a world without epilepsy.

An Update on the Status of Epilepsy Research at CURE

The coronavirus pandemic has been the central force driving all aspects of life since March of this year.  It has changed how we live, how we work, how we interact socially, and how we view the future. As the CEO of CURE, COVID-19 permeates everything thing that I do. From thinking about the safety of my team to the funding of our research grants to the planning of our annual benefit, I am constantly asking myself how do we continue to move forward, because although most aspects of our daily life have stopped amid COVID-19, epilepsy has not.

As the prevalence of coronavirus increased in the US and stay-at-home orders came into force, one of the first things that the CURE team did was reach out to the  grantees that we have currently working on CURE-funded research grants. As the parent of a college-aged student, I knew all too well that most colleges and universities were closing their campuses and access to their facilities. We learned broadly that many research activities at academic institutions have been put on hold or shut down altogether. Fortunately, after speaking with our grantees, we were able to confirm all were able to get permission for access to their laboratories or were able to redirect their work to focus on data analysis so that they could continue their research activities. To-date, none of them have had to abandon their studies.

While this is fantastic news, it does not mean that the pandemic will not have an impact on our research portfolio. For the research underway, there will likely be delays in completion of the work. The delays may range from weeks to months. We are living in unprecedented times with no crystal ball to tell us what the next week, month or year will hold, so we will continue an open and frequent dialogue with our researchers and provide them support where we can.

The pandemic will also have implications upon our future research. We are moving ahead with our planned 2020 research grants. In March the CURE Board of Directors supported funding additional grants, and we continue forward with our current grant cycles focused on our Taking Flight at CURE Epilepsy grants that will be awarded mid-year. We plan on awarding an additional round of grants at the end of 2020. Epilepsy has not stopped, so our research must continue. However, once the grants are awarded, we will have to work with the researchers and their institutions to determine when they will be able to initiate their work and how COVID-19 restrictions will impact their timelines. And very soon, we will need to forecast how the economic environment is impacting our donation revenue so that we can determine the amount of research funding we can support in 2021.

There is still much uncertainty in the environment, but the CURE team is focusing on what we know. Epilepsy is unrelenting, and so are we. We will continue to accelerate research and drive knowledge forward by funding cutting-edge science that will lead us to a CURE. We are grateful for both your past and your future support of our research, especially in these challenging times.

Be well,

Beth Lewin Dean
CEO

A little girl dressed in a white lab coat holding a beaker of cool green liquid.

CURE Update: Activities for Social Distancing

Greetings, CURE community! There is one question on our minds right now: how are you? While we are closely monitoring the COVID-19 pandemic, we want to hear from you about how you’re passing the time, your concerns about epilepsy management, or what information you need. Reach out to our CEO Beth Lewin Dean at CEO@cureepilepsy.org.

Please know that CURE is here, continuing to fight to cure epilepsy and providing news and resources. In this update, find resources and ways that you can get involved while maintaining CDC-recommended social distancing:

COVID-19 and Epilepsy Facebook Live Stream

COVID-19 Facebook Live StreamWatch and Share

On March 18, three experts answered audience question about COVID-19 and epilepsy on Facebook Live. During this live stream, pediatric epileptologist Dr. Douglas Nordli from UChicago Medicine along with neurologist Dr. Jeffrey Loeb and neuroimmunologist Dr. Michael Carrithers, both from the University of Illinois at Chicago, provided their expert insights.

Stay tuned: We will continue to host live online discussions as the situation develops.

Scholarship Deadline: April 15

CURE Scholarship DeadlineLearn More

The deadline to apply for an Education Enrichment Fund (EEF) scholarship of up to $5,000 is April 15. If you or a loved one are impacted by epilepsy and committed to becoming an agent of change in the epilepsy community, we encourage you to apply!

EEF scholarships support coursework in scholars’ chosen career paths, so they can use their knowledge and skills to affect positive change within the epilepsy community. Check our website for full eligibility and application details.

EEF scholarships are made possible by the generous support of Greenwich Biosciences.

Webinar and Live Q&A: The Epilepsy-Autism Connection

Epilepsy and Autism WebinarRegister

Join us for a webinar exploring the link between epilepsy and autism Tuesday, April 28 at 12:00PM CT. Dr. Jamie Capal will dive into leading theories on why these conditions are so frequently connected, discuss common seizure types, and explore how to identify seizures in children and the next steps to take.

Our Leaders in Epilepsy Research Webinar Series is made possible by the generous support of the BAND Foundation.

#CUREkids: Build Your Epilepsy Research Lab!

Mary Fox's Granddaughter, YasyaDownload Coloring Page

The world needs junior investigators to help find a cure for epilepsy…and the #CUREkids are perfect for the job! Have your little one draw, paint, or build their epilepsy research laboratory. Snap a picture to show the CURE Community using #CUREkids on Instagram and Twitter!

CURE Champion Spotlight: Mary Fox Goes the Distance

Mary Fox's Granddaughter, YasyaLearn More

For her 75th birthday, CURE Champion Mary Fox and her friends and family walked, skipped, and swam to support epilepsy research during Move for Yasya! This virtual marathon was a special fundraiser honoring Mary’s granddaughter, Yasya, who has battled epilepsy for two years.

Mary had an ambitious fundraising goal – $1,945 in honor of her birth year. In just one month, this innovative virtual event raised 120% of the goal in support of CURE’s mission to fund ground-breaking epilepsy research!

New from Seizing Life®, a CURE Podcast

Seizing LifeListen or Watch

Catch up on the latest episodes of the Seizing Life podcast where we discuss:

  • How genetic research is directly benefiting epilepsy treatment. Listen or Watch
  • The ways EEGs are used to diagnose, treat, and research epilepsy. Listen or Watch
A digital rendering of the novel coronavirus

Fighting for an epilepsy cure isn’t going anywhere…

As part of the CURE family, we want to let you know that we are here for you. We are closely monitoring the COVID-19 pandemic in the US and beyond to ensure that we are not only protecting our staff but also providing you and the epilepsy community with helpful information and resources. We encourage you to keep a close eye on our Facebook and Twitter accounts for updates, lives streams, and the epilepsy research news we are committed to providing. Plus, we have some wonderful educational and fun content coming soon!

CURE actions:

  • Our staff is not traveling and is working remotely, but we’re still here for you. Please don’t hesitate to reach out to us via email, phone, or social media.
  • We are hosting remote live streams via Facebook about COVID-19 and the implications for the epilepsy community.
  • All in-person CURE events have been cancelled or postponed through the end of May, though we are in the process of developing great ways to engage online!
  • Our webinar series will continue on April 28 with a presentation and live Q&A on The Autism-Epilepsy Connection.
  • Affected CURE-sponsored seminars and conferences for researchers and families alike are being rescheduled for later dates or moved to virtual conferences.

Ways that you can continue the fight for a cure:

Please take a moment and reply to this email to let us know what information you need and who you’d like to hear from. Reach out to us any time! We are always here for you, continuing to fight for a cure.

Be well,

Beth Lewin Dean

Beth Lewin Dean, CEO