CURE Epilepsy Discovery: Funding Basic Mechanisms Research Drives Momentum Toward a CURE

Key Points:

  • For 25 years, CURE Epilepsy has been funding breakthrough research to advance science to find a cure for epilepsy. A key focus of our research grants has been understanding the basic biological mechanisms that result in epilepsy, which provides foundational knowledge that will ultimately lead to a cure for epilepsy.
  • One initiative funded by CURE Epilepsy, the Infantile Spasms (IS) Initiative, brought together a diverse team of medical and scientific experts to rapidly advance IS research and was the first initiative of its kind in the field of epilepsy.
  • John Swann of Baylor College of Medicine, whose work is discussed herein, was one of the grantees involved in the IS Initiative. He has progressed his initial discoveries, demonstrating the importance of funding basic mechanisms research to put us one step closer to a cure.
  • Basic research provides hope for a cure for the epilepsies; by better understanding the mechanisms that cause seizures, we can develop curative treatments for the epilepsies.

 

Deep dive

Twenty-five years ago, CURE Epilepsy was founded finding a cure for epilepsy and related seizure disorders, which now impacts 3.4 million Americans and 65 million people worldwide. The founders saw a need to push the research community to think differently about epilepsy research. This resulted in a paradigm shift for the community, moving from seeking treatments and therapies that would control seizures to focusing on innovative approaches that would advance science and find a cure for epilepsy. Achieving this goal would provide freedom from seizures and the negative side effects of medications. The organization determined that it could have the largest impact by focusing on understanding the basic biological mechanisms underlying the causes of epilepsy. Understanding is the first step in the scientific process, where researchers study the brain to gain a better understanding of why and how seizures are caused. These findings create foundational knowledge that may translate to new ideas to treat epilepsy and eventually preclinical and clinical trials. Clinical trials may ultimately lead to improved and potential cures. Hence, while the benefits of basic epilepsy research are not immediate, the rewards that basic research provides in terms of our understanding epilepsy are unparalleled.

Since 1998, CURE Epilepsy has funded over 280 research grants, and many have addressed the need to learn more about the basic biological mechanisms that underlie epilepsy. Many of these grants have formed the basis for further study, learning, and advancements that may lead us to a cure. One example of this is within infantile spasms (IS), a rare and particularly severe form of epilepsy, with approximately 90% of cases diagnosed in the first year of life. Infantile spasms manifest as sudden, jerking movements of the arms and legs, and are often accompanied by an irregular brainwave pattern on the electroencephalogram (EEG) called hypsarrhythmia.[1]These seizures are also often accompanied by significant cognitive and physical deterioration.[2] Current therapies for IS are effective in only half of the children with IS [3] and are associated with negative side effects, highlighting the need to find better and more effective treatments.

In 2013, CURE Epilepsy launched the Infantile Spasms Initiative, with $4 million in funding. The IS Initiative employed a multi-disciplinary and multi-location team science approach to study the basic biological mechanisms underlying IS, search for biomarkers and novel drug targets, and develop improved treatments. Work done as part of the IS Initiative proved successful across multiple dimensions and led to more than 19 publications. More about the IS Initiative can be found here.[4]

Understanding the basic biological mechanisms underlying IS was a key focus of the IS Initiative. One example of the IS Initiative’s success in understanding a key underlying basic mechanism is from the team led by Dr. John Swann of Baylor College of Medicine.[1] Dr. Swann and his team discovered that treatment with a derivative of the growth hormone insulin-like growth factor 1 (IGF-1) called (1-3) IGF-1 reduced spasms and irregular brain wave patterns on the EEG in an animal model. Adding this compound to vigabatrin, an FDA-approved treatment for IS, reduced the dose of vigabatrin required to eliminate the spasms. Adding this compound to vigabatrin, an FDA-approved treatment for IS reduced the dose of vigabatrin required to eliminate the spasms. Reducing the dosage also decreased the risk of serious side effects, including the potential for irreversible peripheral vision loss. The Swann lab patented this combination treatment and used the discovery to obtain two National Institutes of Health (NIH) grants. The NIH grants enabled Dr. Swann to build on the discoveries from the CURE Epilepsy-funded IS Initiative. In a subsequent study, data from Dr. Swann’s team revealed that the levels IGF-1 itself were lower in brain tissue from both a rat model and from infants with IS. Data also indicated that reduced expression of IGF-1 in the rat model affected the biological pathways critical for neurodevelopmental processes.[6]

Using the learnings from the IS Initiative as a foundation, through a series of additional experiments, the team confirmed that the (1-3) IGF-1 could also cross the blood-brain barrier with much higher efficiency than the full-length IGF-1 and activate the same biological pathways as full-length IGF-1.[7] The researchers administered it to the rats in their experiment, and successfully eliminated both the spasms and the hypsarrhythmia in most rodents. This exciting finding suggests that this smaller (1-3) IGF-1 or perhaps an IGF-1-like drug may one day be used to treat IS patients immediately after the condition is diagnosed. You can read more about this study here.

Dr. Swann and his team have continued to build on the learnings initially funded through their CURE Epilepsy grant; recently, the team studied seizure progression in IS, and the impact of spasms on learning and memory.[8] Infants with IS show developmental delay and behavioral abnormalities, with only 16% of patients with IS exhibiting normal intellectual development.[9] The reasons for a delay in intellectual development could be many, though they have not yet been determined.[10,11] Additionally, the trajectory of the decline in intellectual and behavioral abilities has not yet been documented due to the variability of the condition, and limitations in assessing intellectual abilities in infants. Spasms can be subtle, making an accurate diagnosis of the exact start of the spasms challenging.[12] Hence, whether the behavioral decline is caused by or simply associated in time with seizures in IS is an area where more research is necessary. Given the difficulties of understanding this relationship between seizures and cognitive decline in infants with IS, Dr. Swann’s team used rats with a history of spasms and assessed them in a series of tests to gauge their ability to learn and remember. Swann’s team used rats with a history of spasms and assessed them in a series of memory tests to gauge their ability to learn and remember. The team also studied their brainwaves using EEG.

Previous work by Dr. Swann’s team had developed a model to simulate IS in animal models.[13] In this model, a substance known as tetrodotoxin (TTX) is infused into the brains of infant rats 10-12 days after birth which causes many of the characteristics of IS, including spasms, seen in humans.[13] The research team then used tests to examine spatial and working memory. Spatial memory helps us remember locations and the relationship between locations, and working memory helps us remember a small part of the information in our minds temporarily. To better understand the brainwaves in rats that had spasms, Dr. Swann’s team performed continuous EEG recordings for a total of seven weeks after infusion of TTX.[8] Rats with spasms were compared with rats that did not have spasms. After seven weeks of EEG recording, behavioral tests were done to test learning and memory. The study showed that rats experiencing spasms showed impairment on the behavioral tests, pointing to issues in learning and memory, which are also seen in infants with IS.[8] EEG analysis showed that there was an increase in spasms for two weeks, and after the two weeks, spasms stabilized.[8] Seizure progression in epilepsy has long been a topic of intense research. The current study suggests that like other seizure disorders[14,15], there may be a critical period in IS when there is a gradual increase in spasm intensity over time. A better understanding of seizure progression patterns in IS could lead to clues about therapies, management, and prognosis. This work from Dr. Swann’s lab is unique as the team did rigorous EEG monitoring and behavioral analysis; these techniques are time and labor-intensive, and seizures in IS have not been studied this deeply before.[8] The neurological mechanisms that underlie memory disturbances and seizure progression in IS are not fully known. So, seizures could be correlated with the learning deficits, but exact details are not clear. Additional research using EEG monitoring coupled with behavioral analysis in the same animals could provide clarity into the relationship.

