News Topics: Event

CURE Epilepsy Update May 2023

Greetings Epilepsy Community,

I am so excited to share that this past weekend, thanks to our generous donors and sponsors, CURE Epilepsy raised $3.1 million for epilepsy research at our 25th Anniversary Gala in Chicago. It was wonderful to share an evening with our community of people living with epilepsy, family members and friends, researchers, past and present board members and other volunteers and supporters who have helped to shape CURE Epilepsy over the last 25 years. We also toasted our founder Susan Axelrod, without whom none of our progress would be possible, and awarded our inaugural Founders Award to our first research chair Barb Kelly.

Though we still have a long way to go, epilepsy diagnostics, treatments, and therapies have come incredibly far in the past 25 years, giving hope to so many who were previously left with extremely limited options. Our search is unrelenting, and we remain committed to funding the most innovative science until we reach a world without seizures or side effects. The epilepsy journey can be lonely and isolating, and, especially during this Mental Health Awareness month, the value of this community and the support we give each other cannot be overstated.

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

$3.1 Million Raised for Epilepsy Research at CURE Epilepsy’s 25th Anniversary Gala

Thanks to the generous and committed members of our CURE Epilepsy community, we raised $3.1 million for epilepsy research at our 25th Anniversary Gala in Chicago last weekend. It was an incredible evening celebrating inspiring stories from the community and promising advancements in research. Thank you again to our Host Committee, sponsors, donors, and volunteers. If you would still like to make a gift to help find a cure for epilepsy, you can visit the event page.

 

 

Donate Today

May is Mental Health Awareness Month

May is Mental Health Awareness Month, an opportunity for the epilepsy community to raise awareness and challenge stigma about mental health concerns specific to people with epilepsy.

Epilepsy is not a mental health disorder. However, one-third of people with epilepsy have a psychiatric disorder as well. While some may experience few mental health issues, others experience debilitating anxiety, depression, or mood disorders. This is why it is important for the epilepsy community to continue to raise awareness about both epilepsy and mental health.

 

 

Explore Mental Health Awareness Resources

Register for Our Webinar: Mental Health and Childhood Epilepsy

Join us for our webinar on Thursday, May 18 at 1 pm CT that will explore the complexities of childhood epilepsy and mental health. Mental health and behavioral problems are just a few of the concerns that can affect children with epilepsy, and these can vary greatly from one child to the next. The speaker for this webinar is Dr. Clemente Vega, a board-certified clinical neuropsychologist and a certified subspecialist in pediatric neuropsychology. He is employed in the Epilepsy Center at Boston Children’s Hospital, with clinical and academic efforts that focus on pediatric epilepsy syndromes, neurosurgical outcomes, and cross-cultural application of neuropsychological assessment.

 

 

Register

New Resource for the Community: Medication Access

The health insurance and prescription benefit ecosystem in the United States is incredibly complex. It can be difficult to understand and navigate how prescription drugs get from the manufacturer to the pharmacy and what determines whether or not your insurance will cover the cost. And yet, access to medications prescribed by your physician is important to both control seizures and ensure the best possible outcome for your health.

This is why CURE Epilepsy has created an online Medication Access resource. This resource will provide you with a high-level description of the prescription process so that you can better understand the various players and how to overcome obstacles to obtaining your medicine.

 

Explore the New Medication Access Resource

Join Team CURE Epilepsy for the Marine Corps Marathon (MCM)

Join us on October 29 in Washington DC for the 2023 Marine Corps Marathon (MCM). CURE Epilepsy is proud to be a new partner of this annual marathon. You can join fellow Team CURE Epilepsy runners in our nation’s capital as we raise critical funds and awareness in our efforts to find a cure for epilepsy, by promoting and funding patient-focused research.

 

 

 

Register

Watch Our Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission

 

If you missed our latest Treatment Talk you can now access the recording. This Treatment Talk discusses focal epilepsy and the most recent treatments to help patients achieve medical remission. The talk features Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago, and Sarah Carlson, a patient of Dr. Smith’s who battled epilepsy and its corresponding stigma for many years before achieving seizure freedom. Viewers will learn about focal epilepsy, how a new medication called cenobamate can offer patients the hope of medical remission, and the benefits and risks identified in recent clinical trials of cenobamate.

 

Watch

CURE Epilepsy Discovery: CURE Epilepsy Funds Research to Investigate Mechanisms of Genetic Epilepsies

 

In this CURE Epilepsy Discovery, we highlight the efforts of our Epilepsy Genetics Initiative (EGI), which created a centralized database to store and analyze genetic signatures associated with epilepsy. We also summarize EGI’s impact on people living with genetic epilepsies and the epilepsy research community. We then feature three recent CURE Epilepsy grant awardees who have contributed to numerous aspects of genetic epilepsies ranging from the development and application of new technology to studying specific genes and their contributions to epilepsy, to exploring the epigenomic pattern associated with epilepsy.

