Researchers: CURE Funding Deadline on Friday 9/18 and More

In this month’s update, we want to take a moment to thank you. Your vital work helps give people with epilepsy and their loved ones hope that the answers they need will one day be discovered. In the spirit of hope and scientific advancement, I invite you to join us on September 24 as we bring clinicians, people with epilepsy, and families together for Unite to CURE Epilepsy, a virtual fundraising event.

This inspirational evening will be live streamed on Facebook Live and YouTube Live starting at 7PM CT. Please join us as we highlight research innovation, showcase community stories, and feature wonderful guests, like Emmy-Award Winning CNN Chief Medical Correspondent Dr. Sanjay Gupta!

In the meantime, read on to find information about:

 

CURE Epilepsy Research Continuity Fund Deadline September 18

Learn More

The CURE Epilepsy Research Continuity Fund will provide reimbursements of up to $15,000 for research related expenses resulting from institutional shutdowns during the COVID-19 pandemic and for which institutional support was not available or provided. This award is available to both early-career and established investigators.

The application deadline is Friday, September 18, 2020 at 9:00PM ET. You can find the full Request for Applications on the CURE website here. Current and former CURE grantees will be given special consideration.

Virtual Seminar Series from CURE and Beyond

As part of our commitment to supporting the research community through these challenging times, we are launching a virtual seminar series. Mark your calendars!

In addition, Drs. Robert Hunt and Momoko Watanabe of UCI are hosting a seminar series featuring early-career investigators. You can find more information about the topics they will cover here.

Epilepsy Research Benchmarks: Ideas and Feedback Needed

Give Your Thoughts

Every seven years stakeholders from across the world of epilepsy come together to review and adjust the Epilepsy Research Benchmarks, which inform our collective research priorities. Right now, NINDS is seeking input from clinicians, patients, and families alike on research priorities to address gaps and add additional nuance to these benchmarks. Help pave the way for the next five to seven years of epilepsy science. Leave your comments today.

Deadline to Apply to the NINDS Applicant Assistance Program (AAP) September 24, 2020

Apply

This program helps small businesses apply for Phase I Small Business Innovation Research (SBIR) or Small Business Technology Transfer (STTR) funding. AAP provides participants with services such as application needs assessment, mentoring, application preparation support, and application review. If you are interested, apply by Thursday, September 24, 2020 on the AAP Application Portal.

CURE Update: Let’s Unite to CURE Epilepsy

Greetings CURE community,

Beth Lewin DeanUnite to CURE Epilepsy, our inaugural virtual fundraising event, is only a few short weeks away! I hope you’ll join us on Thursday, September 24 at 7PM CT for this inspirational evening showcasing tenacity, discovery, and hope as we raise critically needed funds to support epilepsy research.

Unite to CURE Epilepsy will be hosted by award-winning journalist and MSNBC’s Morning Joe contributor Mike Barnicle and feature Dr. Sanjay Gupta, Eric Church, and Nils Lofgren. Tune in on Facebook Live and YouTube Live for wonderful performances, research insights, and moving community stories.

Plus leading up to the event, we will highlight  the impacts of epilepsy research with a daily featured topic during CURE Week! Read on for more details.

In addition to these exciting events, in this update please find:

Discover Impacts of Research during CURE Week

Learn More

Discover fascinating research projects and learn how they have the potential to change lives during CURE Week. From September 21-25, visit our Facebook page or YouTube channel daily where we highlight the real-world, positive impacts of epilepsy research. CURE Week will explore a different topic each day; pediatric epilepsy, acquired epilepsy, treatment-resistant epilepsy, SUDEP, and the road to a cure. Join us to see how scientific advancements are making a difference for people around the world.

Webinar and Q&A: Treating Dravet Syndrome with Fenfluramine

Register

Fenfluramine (Fintepla®) is now FDA-approved to treat Dravet syndrome. Tomorrow, September 9 at 12PM CT, leading expert Dr. Joseph Sullivan will dive into the information parents and caregivers should know, including potential side effects. After the presentation, Dr. Sullivan will address questions from the audience.