In conclusion, basic research provides a foundational understanding of underlying biology of a disease process from which cures for the epilepsies will be found. CURE Epilepsy has been funding basic research for 25 years with the sole mission of finding a cure for epilepsy. Dr. Swann’s work as part of the IS Initiative is one example of how strategic, long-term investment in basic research can advance our knowledge by leaps and bounds.

 

 

Literature Cited:

  1. Gibbs EL, Fleming MM, Gibbs FA. Diagnosis and prognosis of hypsarhythmia and infantile spasms Pediatrics. 1954 Jan;13:66-73.
  2. Cowan LD, Hudson LS. The epidemiology and natural history of infantile spasms J Child Neurol. 1991 Oct;6:355-364.
  3. Knupp KG, Coryell J, Nickels KC, Ryan N, Leister E, Loddenkemper T, et al. Response to treatment in a prospective national infantile spasms cohort Ann Neurol. 2016 Mar;79:475-484.
  4. Lubbers L, Iyengar SS. A team science approach to discover novel targets for infantile spasms (IS). Epilepsia Open. 2021;6:49-61.
  5. Swann J, Lee, CL., Le, JT. and Frost Jr, JD. , inventor; Combination therapies for treating infantile spasms and other treatment resistant epilepsies 2022.
  6. Ballester-Rosado CJ, Le JT, Lam TT, Mohila CA, Lam S, Anderson AE, et al. A Role for Insulin-like Growth Factor 1 in the Generation of Epileptic Spasms in a murine model Ann Neurol. 2022 Jul;92:45-60.
  7. Yamamoto H, Murphy LJ. Enzymatic conversion of IGF-I to des(1-3)IGF-I in rat serum and tissues: a further potential site of growth hormone regulation of IGF-I action J Endocrinol. 1995 Jul;146:141-148.
  8. Le JT, Ballester-Rosado CJ, Frost JD, Jr., Swann JW. Neurobehavioral deficits and a progressive ictogenesis in the tetrodotoxin model of epileptic spasms Epilepsia. 2022 Dec;63:3078-3089.
  9. Hrachovy RA, Frost JD, Jr. Infantile epileptic encephalopathy with hypsarrhythmia (infantile spasms/West syndrome) J Clin Neurophysiol. 2003 Nov-Dec;20:408-425.
  10. Wirrell EC, Shellhaas RA, Joshi C, Keator C, Kumar S, Mitchell WG. How should children with West syndrome be efficiently and accurately investigated? Results from the National Infantile Spasms Consortium Epilepsia. 2015 Apr;56:617-625.
  11. Osborne JP, Lux AL, Edwards SW, Hancock E, Johnson AL, Kennedy CR, et al. The underlying etiology of infantile spasms (West syndrome): information from the United Kingdom Infantile Spasms Study (UKISS) on contemporary causes and their classification Epilepsia. 2010 Oct;51:2168-2174.
  12. Lux AL, Osborne JP. A proposal for case definitions and outcome measures in studies of infantile spasms and West syndrome: consensus statement of the West Delphi group Epilepsia. 2004 Nov;45:1416-1428.
  13. Lee CL, Frost JD, Jr., Swann JW, Hrachovy RA. A new animal model of infantile spasms with unprovoked persistent seizures Epilepsia. 2008 Feb;49:298-307.
  14. Jeavons PM, Bower BD. The natural history of infantile spasms Arch Dis Child. 1961 Feb;36:17-22.
  15. Golomb MR, Garg BP, Williams LS. Outcomes of children with infantile spasms after perinatal stroke Pediatr Neurol. 2006 Apr;34:291-295.

CURE Epilepsy Update January 2023

Happy 2023 CURE Epilepsy Community,

On behalf of the entire team at CURE Epilepsy, I would like to thank you for your support and generosity throughout 2022. Your ongoing support makes our mission of funding breakthrough research to find a cure possible.

2023 marks an incredibly significant milestone for CURE Epilepsy. This year we are celebrating 25 years of inspiring hope and delivering impact for the epilepsy community. Twenty-five years ago Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications joined forces to accelerate the search for a cure. From that frustration, CURE Epilepsy was born, and through their persistence and dedication, as well as the commitment of thousands of parents, caregivers, researchers, clinicians, people living with epilepsy and so many more along the way, we continue paving the path to advance science to find the cures for epilepsy.

During the past 25 years, we have raised over $90 million to achieve our mission and awarded more than 280 grants. We will not stop until we are all able to live in the world we envision. A world without epilepsy.

With commitment to inspire hope and deliver impact.

Warm Regards,


In this CURE Epilepsy Update, please find information on:


Champion Highlight: The Monast Family

In 2022, the Monast family from Eastern Pennsylvania, along with fellow CURE Epilepsy Champions, the Rosini family, organized the first annual Reagan’s Run. Reagan Monast, the inspiration for the race, was diagnosed with epilepsy nearly eight years ago before her second birthday. Reagan’s Run was a 5K or 1-mile run/walk to raise awareness and critical funds for epilepsy research in honor of Regan, family friend Dominic Rosini, and the 3.4 million other Americans living with epilepsy.

With the help of their friends and families, the Monasts and Rosinis raised nearly $30,000 to fund research to find a cure. You can become a Champion like the Monast and Rosini families by starting an awareness and fundraising event of your own to support CURE Epilepsy. If you need some ideas to get started or want additional information, you can contact CURE Epilepsy at events@CUREepilepsy.org. And stay tuned for more details about our 25th Anniversary CURE Epilepsy Champions Challenge.

 

Learn How to Become a CURE Epilepsy Champion


Our Newest Board Member…

Please join us in welcoming the newest addition to our Board of Directors, Justin Gover. Justin has over twenty-five years of experience in leadership positions in the biotechnology industry in the UK and the US, most recently as the CEO of GW Pharmaceuticals prior to its acquisition by Jazz Pharmaceuticals.

 

 

 

Learn More About All CURE Epilepsy Board Members


Start Your 2023 Off Right by Choosing to #SayEpilepsy

2022 may have come to an end, however, our Say the Word #SayEpilepsy campaign continues into 2023 as a way to help continue to raise epilepsy awareness. By saying and sharing Say the Word #SayEpilepsy, you can help make a difference in the lives of those within the epilepsy community who are in need of a cure.

 

 

 

Share Your Story


Child Life On Call Podcast with Guest Kelly Cervantes

On Wednesday, January 18th hear Kelly Cervantes share how her family sought to empower themselves in the face of their daughter Adelaide’s epilepsy, her work with CURE Epilepsy, and much more.

 

 

 

Listen Here on January 18


Save the Date for Purple Day

Mark your calendars now for Purple Day on Sunday, March 26! Purple Day is an annual, international grassroots effort to help build awareness for epilepsy around the globe. Join with the epilepsy community on this is a day of celebration, recognition, and awareness. You can also participate in the Purple Day Expo at Disney World on March 25th.

 

 

Learn More


What’s New from the Seizing Life® Podcast

Kids Ask Docs the Darndest Things About Epilepsy

 

Recorded live at Epilepsy Awareness Day at Disneyland this past November, kids who have epilepsy or have family members with epilepsy ask pediatric neurologists their questions about the disorder.

Watch or Listen

 

 

Managing Epilepsy with the Stress of the Holidays

 

Dr. Eva Alden, a Neuropsychologist at the Mayo Clinic joins us to explain the connection between stress and seizures, and offers advice, insights, and recommendations for those with epilepsy and their caregivers to help cope with stress and seizure triggers during the holidays.