 

Read Discovery

 

What’s New from the Seizing Life® Podcast

Teen Tennis Player Remains on Court Despite Seizures and Stigma

 

Hear Reid’s story of a sudden onset of epilepsy that he experienced as a freshman in high school, his journey to controlling his tonic-clonic seizures, and how epilepsy and stigma have impacted his education and tennis career as one of the top young players in Oklahoma.

Watch or Listen

 

 

From LGS to Surgery to Just Being a Kid: A Mother Shares Her Son’s Epilepsy Journey

 

Mother and epilepsy advocate, Collen Jendreas, joins us to share her young son Owen’s epilepsy journey from initial onset to a diagnosis of Lennox-Gastaut syndrome (LGS), and discuss how two particular interventions have made a significant impact on Owen’s quality of life.

 

 

Watch or Listen

Watch these and all of our upcoming Seizing Life episodes here.

The CURE Epilepsy Store

 

Need apparel or accessories to spread epilepsy awareness and help support funding research to find a cure? Check out the CURE Epilepsy Store.

Shop

 

 

 

Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Marc’s Story

 

Researcher Update: April 2023

In this Researcher Update you’ll find information on:

CURE Epilepsy’s Frontiers in Research Seminar Series

The goal of CURE Epilepsy’s Frontiers in Research Seminar Series program is to expose researchers, clinicians, and students to exciting epilepsy research and provide opportunities for young investigators to interact with leaders in the field. CURE Epilepsy will provide $2,500 to each of the selected institutions to offset the costs associated with hosting a seminar. Apply for CURE Epilepsy’s Frontiers in Research Seminar Series by Wednesday, May 31, 2023.

Learn More

Partners Against Mortality in Epilepsy (PAME) Call for Abstracts

The 7th Partners Against Mortality in Epilepsy (PAME) Conference will be held on Thursday, November 30, 2023, in Orlando, FL. This conference brings together healthcare providers, researchers, public health officials, patient advocates, caregivers, bereaved families, and people living with epilepsy to discuss topics related to mortality in epilepsy. Abstracts will be considered from all investigators doing epidemiological, basic, translational, or clinical research on any aspect of mortality in epilepsy. All accepted abstracts will be presented as posters at the PAME meeting.

Learn More

A Free PAME Webinar: Sudden Death in Epilepsy (SUDEP): Common Misconceptions

Misunderstandings about SUDEP impact how providers discuss SUDEP risk, how researchers track and investigate the problem, how we think about prevention, and much more. Dr. Orrin Devinsky, a leader in SUDEP research, will challenge our thinking and help identify misunderstandings so we can more effectively study and prevent SUDEP. This one-hour webinar, to be held on Friday, April 28 at 1PM CT, is geared toward healthcare providers, researchers, people with epilepsy, and other interested parties.

Register

NIH Free, Virtual Conference: Ableism in Medicine and Clinical Research

The National Center for Medical Rehabilitation Research (NCMRR) is holding a free, virtual conference on Ableism in Medicine and Clinical Research on April 27-28. This 2-day, virtual workshop focuses on awareness and research opportunities to mitigate the effect of “ableism”—defined by the American Psychological Association as prejudice and discrimination aimed at people with disabilities—in both clinical care and the biomedical and behavioral research enterprise.

Learn More

CURE Epilepsy Update April 2023

Greetings Epilepsy Community,

I am excited to announce the 2022 research grantees for our Catalyst, Rare Epilepsy Partnership, and CURE Epilepsy awards in this month’s CURE Epilepsy Update. The selection of cutting-edge research projects is one of the most important charges of our organization. We are proud to announce seven additional grants, which support many areas of epilepsy research, from the natural history and genetics of rare SCN8A-related disorders to translational research on a drug that can treat refractory neonatal seizures. The three Catalyst, three Rare Epilepsy Partnership, and one additional CURE Epilepsy Award total $1.3 million in funding and bring our total funding to almost $2.5 million in the past 12 months.

Five of our latest grants are generously funded by an anonymous donor who is inspired by the life of Robert Withrow Wier, who was an ambitious community leader with an innovative mind and a generous heart. This philanthropy has been particularly instrumental in two of our newest grant mechanisms, the Catalyst and Rare Epilepsy Partnership awards. The Robert Withrow Wier Fund jumpstarted the first Catalyst Award in 2020 and, through a unique matching gift challenge, inspired both additional large and small gifts to propel this program forward. Additionally, the CURE Epilepsy contributions of all three 2022 inaugural Rare Epilepsy Partnership Awards, which allow for accelerated progress on research priorities in collaboration with smaller nonprofits focused on rare epilepsies, are sponsored by the Fund.

Learn more about our new grantees here and stay tuned for updates on research progress going forward.

CURE Epilepsy (and epilepsy research) wouldn’t be where it is today if it wasn’t for our donors who have helped to fund these critical grants. We are also indebted to all of our amazing volunteers who give their time and talents to help support our mission. In advance of Volunteer Appreciation Week this month, let me personally thank everyone in the community who has helped us during the past year. It takes a village to come together to help propel epilepsy research forward the way that we have, and I am grateful to each and every one of you!