This webinar was made possible by the generous support of Zogenix.

Female psychologist working with boy who has autism and epilepsy.CURE Discovery: The Connection Between Chronic Stress, Epilepsy, and Autism

Learn More

In a CURE-funded study, Dr. Daniel Barth and his team worked to understand why chronic stress late in pregnancy and the early days of life is a risk factor for both epilepsy and autism. The team tested if stopping brain inflammation caused by stress could prevent or treat both conditions in a rat model of epilepsy and autism. Unexpectedly, they found that the treatment relieved the autistic-like symptoms but had virtually no effect on the development of epilepsy.

CURE Champions Cross the Finish Line Raising $72,000 to Support Research

Become a CURE Champion

This summer CURE Champions raised an amazing $72,000 with socially-distant fitness events! The Ella Mile and ReSearching for a CURE brought people together locally and around the country to support epilepsy research and honor the 1 in 26 Americans who will be diagnosed with epilepsy in their lifetimes.

For the Ella Mile, CURE Champion Shalee Cunneen and CURE Board Member Blake Cunneen decked out their neighborhood with signs sponsored by friends and family spaced 26 feet apart. During ReSearching for a CURE, people from around the country aimed to walk or run 26 miles in six weeks while fundraising along the way.

New from Seizing Life®, a CURE Podcast

Listen or Watch

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

  • Types of seizures and epilepsy, explained in simple terms. Listen or Watch
  • How one organization created a unique housing model for individuals with special needs that aims to foster belonging and empower independence. Listen or Watch

CURE Update: Investing in Research During COVID-19

Greetings CURE community,

Last month, I wrote to you about the serious challenges facing the epilepsy research community as a result of the COVID-19 pandemic. As scientists slowly return to their labs, they are incurring unanticipated costs due to new requirements around personal protective equipment (PPE) and sanitation, supplies and materials that are no longer usable, and supplemental salaries for staff. These unexpected costs are jeopardizing the completion of currently funded epilepsy research.

To support the dedicated scientists whose research is most vulnerable, CURE is launching the Epilepsy Research Continuity Fund (ERCF), made possible by the generous support of the Cotton Family in memory of Vivian Cotton. The ERCF will make available a total of $350,000 to researchers with active epilepsy studies to help them continue their work during the pandemic.

CURE aims to retain and support researchers who are dedicated to finding cures for epilepsy. While the pandemic has slowed down our world in many ways, epilepsy has not stopped and our research must continue.

In addition to supporting critical research projects, we will continue to support you – our community. In this update, please find:

Get a Move On: ReSearching for a CURE Ends in Two Weeks!

Donate or Register

The ReSearching for a CURE virtual scavenger hunt is still going strong, but our investigators and teams need your help! During this fitness challenge, these science sleuths aim to take a grand total of 26 million steps and raise $26,000 to support CURE’s mission.

You can support our globetrotting investigators by giving to this campaign or by joining the challenge yourself. In honor of the one in 26 Americans who will develop epilepsy in their lifetime, can you help our team reach their goals?

You’re Invited: Unite to CURE Epilepsy

Learn More

We’re bringing the epilepsy community together on Thursday, September 24 at 7PM CT, for Unite to CURE Epilepsy, our inaugural virtual fundraising event supporting cutting-edge epilepsy research! No matter where you are in the world, join us and stand shoulder to shoulder in support of scientific progress and our shared vision of a future without epilepsy.

This special evening, broadcast on Facebook Live and YouTube Live, will feature performances from amazing musical artists, a look at the epilepsy research landscape from leading scientists, and inspirational stories of tenacity, discovery, and hope.

Keep an eye on your inbox! We’re announcing a “chief” musical performer soon…

CURE Discovery: Possible Cause of Memory Issues Associated with Temporal Lobe Epilepsy

Learn More

Temporal lobe epilepsy (TLE) is often accompanied by memory issues. In a CURE-funded study, Dr. Tristan Shuman and his team built novel, cutting-edge tools and set to work studying why memory problems arise. His team studied two areas in the brain critical for memory and learning, examining how they communicate with one another.