Watch or Listen

 

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


 

The CURE Epilepsy Store

 

Looking for some apparel or accessories to raise epilepsy awareness during 2023? Check out the CURE Epilepsy Store now!

 

 

 

Shop


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

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • February 13, 2023 – International Epilepsy Day
  • March 25 – Purple Day Expo at Disney World
  • March 26 – Purple Day
  • October 18 – SUDEP Action Day
  • October 30 – November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7, 2023 – Infantile Spasms Awareness Week

 

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

Read Leonardo’s Story

 

CURE Epilepsy Update December 2022

Greetings Epilepsy Community,

December is always an amazing time for the advocates, clinicians, researchers and other partners working within the epilepsy community. We gather during the first week of December to attend the Partners Against Mortality in Epilepsy (PAME) and American Epilepsy Society (AES) meetings. We meet, share information, exchange ideas, brainstorm, and dream about a world without seizures.

It is also a highlight for the CURE Epilepsy team because we host a reception where we have the privilege of announcing our newest grantees to the community. It is an honor to fund these amazing investigators as they push science forward to find a cure for epilepsy. Throughout the years, our grantees have made remarkable contributions to the search for a cure, and we know that these most recent recipients do the same.

One of our past grantees, Dr. John Swann at the Baylor College of Medicine, has recently published on his research identifying a promising new treatment for the severe form of epilepsy known as infantile spasms (IS). IS is a rare and catastrophic form of epilepsy with standard treatments only working in approximately 50% of patients. I mention Dr. Swann’s research as yesterday was the final day of Infantile Spasms Awareness Week, which also takes place annually during the first week of December. You can read more about Dr. Swann’s work here and you can learn more about IS here.

As we turn the corner on 2022, please know how very grateful I am for your enduring support this year, including your incredible generosity on Giving Tuesday. You helped us kick off the giving season with over $75,000 in gifts. Your donations, especially now, enable us to continue to fund groundbreaking research such as Dr. Swann’s and our latest grantees. As you make your charitable gifts this month, we hope you will include CURE Epilepsy so we can continue to work towards giving the epilepsy community the greatest gift of all, a world without epilepsy.

Wishing you and your families a joyous holiday season and best wishes for the New Year!

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Give the Gift of Research This Season

On Giving Tuesday, our community came together to raise over $75,000 for research. As the season of giving continues, we ask that you make a gift to help us fund the critically needed research that will help lead us to a cure. This research gives hope to the 65 million people worldwide impacted by epilepsy including Captain Jack Somers, a United States Marine Corps Veteran, who has had epilepsy since 2010 after a combat-related injury but didn’t receive an “epilepsy” diagnosis until earlier this year.

 

 

Make a Gift


Free Webinar: Stem Cells & Epilepsy: A New Therapeutic Approach for Treating Drug-Resistant Epilepsy

Join us for this free webinar on Monday, December 19 from 2-3 pm CT. We will discuss a pioneering neural cell therapy approach that has the potential to lead to a novel treatment for drug-resistant focal epilepsy. Viewers will learn about the promising new data supporting this approach which will be presented by Dr. Robert Beach from the State University of New York (SUNY) Upstate Medical University, and they will hear more about the clinical trial and the immediate impact of this regenerative cell therapy from both the first patient enrolled in this clinical trial and a family member.

 

Learn More or Register


Congratulations to the Newest CURE Epilepsy Grantees

CURE Epilepsy is honored to present our latest grantees. Our research grants are awarded for cutting-edge, novel research projects that seek to accelerate treatments, improve outcomes, and get us to cures so that we can live in a world free of seizures.

 

 

 

 

Learn More


A Day in the Life – A Glimpse into the Day to Day of Having a Medically Complex Child

Filmed in early 2019 when Adelaide was 3 years old, this short documentary, produced by CURE Epilepsy, shows a day in the life of one family living with epilepsy. Kelly and Miguel Cervantes’ daughter Adelaide was diagnosed at 7 months old with infantile spasms, a devastating and difficult-to-treat form of epilepsy.

 

 

Watch


ReSearching to CURE Epilepsy Fall 2022 Edition

Miss our latest edition of ReSearching to CURE Epilepsy? Check out our most recent report showcasing our recent research breakthroughs, community stories, and events that help raise the funds to support advancing research to find a cure. You can read about these stories and more here.

 

 

 

See the Impact, Read the Stories

 


What’s New from the Seizing Life® Podcast

The Impact of Epilepsy and Seizures on Cognition and Memory

 

In this podcast, we speak with Dr. Alice Lam about the potential impacts of seizures on cognition and memory, both the short-term and the long-term effects. Dr. Lam also discusses how these impacts may differ amongst children, adults, and aging adults.

Watch or Listen

 

 

A Mother Shares her Daughter’s Journey from Infantile Spasms to Brain Surgery

 

Emma first displayed signs of infantile spasms at 4 months old. With the help of a home video and some “Mama Bear” research, Emma was quickly diagnosed and aggressive treatment with vigabatrin was started.

 

Watch or Listen

 

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


Other Podcasts Featuring CURE Epilepsy

Want to learn even more about epilepsy from the experts? CURE Epilepsy and some of our friends were recently highlighted on the following podcasts.

CURE Epilepsy CEO Beth Dean along with community advocate and mom Nora Hennessy spoke with Dr. Joseph Sirven about epilepsy and living with epilepsy on NPR’s “What’s Health Got to Do with It” in an episode released November 19 titled “Curing epilepsy; Mary Seacole, the little-known founder of modern nursing”.

Board Chair and Seizing Life host, Kelly Cervantes, talked about what it’s like to be a miraculous mama on the Miraculous Mamas podcast available here.

 


Black Friday Sale in the CURE Epilepsy Store

 

Our Black Friday comes to a close this Saturday, December 10! Get 20% off your entire purchase and guaranteed delivery before the holidays to help spread epilepsy awareness.

 

 

 

Shop


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

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • February 13, 2023 – International Epilepsy Awareness Day
  • March 26, 2023 – Purple Day
  • October 18, 2023 – SUDEP Action Day
  • November – Epilepsy Awareness Month
  • December 1-7, 2023 – Infantile Spasms Awareness Week

 

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

Read Keoni’s Story

 

CURE Epilepsy Grantee Announcement Fall 2022

CURE Epilepsy is honored to announce our newest CURE Epilepsy grantees. Our research grants are awarded for cutting-edge, novel research projects that seek to accelerate treatments, improve outcomes, and get us to cures so that we can live in a world free of seizures. This year’s grantees’ research will focus on a wide range of epilepsies – sudden unexpected death in epilepsy (SUDEP), sleep and epilepsy, genetic causes of epilepsy, Lafora disease, post-traumatic epilepsy, pediatric epilepsy, and focal epilepsy.

TAKING FLIGHT AWARD GRANTEES – $100,000 for one year 

This award seeks to promote the careers of early-career epilepsy investigators to allow them to develop a research focus independent of their mentor(s).

Jeffrey Calhoun, PhD
Northwestern University – Chicago, Illinois

With this grant, funded by the Joseph Gomoll Foundation, Dr. Calhoun’s research will work to develop a new method to assess the functionality of variants of the SCN1A gene.
Learn More

William Tobin, PhD
The University of Vermont and State Agriculture  – Burlington, Vermont

With a grant co-funded by the KCNT1 Epilepsy Foundation, Dr. Tobin will test strategies to optimize cutting-edge gene therapy methods for the gene KCNT1.
Learn More

Gerben van Hameren, PhD
Dalhousie University– Nova Scotia, Canada

Dr. van Hameren will study a possible way to prevent the development of post-traumatic epilepsy.
Learn More

_________________

CURE EPILEPSY AWARD GRANTEES – $250,000 over two years  

This 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.