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Tickets Available for Our 25th Anniversary Gala in Chicago

Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.

 

 

 

Get Tickets

CURE Epilepsy Discovery: CURE Epilepsy Grantee Discovers Specific Alterations in the Inhibitory Neurotransmitter System in Infantile Spasms (IS)

One of CURE Epilepsy’s Infantile Spasms (IS) Initiative’s grantees, Dr. Chris Dulla, developed a mouse model that simulates the neuronal excitation and inhibition relevant to IS. Animal models are incredibly useful to understanding the biological mechanisms underlying IS, and by better understanding the interplay between neural excitation and inhibition in IS, there is hope that we can develop targeted therapies.

 

 

 

Read Discovery

Register for Our Online Forum: Navigating Prescription Medication Access and Patient Support Programs

Navigating access to prescription medications and overcoming the financial barriers can be incredibly complex and frustrating. Join us for an informative virtual forum about the challenges to accessing prescription medications and cost-saving strategies.

 

 

 

 

Register

Save the Date for Our Newest Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission

Join CURE Epilepsy for our next Treatment Talk, a social-media broadcast that will be released Thursday, April 27 at 12pm CT on CURE Epilepsy’s YouTube channel. This talk will discuss focal epilepsy and the most recent treatments to help patients achieve medical remission. The talk features Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago and Sarah Carlson, a patient of Dr. Smith’s who battled epilepsy and its corresponding stigma for many years before achieving seizure freedom. Viewers will learn about focal epilepsy, how a new treatment (cenobamate), can offer patients the hope of medical remission, and the benefits and risks identified in recent clinical trials of cenobamate.

This talk is made possible through the generous support of SK Life Science.

Check Our YouTube Thursday, April 27 at 12pm CT

Watch Our Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy

Did you miss our March webinar, The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy? Don’t worry, you can watch the recording or read the transcript on our website! This webinar reviews the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar.

 

 

Watch

Siblings Day on April 10

 

Yesterday was Siblings Day, a day to recognize the amazing bond between siblings. When a child has epilepsy, it affects the entire family including the child’s siblings. Visit our Siblings Day event page to see Seizing Life episodes with siblings of individuals with epilepsy (including CURE Epilepsy Board Members Marilynn Gardner and Michael Axelrod) and a webinar on the impact seizures can have on the entire family.

 

Learn More

 

What’s New from the Seizing Life® Podcast

From Desperation to Hope: The Founding and Future of CURE Epilepsy featuring Susan Axelrod and Barbara Kelly

 

In 1998, Citizens United for Research in Epilepsy (CURE; the organization now known as CURE Epilepsy) was founded by parents of children with epilepsy who could no longer live with the status quo of epilepsy care. Desperate to help not only their own children, but also to create a better future for others living with epilepsy, these early advocates for epilepsy research changed the focus from “living well” with epilepsy to actively finding a cure for it. Susan Axelrod and Barbara Kelly were both there in the early years of CURE, gathering around a kitchen table to sow the seeds for the fledgling organization.

As CURE Epilepsy celebrates its 25th anniversary, Susan and Barbara join us to discuss the early years of CURE, their initial inspiration and vision for the organization, its impact on epilepsy research, and their hopes for the future of epilepsy treatments and cures.

Watch or Listen

 

 

The Crucial Role of Nurses in Epilepsy Care

 

Lucretia Long, an Advanced Practice Registered Nurse (APRN) and a Certified Nurse Practitioner (CNP), explains the training, duties, and responsibilities of an Advanced Practice Provider and discusses the vital role they play in filling gaps within epilepsy care caused by factors such as physician time limitations and the decline in medical school applicants.

 

 

Watch or Listen

Watch these and all of our upcoming Seizing Life episodes here.

The CURE Epilepsy Store

 

Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!

Shop

 

 

 

Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Jack’s Story

 

CURE Epilepsy Update March 2023

Greetings Epilepsy Community,

As CURE Epilepsy continues to celebrate our 25th anniversary, I’m reminded again of how far we have come as a community, how we have advanced our understanding of the brain, and how much closer we are to cures. This anniversary has given us a wonderful opportunity to look back on our accomplishments over the years and share with you the impact that your support and donations have made. We will continue to share stories of impact with you in our monthly Discovery emails, in our webinars, and on social media.

If you will indulge me for a moment, I would like to call out the amazing team at CURE Epilepsy that drives this impact on behalf of our community to get us to a world without seizures. By the time you read this, Employee Appreciation Day on March 3rd will have passed, but I have the privilege of working with the most amazing, dedicated team of scientists, fundraisers, communications professionals, and support staff that any leader could ask for. The CURE Epilepsy staff is deeply committed to driving our mission, ensuring that we steward every dollar donated by the community. For those of you who have had the opportunity to interact with these wonderful people, I hope that you share my sentiment.