Dr. Shuman discovered that disrupting the electrical impulses which send information between these areas of the brain caused spatial memory impairments in mouse models of epilepsy. Understanding how the flow of information through the brain is disturbed when a person has TLE is a step toward creating therapies to target and, in the future, possibly re-establishing these disrupted firing patterns.

New from Seizing Life®, a CURE Podcast

Watch or Listen

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

  • The intersection of race, disability, gender, and healthcare. Listen or Watch
  • How a traumatic brain injury suffered during a training accident changed one Marine’s life. Listen or Watch

CURE Update: Epilepsy Research Needs You

Greetings CURE community,

As the COVID-19 pandemic continues to dominate our lives, CURE is focusing on long-term impacts for epilepsy research. Current CURE Grantees are finding ways to continue their studies, but with severe restrictions on laboratory access, many researchers have had to limit or stop their work. Consequently, research projects will be delayed or may even be terminated altogether.

Reduced funding from institutions and government agencies also threaten the success of projects. Scientists must now not only pay their teams’ salary and manage day-to-day lab costs, but also cover unexpected expenses related to sanitation and employee protection. CURE founder, Susan Axelrod, and I further discuss the impacts of quarantine on the research community in this statement, which we encourage you to read.

The fact is that epilepsy hasn’t stopped, and neither have we. People with epilepsy and their families can’t afford for progress to be slowed or halted. Now more than ever, it is critical for CURE to continue awarding grants to dedicated scientists searching for cures. Your support enables us to fund these innovators and generate real progressPlease make your gift today to ensure a future filled with research-driven discoveries.

In addition to helping us fund future research, here are other ways you can get involved or learn more about our work:

Be well,

Beth Lewin Dean

Beth Lewin Dean, CEO

Virtual Scavenger HuntStay Fit with ReSearching for a CURE: A Virtual Scavenger Hunt

Register

Are you up for a fitness challenge that supports epilepsy research? Sign up to be a part of ReSearching for a CURE: A Virtual Scavenger Hunt! We’re challenging all participating individuals or teams to hit 260,000 steps in four weeks, with a program-wide goal of 26 million steps, in honor of the one in 26 Americans who will develop epilepsy in their lifetimes. Any physical activity is welcome and will earn you steps!

As you digitally travel around the world during this four-week challenge, you will uncover exciting research findings and collect passport stamps. Do you think you can find all six? Assemble your team, register, and get your game face on. ReSearching for a CURE: A Virtual Scavenger Hunt officially starts on July 20.

SurveysSurveys: Epilepsy and Risks during COVID-19

Patient Survey | Caregiver Survey

Researchers at Oxford University are conducting surveys to better understand what risks people with epilepsy are facing, and what support they have to help them live well with the condition, particularly during the COVID-19 pandemic. All the information collected will remain anonymous.

If you are a person with epilepsy or a caregiver, please take 10-20 minutes to fill out the appropriate survey. Your responses help improve the quality of care for people with epilepsy around the world.

CURE GranteesIntroducing Our New CURE Grantees!

Learn More

We are delighted to introduce you to three newly funded CURE researchers, Drs. Detlev Boison, Chris McGraw, and James Gugger! Each researcher has a unique perspective and focus. Dr. Boison has been researching ways to prevent epilepsy for 25 years; Dr. McGraw, is a an epilepsy research fellow at Boston Children’s Hospital studying epilepsy genetics; Dr. Gugger is an epilepsy fellow at the University of Pennsylvania exploring a novel way to assess a person’s risk of developing post-traumatic epilepsy (PTE).

We are thrilled to add these promising projects to the more than 240 grants we’ve awarded in 15 countries to date.