Gordon Buchanan, MD, PhD
University of Iowa Medicine – Iowa City, Iowa

For this grant, generously funded by The Joanna Sophia Foundation, Dr. Buchanan’s group will examine whether a signaling molecule called serotonin drives a time-of-day vulnerability to SUDEP (Sudden Unexpected Death in Epilepsy).
Learn More

Annaelle Devergnas, PhD
Emory University – Atlanta, Georgia

The hypothesis for Dr. Devergnas’ project is that frontal seizures disrupt the normal function of the brain structure called the pedunculopontine nucleus (PPN), leading to changes in sleep, and that manipulating PPN activity might restore normal sleep activity.
Learn More

Juliet Knowles, MD, PhD
Stanford School of Medicine – Palo Alto, California

For this project, Dr. Knowles and her team will study the therapeutic potential for targeting myelin plasticity in Lennox-Gastaut syndrome.
Learn More

_________________

CATALYST AWARD GRANTEES – $250,000 over two years 

The CURE Epilepsy Catalyst Award stimulates and accelerates the development of new, transformative therapies for epilepsy, moving promising preclinical and/or clinical research closer to clinical application.

James Pauly, PhD, Greg Gerhardt, PhD, and Matthew Gentry, PhD
University of Kentucky – Lexington, Kentucky

In collaboration with Enable Therapeutics, Drs. PaulyGerhardt, and Gentry developed a potential drug called VAL-1221 that can penetrate brain cells and degrade the aberrant sugar aggregates therein that cause LaFora disease. Having obtained promising initial results, this project will test the safety and brain distribution of this novel therapy.
Learn More

John Gledhill, PhD
Cognizance Biomarkers, LLC  – Philadelphia, Pennsylvania

Dr. Gledhill and the team at Cognizance will build upon their preliminary research showing that people with treatment-resistant epilepsy have differences in inflammation-associated proteins in the blood compared with those who do respond to treatment. For this project, the team proposes to extend their observations by assessing additional blood samples from treatment-resistant and treatment-responsive people with epilepsy and developing an algorithm to predict response to initial anti-seizure medications.
Learn More

CURE Epilepsy Update November 2022

Greetings Epilepsy Community,

The end of the year is a very busy time for the epilepsy community. In October we commemorated SUDEP Action Day. All of November is dedicated to celebrating Epilepsy Awareness Month. And in the first week of December, we have both Infantile Spasms Awareness Week and the American Epilepsy Society annual meeting in Nashville where epilepsy healthcare providers, scientists, advocates, industry, and other professionals gather to drive better outcomes for people with epilepsy. We’re so excited about all the content that we have been and will be showcasing through these important times that ultimately reinforces the need to fund research to find a cure.

In addition to the need for more research funding, awareness is a challenge that the epilepsy community continues to face. The lack of awareness and understanding of this medical condition creates impediments for those living with epilepsy. People may face stigma at work, school, and other social interactions. To help shine a light on epilepsy and bring the “e” word to the forefront, we have launched the Say the Word #SayEpilespy campaign . . . so that the general public gains a better understanding of epilepsy and how widespread it is . . . so that we can eliminate the stigma . . . so that people with epilepsy and their caregivers know that they are not alone . . . so that clinicians affirm the importance of using the word “epilepsy”. . . so that we can raise money to fund research to find a cure.

As we continue to search for a cure for this under-represented and under-funded neurological disorder, please consider making a donation to us on this upcoming Giving Tuesday, the day of global generosity. We remain grateful to you for your support of our mission, including those who have financially supported us in the past.

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Thanks to You, We Raised Over $230,000 Through Unite to CURE Epilepsy!

Thanks to the generosity of supporters like yourself and the Ann G. and James B. Ritchey Foundation for their donation match, we raised over $230,000 to support epilepsy research. If you missed the Unite to CURE Epilepsy program during its premiere, or if you want to watch it again, you can find it online here.

 

 

Watch Unite to CURE Epilepsy

 

 


CURE Epilepsy Discovery: CURE Epilepsy Grantees Explore Genetic Determinants of Sudden Unexpected Death in Pediatrics (SUDP)

Sudden infant death syndrome (SIDS), sudden unexpected infant death (SUID), and sudden unexplained death in childhood (SUDC) are tragic conditions referring to the unexplained death of an infant or child. While previously thought of as separate entities, evidence suggests that there is an overlap between these conditions and that they may be considered under the overarching umbrella of sudden unexpected death in pediatrics (SUDP).

Our latest CURE Epilepsy Discovery dives into the research conducted by Dr. Annapurna Poduri and her team at Boston Children’s Hospital that shows evidence for genetic factors that may play a role in SUDP; while some genes were already potentially associated with sudden death in children, several variants in genes previously not associated with SUDP were identified.

 

Read the Discovery

 


Epilepsy Awareness Month – Say the Word #SayEpilespy

During Epilepsy Awareness Month, we are asking everyone within our community (people living with epilepsy, caregivers, medical professionals, researchers, and friends) to share their epilepsy stories through our Say the Word #SayEpilepsy campaign. The more we use the word “epilepsy” when we are talking about this disorder, the more aware the general population will become of the condition. Visit the Say the Word #SayEpilepsy page to see individual stories on why saying the word “epilepsy” is so important to them and share your own #SayEpilepsy story on social media (don’t forget to tag us)!

 

Share My #SayEpilepsy Story


CURE Epilepsy CARES Comes to Baltimore

CURE Epilepsy CARES (Conversations About Research in Epilepsy and Seizures) brings together patients, families, medical professionals, researchers, and others touched by epilepsy to engage in conversation and have their questions about cutting-edge research and epilepsy treatments answered by clinicians. If you are in the Baltimore area, you can register now for our free event on Saturday, November 5 at Johns Hopkins Children’s Hospital. Want to experience a CURE Epilepsy CARES event, but aren’t near the live event? You can watch recordings of previous CURE Epilepsy CARES events on our website here.

Register


Chicago and New York City Marathons

Thank you to the Team CURE Epilepsy Chicago Marathon runners who helped us raise over $42,000 to help us find a cure! Special shoutout to Clare Phelps who was featured on NBC 5 Chicago talking about why she chose to advocate for her daughter and raise funds for CURE Epilepsy. Watch here.

And looking to the future, we are excited for the TCS New York City Marathon coming up this Sunday. We know Team CURE Epilepsy will continue to race for a cure for epilepsy and we wish all participants good luck!

Want to participate in next year’s marathons? Why wait to register? You can sign-up today and get started on your training right away! Click here to see information and register for the 2023 Chicago Marathon and click here to see information on the 2023 New York City Marathon.

See All Upcoming Events


What’s New from the Seizing Life® Podcast

A Marine Explains the Value of Receiving An Accurate Epilepsy Diagnosis A Decade Late

 

Former Marine, Captain Jack Somers, shares his long journey to an accurate epilepsy diagnosis. After more than a decade of seizures and a diagnosis of “generalized seizure disorder” from both the Veterans Administration and numerous neurologists, Jack Somers was finally told that he has epilepsy. Jack shares his confusing and sometimes frustrating journey to diagnosis.

Watch or Listen

 

 

Remembering a Brother Lost to SUDEP and Finding Hope in Community featuring CURE Epilepsy Board Member Hannah Whitten

 

Hannah’s older brother Dylan lived with epilepsy nearly his entire life, until he passed away from SUDEP (Sudden Unexpected Death in Epilepsy) at the age of 25. Hannah tells us about her brother’s attitude and determination not to let epilepsy define or limit his life, attending and graduating from college, working, and eventually living on his own.