And if you haven’t had a chance to meet the team, we hope to see you at CURE Epilepsy or community events throughout the year, whether that be at our 25th Anniversary Gala in Chicago this May, at the Purple Day® Expo in Florida later this month, or at one of the many CURE Epilepsy champion events held in your communities

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Tickets Now Available for our 25th Anniversary Gala in Chicago

Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.

 

 

 

Get Tickets

Take Our Important Community Survey Before it Closes

As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community.

The deadline to submit your feedback is today at 11:59pm CST. We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from individuals living with epilepsy, their loved ones, caregivers, epilepsy researchers, and clinicians in the community. If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.

 

Take Survey Now

CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy

Implantable epilepsy devices offer novel avenues to detect and treat seizures by recording seizure activity from neurons (brain cells) in high resolution and stimulating these neurons in a way that halts seizures. In this latest CURE Epilepsy Discovery, we highlight Brian Litt at the University of Pennsylvania who was funded by CURE Epilepsy in 2011, and whose work has led to the development of electrodes and technology that offer incredible precision in recording from and stimulating neurons.

Read Discovery

 

Paws for a Cause Awareness Event

Join Miami University’s PAWS for a Cause student organization for a hybrid (live + virtual), educational event featuring people living with epilepsy and family members sharing their experiences with service dogs. CURE Epilepsy’s CEO, Beth Lewin Dean, will also speak briefly about epilepsy and our organization.

 

Learn More

 

Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies

Did you miss our January webinar? Don’t worry, you can now watch the recording or read the transcript on our website! This webinar discusses the use of individualized antisense oligonucleotide (ASO) treatments for patients with nano-rare epilepsies. ASOs are short strands of modified deoxyribonucleic acids (DNA) that can be developed rapidly and inexpensively and can specifically target and potentially halt the development of disease-causing proteins, thus attempting to change the course of the disease.

 

Watch

Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy

Our next webinar will take place on Wednesday, March 29 at 2 pm ET and will review the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar. Stay tuned for more information.

 

Register

Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers

 

CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers, spoke with Fox 11 Los Angeles last week on their segment aimed at raising awareness of epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), and infantile spasms. Additional guests on the segment include CURE Epilepsy community member Francesca Calloway, mother of a child with epilepsy, and an Associate Clinical Professor of Pediatrics at UCLA, Dr. Shaun Hussain.

 

Watch

 

Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo

 

The Purple Day® for Epilepsy Awareness Around the World Expo is taking place Saturday, March 25, 2023, from 8:15 am-5 pm ET at Disney’s Contemporary Resort in Florida. Programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to increase epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and support available to them. CURE Epilepsy will present the Purple Day® Talk session “CURE Epilepsy’s Research & Response to the Rare Epilepsy Community” during the expo. Be sure to stop by our booth and say hi!

 

Learn More

 

Mind Your Brain Conference at Penn Medicine

 

Register today for The Mind Your Brain conference (which can be attended in person or virtually). This conference is focused on Traumatic Brain Injury (TBI) survivors, families and friends and is designed to share research, insights, therapies and other useful information with attendees, and also provide a forum for attendees to interact and connect with others affected by a brain injury.

 

Register

 

What’s New from the Seizing Life® Podcast

After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers

 

Carmen Zannier shares her 35-year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.

 

Watch or Listen

 

 

Epilepsy Can’t Stop Young Girl’s Competitive Spirit

 

When it became clear that Christiane needed special attention and considerations in her training program, her father decided to become her coach. Despite experiencing seizures before races, Christiane has continued to compete at the highest level, making it to the final round of the 2021 Junior Olympics in the 100-meter dash. Even as they struggle to control Christiane’s seizures, her parents continue to support and encourage Christiane’s passion for running, and Christiane’s competitive spirit remains intact as she looks forward to the next Junior Olympic trials.

Watch or Listen

 

Watch these and all of our upcoming Seizing Life episodes here.

The CURE Epilepsy Store

 

Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!

 

 

 

 

Shop

Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • March 25 – Purple Day® Expo at Disney World
  • March 26 – Purple Day®
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Michael’s Story

 

Researcher Update: February 2023

In this Researcher Update you’ll find information on:

Participation Requested in an Important Community Survey from CURE Epilepsy

As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community. There are specific questions around the research that we fund where we need feedback from the epilepsy research community.

The anonymous survey takes about 15 minutes to complete, and participants who fill out the survey by March 2 will be entered into a drawing to win one of ten (10) $75 Visa gift cards as a thank-you for participating.

We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from researchers and clinicians in the community.

If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.

Take Survey

Funding Opportunity for Neurotech Devices from The Center for Innovative NeuroTech Advancement (CINTA) and NeuroTech Harbor (NTH)

CINTA and NTH seek groundbreaking, collaborative projects to improve the diagnosis and treatment of disorders of the nervous system or their sequelae. The technologies proposed in applications must have a pathway to a prototype ready for first-in-human testing within four years. If successful, projects should be viable candidates for commercial development or have a viable and sustainable financial plan for rare disorders. Pre-proposals are being accepted until March 16, 2023.