Path to a CureCatching Up with Former CURE Grantee Dr. Gemma Carvill

Learn More

Dr. Gemma Carvill became part of the CURE research family in 2015 when she was awarded a Taking Flight grant. Since then her work has flourished. She is now a leader in epilepsy genetic research and runs a lab at Northwestern University.

Recently, she partnered with Dr. Gaetan Lesca in Italy for another CURE-funded study. Together, they discovered a new genetic cause of severe childhood epilepsy; a mutation of the CUX2 gene. Now her lab is exploring a possible new biomarker for epilepsy, which could make diagnostic testing less invasive, transforming clinical care.

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 balance between independence and safety for young adults with epilepsy. Listen or Watch
  • How PhD student Christin Godale went from doing everything she could to hide her epilepsy to actively advocating and researching for a cure. Listen or Watch

New CURE-Funded Research Projects to Drive Science Forward

We are delighted to announce new CURE grants awarded to three innovative epilepsy researchers, Drs. Detlev Boison, Chris McGraw, and James Gugger! Each researcher has a unique perspective and focus; Dr. Boison has been researching ways to prevent epilepsy for 25 years; Dr. McGraw, is a physician-scientist who is currently an epilepsy research fellow at Boston Children’s Hospital studying epilepsy genetics; Dr. Gugger is an epilepsy fellow at the University of Pennsylvania exploring a novel way to assess a person’s risk of developing post-traumatic epilepsy (PTE). We are honored to support the exciting work of these researchers.

To date, CURE has raised over $70 million dollars and funded more than 240 grants to support our mission of finding a cure for epilepsy. Read on to learn about the newest promising projects we’ve funded with the Catalyst Award, Taking Flight Award, and our partnership with the American Epilepsy Society (AES).

Catalyst Award Grantee
$250,000 for two years

The Catalyst Award supports translational research, where findings from basic research (studies that increase our general knowledge and understanding) are “translated” into the next phase of study to prepare potential new treatments for clinical trials.

Detlev Boison, PhDDetlev Boison, PhD
Rutgers University

For 25 years, Dr. Boison and his team have studied ways to prevent epilepsy. During that time, they have found that some individuals develop epilepsy when a substance in the brain called adenosine (ADO) is reduced.

Dr. Boison’s Catalyst Award project builds on a prior CURE-funded study which demonstrated that in an animal model of acquired epilepsy, ADO levels can be increased with a drug that blocks the enzyme responsible for reducing it, called adenosine kinase (ADK). The team’s goal is to optimize and test this potential epilepsy-preventing drug in the hopes of creating disease-modifying treatment options.

Learn More

Taking Flight Award Grantee
$100,000 for one year

The Taking Flight Award seeks to promote the careers of young epilepsy investigators, allowing them to develop a research focus independent of their mentors.

Chris McGraw MD, PhDChris McGraw MD, PhD
Massachusetts General Hospital

Dr. McGraw is developing a zebra fish model to enable the rapid screening of genes that enhance seizure resistance. This system integrates the latest advances in genetic engineering (Crispr/Cas9 technology) and non-invasive neural activity monitoring. Dr. McGraw predicts that by systematically discovering which genes underlie seizure-resistance in zebra fish, researchers can identify potential targets for the next generation of antiepileptic drugs for people with epilepsy.

Learn More

AES/CURE Training Fellowship for Clinicians
$50,000 for one year, funded 50% by CURE

These research dollars support trainees, fellows, and newly independent investigators working across the spectrum of epilepsy research.

James Gugger, MD, PharmDJames Gugger, MD, PharmD
University of Pennsylvania

Epilepsy can develop following a brain injury such as a stroke, brain infection, or head injury; however, there is currently no way to predict who will develop epilepsy following these insults to the brain. Dr. Gugger’s goal is to address this gap by using a special type of brain scan called diffusion tensor imaging (DTI) to identify changes in the brain that indicate an increased risk of epilepsy following a head injury. By better understanding why some people develop epilepsy after injury and by identifying which individuals are at risk, diagnostic tests may be created to predict epilepsy.

Learn More

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.