Watch or Listen

 

 

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


The CURE Epilepsy Store

 

Shop the CURE Epilepsy Store and help spread awareness with our CURE Epilepsy merchandise.

Shop

 

 


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

  • November 1 – Epilepsy Awareness Month
  • November  29 – Giving Tuesday
  • December 1-7 – Infantile Spasms Awareness Week
  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • February 13, 2023 – International Epilepsy Awareness Day
  • March 26, 2023 – Purple Day

 

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

Read Mariah’s Story

 

CURE Epilepsy Update October 2022

Greetings Epilepsy Community,

I hope that you were able to watch our 3rd annual Unite to CURE Epilepsy virtual event which premiered last week. We were honored to have had epilepsy community members tune in from all over the US and around the world starting from our home base of Chicago, Illinois to Santa Monica, California, and even as far as Beirut, Lebanon, and Tokyo. We are thrilled to announce that we have raised $150,200 to date through your contributions to Unite to CURE Epilepsy. Those funds will help us continue to fund critical research toward finding a cure.

As we continue our search for a cure, every dollar counts, and thanks to the generosity of the Ann G. and James B. Ritchey Foundation, all gifts through Sunday, October 16 will be matched up to $25,000! If you haven’t yet made your gift or you want to give again to make your donation go even further, please donate here by Sunday, October 16!

Because of supporters like yourself, CURE Epilepsy has been funding critically needed research for almost a quarter of a century. One area of research that we have focused on is Sudden Unexpected Death in Epilepsy (SUDEP). We have funded over $5.5 million in grants studying SUDEP, making us the leading private funder of research in this area. Wednesday, October 19 is SUDEP Action Day, a day when the epilepsy community comes together to promote awareness of SUDEP, educate on the risk factors associated with SUDEP, and drive conversations that will increase SUDEP prevention. It also affords us an opportunity to remember those that we have lost and to comfort the bereaved within our community. SUDEP is one of the most devastating but least discussed consequences of epilepsy. Be sure to follow us on social media to see all of the content and share it with your friends and family during the entire week of October 17th in honor of SUDEP Action Day.

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Thank You for Your Support of Unite to CURE Epilepsy 2022

Thank you to everyone who joined us for CURE Epilepsy 2022. We’ve already raised over $150,200 and thanks to a generous donor, all gifts made before Sunday, October 16 will be matched up to $25,000. And remember, if you missed the virtual event, you can still watch it online! 

 

Learn More

 

 


Your Donation Will Go Twice as Far Thanks to a Donation Match!

The Ann G. and James B. Ritchey Foundation is doubling the impact of your donation! All donations made through Sunday, October 16 will be matched up to $25,000. Whatever amount you are able to give, it will be matched! $5 becomes $10, $25 becomes $50, $500 becomes $1,000! Donate today to make the most of your gift.

 

Double My Impact

 

 


SUDEP Action Day

Wednesday, October 19 is SUDEP Action Day. It is a day for the international epilepsy community to raise awareness about SUDEP (Sudden Unexpected Death in Epilepsy), which occurs when a seemingly healthy person with epilepsy dies for no known or obvious reason. Join CURE Epilepsy throughout the week of October 17 to learn about SUDEP, SUDEP risks, and new SUDEP research. Please also encourage your friends and families to share this information. We have to #talkSUDEPnow to raise awareness about SUDEP and educate families to reduce the SUDEP risk for a loved one living with epilepsy.

Join the Fight Against SUDEP

 


CURE Epilepsy Discovery: Brain Aging in Childhood-Onset Epilepsy: A Long-Term, Population-Based Study

Little is known about how the brain and brain function change with aging in older people with epilepsy, particularly among those with childhood-onset epilepsy (COE). CURE Epilepsy funded Dr. Bruce Hermann (University of Wisconsin, United States) and Dr. Matti Sillanpää (University of Turku, Finland) to study the intersection of epilepsy and aging in a unique population-based group of people with epilepsy [1]. This group of people, whom Dr. Sillanpää had been following over decades, consists of persons diagnosed with COE when they were less than 16 years old (4.6 years of age on average). If confirmed with a larger group of people, these data could impact epilepsy treatment and our understanding of how epilepsy and aging overlap.

Explore the Latest Discovery

 


 

Free Webinars (Previous and Upcoming!)

Register Now for Today’s Webinar: Advanced Imaging in Epilepsy: How MEG Can Assist in Surgery

 

In this free webinar, held today from 1-2 pm CT, we will discuss magnetoencephalography (MEG) which is the newest, most advanced technology that can be used to help close the gap between the roughly 4,000 epilepsy surgeries performed each year and the estimated 100,000-200,000 people with epilepsy who may benefit from epilepsy surgery.

MEG can pinpoint the source of abnormal brain activity and seizures, is painless, safe, and requires only 1.5-2 hours to perform. Ultimately, MEG can help surgeons decide whether a patient should pursue surgery. The use of MEG may allow more patients to be identified for surgery, and potentially lead to greatly reduced or no seizures.

Register Now

 

Miss Our September Webinar The Effects of Exercise on Epilepsy? You Have Another Chance!

 

If you missed our September webinar, you can now watch the recording or read the transcript on our website! September’s free webinar explains the difference between exercise and physical activity, summarizes the health issues faced by many people with epilepsy, and discusses who may benefit from physical activity. You will also hear the current consensus among medical professionals on the safety of different types of physical activity and exercise for people with epilepsy. Finally, viewers will learn practical tips for how people living with epilepsy can safely engage in physical activity.

Watch Recording

 

Check out all of our previous and upcoming webinars here.


CURE Epilepsy Cares Events

We were thrilled to visit Cincinnati for a CURE Epilepsy CARES (Conversations About Research in Epilepsy and Seizures) event last month. This event brought together patients, families, medical professionals, researchers, and others touched by epilepsy to engage in conversation and have their questions about cutting-edge research and epilepsy treatments answered by clinicians. If you weren’t able to attend the event live, you can watch a recording here. Our next CURE Epilepsy CARES event will be held in Baltimore this November. Visit our website to learn more! 

Watch CURE Epilepsy CARES in Cincinnati Event Recording

 


Epilepsy Awareness Day at Disneyland

CURE Epilepsy is excited to join the organizers of Epilepsy Awareness Day at Disneyland (EADDL) on October 31 – November 2. This event includes a free 2-day expo where attendees can learn from some of the leading epilepsy professionals from around the US about the latest research, technological advancements, epilepsy services available to those living with epilepsy and their loved ones, and much more. The event also features an optional third day at Disneyland Park in California where thousands of attendees celebrate Epilepsy Awareness Month.

Join CURE Epilepsy on Tuesday, November 1, when we film an upcoming episode of Seizing Life® with host Kelly Cervantes, live! Please also stop by our booth to learn more about us and share your personal epilepsy message more broadly with the community. 

Learn More

 


SUDEP Webinar Presented by PAME

Join our friends at PAME (Partners Against Mortality in Epilepsy) for their upcoming webinar, SUDEP Communication: Understanding the caregiver perspective and developing a SUDEP conversation guide. This webinar will feature Monica Lemmon, MD, Assistant Professor of Pediatrics within the Division of Pediatric Neurology at Duke University, speaking about the development of a SUDEP conversation guide. This free webinar will take place Tuesday, October 11 from 12-1 pm ET.

Register

 


What’s New from the Seizing Life® Podcast

Working to Overcome Disparities in Epilepsy Care in the Hispanic Community

 

Examine the challenges faced by minority groups in general and the Hispanic community in particular in accessing quality epilepsy care and learn about a program aimed at addressing these issues. 