Learn More

American Epilepsy Society (AES) Now Accepting Applications from Established Investigators for Three Funding Opportunities

Applications are being accepted through Thursday, March 23, 2023, for three funding mechanisms by AES to support established investigators working in basic, translational, and clinical research for epilepsy, seizures, and related disorders.

Learn More

Join Project Echo

The Epilepsy Foundation, Rare Epilepsy Network (REN), and the American Academy of Pediatrics (AAP) are launching an ECHO to increase the knowledge and skills of providers to effectively diagnose and treat rare or genetic epilepsy, Developmental & Epileptic Encephalopathies (DEEs), and epilepsy syndromes as well as their comorbidities. They are recruiting neurologists (pediatric and adult), epileptologists, trainees, pediatricians, and other health professionals to join this learning collaborative.

The ECHO will run March – June 2023 and will meet twice monthly at 1 pm CT/2 pm ET for 1-hour on alternating Wednesdays and Fridays for a total of nine sessions. To learn more, view the attached flyer here. For more information, please contact Alexis Katzenbach, ECHO Manager.

Learn More

NINDS-Sponsored Workshop on Status Epilepticus After Benzodiazepines: Seizures and Improving Long-Term Outcomes

Register now for this NINDS-sponsored workshop taking place from February 28-March 1. The recent approval of intramuscular midazolam (Seizalam®) for acute treatment of status epilepticus (SE) is an important advancement for the treatment of epilepsy. However, effective treatments that improve neuropathic outcomes after SE becomes refractory to benzodiazepines are a common unmet medical need. This virtual workshop will convene preclinical and clinical researchers, as well as other relevant stakeholders to discuss and define potential therapeutics needed to improve outcomes following SE.

Register

National Workshop on Experimental Models of Post-Traumatic Epilepsy

Register now for this free workshop taking place both in-person at Texas A&M University and via Zoom on Friday, March 10. The Texas A&M Health Institute of Pharmacology and Neurotherapeutics (IPN) is hosting an AES-sponsored National Workshop on Experimental Models of Post-Traumatic Epilepsy (PTE). The IPN team invites you and your colleagues to learn the various facets of PTE research to discover and advance therapeutic agents for this form of epilepsy. The workshop will provide insights into animal models of PTE, laboratory protocols, biomarkers, and therapeutic interventions for traumatic brain injury-induced seizures and post-traumatic epileptogenesis.

Register

Researcher Update: January 2023

In this Researcher Update you’ll find information on:

Last Call to Submit Letters of Intent for CURE Epilepsy’s 2023 Taking Flight and CURE Epilepsy Awards

Last reminder to submit your Letter of Intent for our Taking Flight and CURE Epilepsy awards. All Letters of Intent are due by tomorrow, Tuesday, January 10, 2023, at 9 pm ET.

The Taking Flight Award seeks to promote the careers of early career-stage epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

The CURE Epilepsy Award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Key priority areas for both awards include: 1) basic mechanisms of epilepsy, 2) acquired epilepsies, 3) pediatric epilepsies, 4) SUDEP, 5) treatment-resistant epilepsies, and 6) sleep and epilepsy.

We look forward to receiving your submissions!

See Award Guidelines

NeuroFrontiers Podcast on Childhood-Onset Epilepsy Featuring Research Funded by CURE Epilepsy

Research on the impacts of brain aging in childhood-onset epilepsy supported by funding from CURE Epilepsy is featured in a recent NeuroFrontiers podcast. Listen as Drs. Bruce Hermann, Professor Emeritus at the University of Wisconsin, Madison, WI, and Shlomo Shinnar, Professor Emeritus at Albert Einstein College of Medicine, New York, NY, share insights from a longitudinal study on epilepsy that began in Finland over 50 years ago.

Listen

SUDEP Research Funding Opportunity for Early Career Scientists

PAME (Partners Against Mortality in Epilepsy) is partnering with the American Epilepsy Society (AES) to fund ideas that advance SUDEP Summit priorities through the AES Early Career Grants program. Trainees, fellows, and newly independent investigators are encouraged to apply to any of the eight funding opportunities available. Specifically, PAME is interested in funding projects to advance priorities that will impact SUDEP prevention in the next 5 years. Applications are due Thursday, January 12, 2023.

See Funding Opportunities

NINDS-Sponsored Workshop on Status Epilepticus After Benzodiazepines: Seizures and Improving Long-Term Outcomes

Register now for this NINDS-sponsored workshop taking place from February 28-March 1. The recent approval of intramuscular midazolam (Seizalam®) for acute treatment of status epilepticus (SE) is an important advancement for the treatment of this epilepsy. However, effective treatments that improve neuropathic outcomes after SE becomes refractory to benzodiazepines are a common unmet medical need. This virtual workshop will convene preclinical and clinical researchers, as well as other relevant stakeholders to discuss and define potential therapeutics needed to improve outcomes following SE.