Watch or Listen

 

 

 

Celebrating 100 Episodes: Community, Impact, and Hope

 

On Seizing Life’s 100th episode, host Kelly Cervantes is interviewed by David Axelrod about turning her family’s epilepsy experience into advocacy and finding hope in the research funded by CURE Epilepsy.

Watch or Listen

 

 

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


The CURE Epilepsy Store

 

Behind on back-to-school shopping? Purchases from the CURE Epilepsy Store can help spread awareness and get you those last-minute necessities like water bottles and t-shirts!

Shop

 

 


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

  • October 19 – SUDEP Action Day
  • October 31-November 2 – Epilepsy Awareness Day at Disneyland
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • November 1-30 – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week
  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • February 13, 2023 – International Epilepsy Awareness Day
  • March 26, 2023 – Purple Day

 

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

Read Megan’s Story

 

CURE Epilepsy Update September 2022

Greetings Epilepsy Community,

September is here and that means we are just a few short weeks away from our 3rd annual Unite to CURE Epilepsy virtual event! Gather your friends and family together to celebrate inspirational stories, advances in research, and so much with members of the epilepsy community throughout the country and around the world. The event will be hosted by ABC 7 Chicago’s Emmy Award-winning anchor Tanja Babich, who has seen how epilepsy can impact family and friends. There are many opportunities to participate in this event including hosting a Watch Party or submitting a video with a message of hope you’d like to share with the epilepsy community. Another reason you might want to submit a video or host a Watch Party is because those are some of the many ways you can earn raffle entries to win a trip to New York City to see Hamilton on Broadway and meet CURE Epilepsy’s dear friend and the star of Hamilton, Miguel Cervantes!

Unite to CURE Epilepsy 2022 is just the start of wonderful events and celebrations dedicated to the epilepsy community this season. Later this fall there are events and special days including Epilepsy Awareness Day at Disneyland, Epilepsy Awareness Month, SUDEP Action Day, and Infantile Spasms Awareness Week.

 

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Unite to CURE Epilepsy

Our 3rd annual Unite to CURE Epilepsy virtual event is approaching quickly! Join us as we premiere the event on September 29 at 7pm ET/4pm PT hosted by Chicago ABC7’s Tanja Babich. We will celebrate advances in epilepsy research, share inspiring stories from the community, and so much more. Don’t forget you can enter our raffle for a chance to win a trip to NYC to see Hamilton on Broadway and meet Miguel Cervantes! Learn more about the raffle and all the fun ways you can win raffle entries (including taking a fun epilepsy quiz, submitting a video for our community, hosting a Watch Party, and more) on our event site! Just want to purchase raffle entries? You can do that too!

Learn More

 


Submit Your Video by End of Day Friday, September 9 to be Part of Unite to CURE Epilepsy

Record a video of yourself for the Faces of Epilepsy segment of the Unite to CURE Epilepsy program! Share your personal message for the epilepsy community and you could see yourself during our virtual event, on social media, and/or on CURE Epilepsy’s website! This is one of the many ways you can earn raffle entries to increase your chance of winning the trip to NYC to see Hamilton on Broadway and meet Miguel Cervantes! Videos are due by the end of the day on September 9!

Learn More

 


CURE Epilepsy Discovery: Developing Precision Medicine Treatments for Genetic Epilepsies: Present Challenges, Recent Scientific Advances, and Future Prospects

Our latest Discovery discusses precision medicine as it relates to epilepsy. Precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.” This concept is being applied to genetic epilepsies, but significant challenges have limited the rate at which basic science has translated into new treatments. Numerous patient advocacy groups, professional societies such as the American Epilepsy Society, governmental institutions, and non-profit funding agencies such CURE Epilepsy, have collectively called for a coordinated and systematic approach to developing new epilepsy treatments. Progress stemming from this call to action could bring a new age of treatments for those with epilepsy, shifting from observational experience to data-driven and patient-centered precision therapy.

Read Discovery

 


Webinar: The Effects of Exercise on Epilepsy

Have you ever wondered how exercise may impact your epilepsy? Join us on Friday, September 23 at 1pm CT for a free webinar that will explain the difference between exercise and physical activity, summarize the health issues faced by many people with epilepsy and discuss who may benefit from physical activity. Viewers will also hear the current consensus among medical professionals on the safety of different types of physical activity and exercise for people with epilepsy. Finally, viewers will learn practical tips for how to safely engage in physical activity for those living with epilepsy.

Register

 


CURE Epilepsy Cares Comes to Cincinnati

CURE Epilepsy CARES (Conversations About Research in Epilepsy & Seizures) is a free, educational event for patients, families, medical professionals, researchers, and all those touched by or interested in learning more about epilepsy. Join us in person on Saturday, September 24 at 10am ET at the University of Cincinnati Gardner Neuroscience Institute. At the event, Cincinnati experts, including Dr. Michael Privitera, the Director of the Epilepsy Center, answer your questions about cutting-edge research and epilepsy treatments.

Register

 


Epilepsy Awareness Day at Disneyland

CURE Epilepsy is excited to join the organizers of Epilepsy Awareness Day at Disneyland (EADDL) this fall on October 31 – November 2. This event includes a free 2-day expo where attendees can learn from some of the leading epilepsy professionals from around the US about the latest research, technological advancements, epilepsy services available to those living with epilepsy and their loved ones, and much more. The event also features an optional third day at Disneyland Park in California where thousands of attendees celebrate Epilepsy Awareness Month. Join CURE Epilepsy at our booth and learn more about us and stay tuned for more information about CURE Epilepsy’s special educational sessions at EADDL.

Learn More

 


 

What’s New from the Seizing Life® Podcast

Seizure Dogs: Predicting Seizures and Providing Comfort

 

Jessa Kenworthy of 4 Paws for Ability provides everything you always wanted to know about seizure alert dogs and how they serve those living with epilepsy.

Watch or Listen

 

 

Medical Cannabis: A Life Changing Journey for Mother and Son

 

In this episode, we take a look at medical cannabis from the perspective of a mother, an advocate, and an educator with a master’s degree in Medical Cannabis Science and Therapeutics  – and in this case, they are all the same person.

Watch or Listen

 

 

Watch these and all of our upcoming Seizing Life episodes here. And don’t forget to tune in for our 100th Seizing Life episode which will premiere Wednesday, October 5!


 

The CURE Epilepsy Store

 

Behind on back-to-school shopping? Purchases from the CURE Epilepsy Store can help spread awareness and get you those last-minute necessities like water bottles and t-shirts!

 

Shop

 


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

  • September – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • 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 Susan’s Story

 

CURE Epilepsy Update August 2022

Greetings Epilepsy Community,

Though it is hard to believe, it is almost time for kids to return to school. If you are a student with epilepsy, or the caregiver of a student with epilepsy, the start of the school year can bring with it a mixture of excitement and anxiety. To help ease any anxiety, we encourage you to consider creating an IEP (Individualized Education Plan) or reviewing your existing IEP, preparing a Seizure Action Plan that can be shared with your school, and coordinating the availability of any prescription rescue medications with your school district, school nurse, and/or teacher

At CURE Epilepsy, we have heard that students with epilepsy are treated unfairly, told seizures aren’t an excuse for unfinished homework, or are even told they are faking seizures to get attention. The better-informed everyone associated with our children’s education can be about epilepsy, the greater the chances are that we will eliminate the stigma often associated with epilepsy, improve children’s school experience, and keep them safe.

While teachers and IEPs can support and champion students with epilepsy during the school day, there is another hero we need to recognize in the epilepsy community this month who helps day in and day out. This month is Seizure Dog Awareness Month, and we will be highlighting seizure dogs, how they do what they do, and their impact on their owners who have epilepsy on an upcoming Seizing Life® episode, so stay tuned!