Register

National Workshop on Experimental Models of Post-Traumatic Epilepsy

Register now for this free workshop taking place both in-person at Texas A&M University and via Zoom on Friday, March 10. The Texas A&M Health Institute of Pharmacology and Neurotherapeutics (IPN) is hosting an AES-sponsored National Workshop on Experimental Models of Post-Traumatic Epilepsy (PTE). The IPN team invites you and your colleagues to learn the various facets of PTE research to discover and advance therapeutic agents for this form of epilepsy. The workshop will provide insights into animal models of PTE, laboratory protocols, biomarkers, and therapeutic interventions for traumatic brain injury-induced seizures and post-traumatic epileptogenesis.

Register

Open Position for a Director of The Spinal Cord and Brain Injury Research Center at University of Kentucky College of Medicine

The University of Kentucky (UK) College of Medicine invites applications and nominations for the position of Director to lead the highly ranked Spinal Cord and Brain Injury Research Center (SCoBIRC).

The UK College of Medicine seeks a visionary director with a successful record of research achievement in neurotrauma specifically in spinal cord injury, traumatic brain injury, or appropriately related fields. Exceptional accomplishments as a researcher and academic are a must as the director’s duties will include continuing their own research program as well as supervising and maintaining academic activities.

Learn More and Apply

Survey for Routine Clinical Care Patient-Centered Outcomes for Adults and Children with Epilepsy

ICHOM (The International Consortium for Health Outcomes Measurement), an international nonprofit organization that aims to improve global healthcare, is developing a minimum set of outcomes to be captured in routine clinical care for adults and children with epilepsy.

The Working Group (WG), consisting of healthcare professionals, researchers, and those with lived experience have identified outcomes to be included in the recommendation and is seeking feedback from epilepsy professionals and experts on the relevance of these elements.

The survey should take 15-20 minutes to complete, and the results will be used to guide the WG’s final recommendations. Please share your expertise and provide feedback to help standardize outcome measurements for epilepsy care globally.

Take Survey

Researcher Update: November 30, 2022

In this Researcher Update you’ll find information on:

Final Reminder to RSVP for CURE Epilepsy’s Reception on December 4th at the AES Meeting in Nashville

RSVP now to join CURE Epilepsy leadership and fellow dedicated researchers in honoring our newest grantees during our reception on December 4th at the 2022 American Epilepsy Society Annual Meeting. Light refreshments will be served.
The reception will be held:

  • Sunday, December 4, 2022 @ 6:00 pm – 7:30 pm CT
  • Location: Omni Nashville Hotel, 250 Rep. John Lewis Way South, Nashville
  • Room: Legends A/B (Level 2)

We look forward to seeing you all!

Please note, this is not an official event of the 2022 AES Annual Meeting, nor is it sponsored or endorsed by AES

RSVP Here

Letter of Intent Submissions Open Today for CURE Epilepsy’s 2023 Taking Flight and CURE Epilepsy Awards

Submit your Letter of Intent for our Taking Flight and CURE Epilepsy awards starting today. All Letters of Intent are due by Tuesday, January 10, 2023, at 9 pm ET.

The Taking Flight Award seeks to promote the careers of young epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

The CURE Epilepsy Award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Key priority areas for both awards include: 1) basic mechanisms of epilepsy, 2) acquired epilepsies, 3) pediatric epilepsies, 4) SUDEP, 5) treatment-resistant epilepsies, and 6) sleep and epilepsy.

We look forward to seeing your submissions!

See Award Guidelines

The Pershing Square Foundation Launches the MIND (“Maximizing Innovation in Neuroscience Discovery”) Prize

With the launch of the MIND Prize, The Pershing Square Foundation strives to change the paradigm of neuroscience research by creating a community of next-frontier thinkers who can uncover a deeper understanding of the brain and cognition. Breakthroughs in basic scientific and translational research will yield critical tools for and knowledge of neurodegenerative diseases, including Alzheimer’s disease and dementia. The MIND Prize will bring together the most talented early-to-mid-career investigators across scientific fields with creative and experimental ideas to solve problems that will transform the current understanding of the brain and its impact on human health. The deadline to submit Letters of Intent is Monday, December 12, 2022.

Learn More

SUDEP Research Funding Opportunity for Early Career Scientists

PAME (Partners Against Mortality in Epilepsy) is partnering with the American Epilepsy Society (AES) to fund ideas that advance SUDEP Summit priorities through the AES Early Career Grants program. Trainees, fellows, and newly independent investigators are encouraged to apply to any of the eight funding opportunities available. Specifically, PAME is interested in funding projects to advance priorities that will impact SUDEP prevention in the next 5 years. Applications are due Thursday, January 12, 2023.