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Unite to CURE Epilepsy

Our Unite to CURE Epilepsy virtual event is back! Join us as we celebrate advances in epilepsy research, inspiring stories from the community, and so much more. Our 3rd annual Unite to CURE Epilepsy event will premiere on September 29th at 7 pm ET/3 pm PT hosted by Chicago ABC7’s Tanja Babich. We look forward to connecting with everyone within the epilepsy community across the country. And stay tuned for more news about how this year’s event will be even more engaging!

Learn More

 


CURE Epilepsy Discovery: Identifying a Promising Novel Treatment for Infantile Spasms

This latest Discovery covers developments on a promising treatment for infantile spasms (IS). Leveraging findings from his work as part of the CURE Epilepsy Infantile Spasms Initiative (2013-2017) and with additional funding from the National Institutes of Health, Dr. John Swann and his team used a previously developed rat model of IS that mirrors many of this disorder’s symptoms to investigate spasms that result from pediatric brain injuries, such as those suffered during a traumatic birth. Standard treatments for IS work in only approximately 50% of patients and can have severe side effects. The need for additional effective therapies drove Dr. Swann and his team to explore a more effective treatment with fewer or, ideally, no side effects.

Read Discovery

 


Prep for Back to School with IEPs

IEPs (Individualized Education Plans) are developed by teams of parents, school administrators, medical professionals, and child advocates in public schools for children who need accommodation. The IEP is a written legal document that maps out the program and special education instructions, supports, and services that will help children thrive and progress in school. Learn about the IEP development process, the different accommodations you can request, and how to advocate for your child’s education.

Learn More

 


Now on TikTok

 

The wait is over! CURE Epilepsy is now bringing epilepsy education to TikTok. Follow along to learn more about epilepsy and help spread the word.

 

CURE Epilepsy on TikTok

 


CURE Epilepsy Champion Highlight

We are fortunate to have so many amazing CURE Epilepsy Champions working with us to fund research to find a cure. Each champion brings their own unique style to their event whether it be a run/walk, a lemonade stand, or an event full of art and music. Check out what some of our CURE Epilepsy Champions have done and maybe even get ideas on what you would do as a CURE Epilepsy Champion.

Learn More

 


 

What’s New from the Seizing Life® Podcast

Inflammation’s Role in Epilepsy and How It Might be Prevented

 

In this episode, epilepsy researcher Dr. Nicholas Varvel discusses the connection between acquired epilepsy and inflammation in the brain.

Watch or Listen

 

Growing Up with Epilepsy Leads to Making Movies About It

 

Listen as filmmaker Miles Levin discusses growing up with epilepsy and turning his experiences into the award-winning short film “Under the Lights”.

Watch or Listen

 

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


 

The CURE Epilepsy Store

 

Shop the CURE Epilepsy Store and help spread awareness with our CURE Epilepsy merchandise including apparel, car magnets, water bottles, and more.

 

Shop

 


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

  • August 1-31 – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • November 1-30 – 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 Avery’s Story

 

CURE Epilepsy Update July 2022

Greetings Epilepsy Community,

As we enter the dog days of summer, I’m happy to share we’ve further expanded our Understanding Epilepsy resource on our website to include a section on Diagnosing Epilepsy. This new section is a great tool for individuals looking to learn more on how epilepsy is diagnosed, the epilepsy journey, diagnostic tools, EEGs, MRIs, and more. This resource is invaluable to those who are newly diagnosed as well as those who have been living with epilepsy. As science continues to advance, new research is published, and new treatments and tests come online, we will continue to update our online knowledge resources to provide hope and understanding for our community.

Another good resource on the diagnostic journey for epilepsy is our latest Seizing Life® episode with Dr. Doug Nordli from the University of Chicago Medicine. Dr. Nordli lays out a roadmap for parents and caregivers to follow from the initial concern that something is wrong, to getting a prompt neurologist appointment, through diagnostic testing, and the numerous options for both drug treatment and alternative options. Along the way, Dr. Nordli offers advice for communicating with doctors, seeking a second opinion, finding an epileptologist, and accessing quality epilepsy care. We hope these resources are helpful to you and your friends and family within the epilepsy community as we continue our unrelenting search for a cure.

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


Get 15% Off CURE Epilepsy Merch During Our Summer Sale

Shop the CURE Epilepsy Store for branded apparel and accessories during our Summer Sale from June 27-July 10 and get 15% off each item! Show your CURE Epilepsy pride and help spread awareness with our CURE Epilepsy merchandise including apparel, car magnets, water bottles, and more.

Shop Sale

 


Diagnosing Epilepsy Section Now Available on the CURE Epilepsy Website

The Understanding Epilepsy resource section of our website has been expanded to include a Diagnosing Epilepsy section. Learn about how epilepsy is diagnosed, diagnostic tools, how the pediatric diagnostic journey differs from the adult journey, and more. Thank you to our partners SK Life Science for their support.

Explore

 


Make a Positive Impact with Your Amazon Prime Day Purchases

By using AmazonSmile for your Amazon purchases, you can support CURE Epilepsy every time you shop! When you shop through AmazonSmile, 0.5% of your eligible purchases are donated to a nonprofit of your choice. The price you pay for your items is exactly the same and the donation comes directly from Amazon to CURE Epilepsy, so the process of donating couldn’t be easier.

With Amazon Prime Day approaching on July 12-13, now is a perfect time to make CURE Epilepsy your nonprofit of choice on AmazonSmile. Just select CURE Epilepsy as your nonprofit of choice before July 10 to ensure 0.5% of any Amazon Prime Day purchases are donated to CURE Epilepsy.

Support CURE Epilepsy with My Amazon Purchases


CURE Epilepsy Discovery: Investigating Mechanism of the Progression of Epilepsy

 

This latest Discovery highlights a recent study by Dr. Juliet Knowles and her research team at Stanford University that is the first to clearly show that abnormal neuronal activity (in this case, due to absence seizures) can lead to harmful changes in myelination. These changes contribute to the continued progression of epilepsy. Future work in the field will look at the exact molecules and neurotransmitters involved to better characterize the change in myelination. Although more studies are necessary, Dr. Knowles’ CURE Epilepsy funded research suggests that developing treatments to address both the abnormal neuronal activity and the associated abnormal myelination may more effectively prevent seizures and cognitive difficulties.

Read Discovery


Upcoming Treatment Talk Video Premiere

CURE Epilepsy is proud to present our inaugural Treatment Talk, a social-media broadcast highlighting conditions related to epilepsy and options available for treatment of related seizures and their side-effects. This “Treatment Talk” will focus on Lennox-Gastaut syndrome (LGS), a severe form of childhood epilepsy that arises during infancy or early childhood. You will learn about diagnostic criteria for LGS, seizure types and comorbidities associated with LGS, and the use of fenfluramine to reduce seizures associated with LGS.

Our Treatment Talk will premiere on the CURE Epilepsy Facebook page on July 25 at 12 pm CST.  Be sure to follow our Facebook page to get updates on this inaugural event. This talk is supported through a partnership with UCB, Inc.

Follow CURE Epilepsy on Facebook


Sign a Card to Celebrate Seizing Life’s 100th Episode

The Seizing Life podcast is preparing to celebrate its 100th episode! To recognize the amazing contribution that this podcast has made within the epilepsy community, we have created a celebratory card that will be presented to host Kelly Cervantes during the filming of the 100th episode. All Seizing Life viewers are welcome to sign this card and share your appreciation.