See Funding Opportunities

Apply Now for a Postdoctoral Diversity Enrichment Program (PDEP)

The Sergievsky Award for Epilepsy Health Equity and Diversity provides support for early career physicians and scientists who identify as members of underrepresented racial and ethnic groups, and/or who are researching issues that affect medically underserved individuals with epilepsy or seizures or related aspects of health equity. Proposals are due Thursday, January 12, 2023.

Learn More

Funding Opportunity with Burroughs Wellcome Fund (BWF) Innovation in Regulatory Science Awards (IRSA)

BWF’s Innovation in Regulatory Science Awards provides up to $500,000 over five years to academic investigators developing new methodologies or innovative approaches in regulatory science that will ultimately inform the regulatory decisions made by agencies such as the Food and Drug Administration. The deadline to apply is Friday, February 10, 2023.

Learn More

Register for the NIH and NINDS Workshop “Status Epilepticus after Benzodiazepines: Seizures and Improving Long-Term Outcomes”

This virtual workshop, taking place February 28 – March 1, 2023, will convene preclinical and clinical researchers as well as stakeholders to discuss and define indications of potential therapeutics needed to improve outcomes following status epilepticus. Outcomes of the workshop will include a clearer understanding of the unmet therapeutic needs and identification of key gaps in the research, increasing the potential for new therapeutics development.

Learn More

Researcher Update: November 2022

In this month’s Researcher Update you’ll find information on:

RSVP for CURE Epilepsy’s Reception on December 4th at the AES Annual Meeting

Join CURE Epilepsy leadership and fellow dedicated researchers in honoring our newest grantees during our reception on December 4th at the 2022 American Epilepsy Society Annual Meeting. Light refreshments will be served.

The reception will be held:

  • Sunday, December 4 from 6 – 7:30 pm
  • Location will be available shortly
  • Check our website for updates!

We look forward to seeing you all!

Please note, this is not an official event of the 2022 AES Annual Meeting, nor is it sponsored or endorsed by AES

RSVP Here

Letter of Intent Submission Opens Wednesday, November 30th for CURE Epilepsy’s 2023 Taking Flight and CURE Epilepsy Awards

Submit your Letter of Intent for our CURE Epilepsy and Taking Flight awards starting Wednesday, November 30th. All Letters of Intent are due by Tuesday, January 10, 2023, at 9 pm ET.

The Taking Flight Award seeks to promote the careers of young epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

The CURE Epilepsy Award reflects CURE Epilepsy’s continued focus on scientific advances that have the potential to truly transform the lives of those affected by epilepsy, with prevention and disease modification as critical goals.

Key priority areas for both awards include: 1) basic mechanisms of epilepsy, 2) acquired epilepsies 3) pediatric epilepsies, 4) SUDEP, 5) treatment-resistant epilepsies, and 6) sleep and epilepsy.

We look forward to seeing your submissions!

See Award Guidelines

Register for the NIH/NCATS Workshop “The Quest for Innovative Molecular Treatment Modalities for Intractable Disease Targets” Taking Place November 17-18, 2022

Registration is now open for the NIH/NCATS Workshop “The Quest for Innovative Molecular Treatment Modalities for Intractable Disease Targets” to be held virtually on November 17-18 from 11 am – 4 pm ET. Members of the extramural scientific community, government agencies, health care providers, industry, and the public are invited to share their perspectives with the goal of identifying pain points for developing treatments against targets traditionally considered intractable to current methods of drug discovery.

Register

Sign Up for an NINDS Biomarker Webinar to Learn More About Funding Opportunities

The Neuroscience Biomarker Program is dedicated to advancing biomarkers for neurological disease and is focused on supporting research to promote biomarkers that will improve the quality and efficiency of Phase II clinical trials and clinical practice. An interactive Q&A webinar will be held for interested applicants on Thursday, November 10, 2022 at 2:00 pm ET. All investigators who are interested in learning about the NINDS Biomarker funding opportunities are encouraged to participate.

Register

Apply Now for a Postdoctoral Diversity Enrichment Program (PDEP)

Apply by January 18, 2023 for this Postdoctoral Diversity Enrichment Program (PDEP) that provides a total of $60,000 over three years to support the career development activities for underrepresented minority postdoctoral fellows in a degree-granting institution in the United States or Canada whose training and professional development are guided by mentors committed to helping them advance to stellar careers in biomedical or medical research.

Learn More

Register For the Hybrid Neuroscience 2022 Event “The Neural Exposome and Why it’s Important to You!”

Be part of this event either in-person in San Diego, CA or dial-in remotely on November 15, 2022, from 6:30 – 9:30 pm PT. Many neurological disorders have complex etiologies that include noninheritable factors, collectively called the neural exposome. The National Institute of Neurological Disorders and Stroke has developed a new office with goals to advance our understanding of the multiple causes of neurological illness. This satellite event will feature a panel of experts to discuss neural exposomic research, its impact on health inequities, and why this is important to you.

Learn More

 

Researcher Update: March 2020

We hope you are staying safe and healthy during this time which is challenging due to the rapidly evolving nature of the COVID-19 pandemic. While professional events and conferences have been postponed or cancelled (see below), great research funding and career opportunities are still available. Please read on to learn about the Department of Defense CDMRP Epilepsy Research Program funding pre-announcement and the faculty positions available at the Rutgers University Department of Neurosurgery.

Epilepsy Conference and Meeting Updates

To meet World Health Organization guidelines and protect participants, the following conferences and meetings have been cancelled or postponed:

  • American Academy of Neurology Meeting: Cancelled
  • Curing the Epilepsies 2020: Postponed to January 4-6, 2021
  • 7th International Residential Course of Drug Resistant Epilepsies: Postponed to September 20-26, 2020
  • GRC on Mechanisms of Epilepsy and Neuronal Synchronization: Postponed to 2022
  • Neurotrauma 2020: Cancelled, next meeting July 11-14 in Austin, TX

We will continue to monitor upcoming events and provide updates when possible.

Funding from the Department of Defense Epilepsy Research Program (ERP)

Learn More

The pre-announcement for ERP funding, managed by the Department of Defense office of Congressionally Directed Medical Research Programs (CDMRP), is now available. We encourage investigators whose projects aim to understand the causative links between traumatic brain injury (TBI) and epilepsy to check out this pre-announcement to plan and develop ideas for submission.

Faculty Positions: Rutgers University Department of Neurosurgery

Learn More [PDF]

The Rutgers University Department of Neurosurgery at Robert Wood Johnson and New Jersey Medical Schools and Rutgers Brain Health Institute is hiring faculty to build their translational neuroscience research program. The university is hiring for Assistant, Associate, and Full Professor positions.

CURE Update: How to get involved on SUDEP Action Day, View the Real Talk Live Stream, Rallying behind #Giving Tuesday and more

In this month’s update, we have a very important question to ask: are you ready to take your shot at epilepsy?

This November enter our Epilepsy Awareness Month raffle to help support groundbreaking research and the chance to win a fantastic prize package including: tickets to the final Chicago Hamilton performance, meals at award winning Chicago restaurants, accommodations, and more. Stay tuned – we’ll announce more details in the coming weeks.

The exciting news doesn’t stop there! In this update, please also find information on:

SUDEP Action Day: Take #5forEpilepsySafety on October 23

Learn More

SUDEP Action Day is a global event whose purpose is to educate the epilepsy community and beyond about the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Join the movement on Wednesday, October 23 and encourage your friends and family to take #5forEpilepsySafety – spend 5 minutes learning about SUDEP and preventative measures patients and families can take.

Rescue MedicationsWatch Real Talk: Speaking Up About Life with Epilepsy

Watch

This week, four young professionals joined us live to discuss navigating careers, dating, and friendships while living with epilepsy. You can catch the recording of this insightful discussion now on our website!

Seizing LifeYour Friends Can Fight for a Cure on #GivingTuesday

Learn More

On Tuesday, December 3, rally your Facebook friends to donate to cutting-edge epilepsy research that will push us closer to a cure. Setting up your own #GivingTuesday fundraiser is easy with Facebook! Follow these step-by-step instructions or click here to kick-off your campaign and let the world know how important funding research is to you.

Seizing LifeNew from Seizing Life, a CURE Podcast

Watch or Listen

Dive into the latest episodes of Seizing Life, where we explore:

Seizing LifeSecure Your Tickets to the 2019 Annual Chicago Benefit!

Learn More | Sponsor | Tickets

Join us on Monday, November 18 as we honor children whose lives have been touched by epilepsy and the researchers who propel us toward a cure.

This year listen to performances by Nils Lofgren – Rock and Roll Hall of Fame inductee, Miguel Cervantes – star of Chicago’s Hamilton, and Musicality – renowned Chicago-based youth vocal group will make the evening soar.

Epilepsy Awareness Day at DisneylandExciting and Informative CURE Events at Epilepsy Awareness Day at Disneyland!

Learn More | Attend

Stop by the CURE booth at the Epilepsy Awareness Day at Disneyland expo to hear interesting interviews with researchers and physicians about the latest promising studies and therapies.

In addition, tell us how your life would change if there was a cure for epilepsy. Share your “When You Wish Upon a Cure” story and you’ll have the chance to be one of 10 individuals to be interviewed by Seizing Life podcast host, award-winning blogger, and advocate Kelly Cervantes!

Visit our website to learn more about the other exciting events we have planned.

Upcoming CURE Events

October 23: SUDEP Action Day – Online
November 3: The 2019 TCS New York City Marathon – New York, NY
November 4-6: Epilepsy Awareness Day at Disneyland – Anaheim, CA
November 9: Dressage for a Cause – Batavia OH
November 18: CURE 2019 Annual Chicago Benefit – Chicago, IL
December 3: #GivingTuesday – Online

View All Upcoming Events