Sign the Card

 


Coming this Fall: UNITE to CURE Epilepsy

Stay tuned for more information on our UNITE to CURE Epilepsy virtual event which will take place in late September. We look forward to connecting with everyone within the epilepsy community across the country for our 3rd virtual event!

 

 

 


CURE Epilepsy Statement on the Importance for Comprehensive Reproductive Healthcare for People with Epilepsy

 

As a non-profit organization devoted to the health and well-being of people with epilepsy, CURE Epilepsy believes that access to comprehensive reproductive healthcare is critically important for people of childbearing age who have epilepsy.

 

 

Read Our Statement

 


 

What’s New from the Seizing Life® Podcast

A Parent’s Guide to Your Child’s Epilepsy Diagnosis and Treatment

Dr. Doug Nordli, Chief of Pediatric Neurology at UChicago Medicine, provides a guide to help parents of children with epilepsy navigate their child’s diagnostic and treatment journey. Dr. Nordli lays out a roadmap for parents to follow from the initial concern that something is wrong, to getting a prompt neurologist appointment, through diagnostic testing, and evaluation of the numerous options for both drug and alternative treatments. Along the way, Dr. Nordli offers advice for communicating with doctors, seeking a second opinion, finding an epileptologist, and accessing quality epilepsy care.

Watch or Listen

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


 

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

  • June 23 – International Dravet Syndrome Awareness Day
  • August 1-31 – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • November 1-30 – 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 Kajal’s Story

 

CURE Epilepsy Update June 2022

Greetings Epilepsy Community,

June is a month of celebrations. Summer is finally here, students have graduated high school and college, Pride Month is underway, and Juneteenth is just around the corner. At CURE Epilepsy we are proud to recognize and celebrate these events with our community. We believe that the world is a better place because of the diversity within it, and that diversity in all of its forms creates a stronger society.

The epilepsy community is lucky to have so many researchers, clinicians, and healthcare professionals who dedicate their lives to epilepsy research, treatment, and care from diverse and varied backgrounds. We know that the therapies and cures of tomorrow will be the result of the committed efforts of today’s researchers and scientists.

CURE Epilepsy is privileged to play a critical role in this incredible community, funding over 270 research grants to date as we search for understanding and cures. To do this, we rely on the generosity of our amazing donors and champions. Last week, we raised over $1.9 million at our 2022 Annual Chicago Benefit. This $1.9 million will go to funding the innovative research grants that we will fund in 2022 to advance and accelerate our mission to find a cure for epilepsy.

Speaking of epilepsy research, we are delighted to share our latest CURE Epilepsy Discovery which highlights research conducted by Dr. Nuria Lacuey who hopes to use the valuable results to develop a device that will stimulate critical areas of the brain following seizures to enhance breathing and avoid its cessation, thereby preventing SUDEP (Sudden Unexpected Death in Epilepsy). As SUDEP is one of the most devastating results of epilepsy, it is inspiring to see the progress we are making in understanding the biological mechanisms that occur so that we can ultimately prevent it. Each day, we are one day closer to a cure.

Through research there is hope.


In this CURE Epilepsy Update, please find information on:


We Raised Over $1.9 Million for Epilepsy Research at CURE Epilepsy’s 2022 Annual Chicago Benefit

Thanks to the generous and committed members of our CURE Epilepsy community, we raised over $1.9 million for epilepsy research at our Annual Chicago Benefit last week. It was an incredible evening celebrating inspiring stories from the community and promising advancements in research since we last gathered together in 2019. Thank you again to our Host Committee, sponsors, donors, and volunteers. If you would still like to make a donation to help us surpass our goal, you can visit the event’s donation page here.

Donate to Epilepsy Research

 


CURE Epilepsy Welcomes Two New Board Members

We are excited to welcome two additions to our Board of Directors, Hannah Whitten and Steve Austin.

Hannah Whitten was introduced to epilepsy by her brother Dylan, who lived with epilepsy from the age of two until he passed away in 2017 from Sudden Unexpected Death in Epilepsy (SUDEP). Hannah is passionate about finding a cure for epilepsy, so no other family needs to experience the loss hers has. Hannah plans on being involved in the fight against epilepsy for the rest of her life.

 

 

Steve Austin has been a supporter of CURE Epilepsy for many years, most recently serving on our Development and Marketing Communications Committee. Having lived with epilepsy since he was 12, he has a passion to help others living with this condition. Steve looks forward to serving on the CURE Epilepsy Board and continuing to support our mission to find a cure.

Learn more about Hannah, Steve, and other members of our Board on our website.

See our Board

 


CURE Epilepsy Discovery: Identifying Human Brain Regions that Regulate Breathing as Eventual Targets for Direct SUDEP Intervention

We are thrilled to share that our latest CURE Epilepsy Discovery shows promise in being able to create a device that can prevent SUDEP (Sudden Unexpected Death in Epilepsy). Read about Dr. Nuria Lacuey and her team who sought to identify specific parts of the brain essential for regulating breathing, a fundamental function whose failure following a seizure is primarily responsible for Sudden Unexpected Death in Epilepsy (SUDEP).

Read the Discovery

 


Register Now for Our Free Webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research

According to recent studies, Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age. This webinar will discuss what parents and caregivers of children with rare epilepsies should know about SUDEP prevention and ways to mitigate risk. All presenters, including a physician and a parent/caregiver of a child diagnosed with a rare genetic epilepsy, will share ideas on how to discuss SUDEP with doctors and how to take steps to reduce the risk of SUDEP.

Register

 


See the Latest Impacts in Our Researching to CURE Epilepsy Spring 2022 Report
In case you missed it when it was fresh off the press last month, check out our latest Researching to CURE Epilepsy Spring 2022 report! This issue has a special focus on SUDEP (Sudden Unexpected Death in Epilepsy) and highlights our many achievements in SUDEP research as well as inspiring stories from individuals in the epilepsy community, exciting research developments, and more.

Read Now

 


Slots are Filling Up! Sign Up Today to Join Team CURE Epilepsy at the LifeTime Chicago Triathlon

Looking to demonstrate your prowess in not just one, but three sports? What about raising money to support epilepsy research? Look no further! Sign up today and help support CURE Epilepsy by participating in the 2022 LifeTime Chicago Triathlon as part of Team CURE Epilepsy on Saturday, August 27 – Sunday, August 28. No matter what distance you are looking to complete (international or sprint), we have secured a limited number of charity spots for individuals who want to swim, bike, and run for research through the most iconic spots in our hometown.

Join Team CURE Epilepsy

 


What’s New from the Seizing Life® Podcast

Rare Epilepsy: Collaborating for Advocacy, Research, and Community

Yssa DeWoody of Ring14 USA and the Rare Epilepsy Network (REN) joins us to provide a primer on rare epilepsies. Yssa explains what rare epilepsies are and how they are diagnosed, potential treatments, and the particular challenges for those impacted. Yssa also recommends resources including organizations, support groups, and clinical trials within the rare epilepsy community.

Watch or Listen

 

Epilepsy Stories and the Research Making a Difference

In this special episode, we present short videos about three key areas of epilepsy research on which we focus: Post-Traumatic Epilepsy (PTE), Sudden Unexpected Death in Epilepsy (SUDEP), and Refractory (or Drug-Resistant) epilepsy. Each video tells the personal epilepsy story of a community member and offers information and insights from a CURE Epilepsy-funded researcher working in that area.

Watch or Listen

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


CURE Epilepsy Store

Show your CURE Epilepsy pride and help raise awareness about the need to find a cure for epilepsy with everyday items from our CURE Epilepsy Store. From water bottles and car magnets to clothing, we have something for everyone’s summer needs.

Shop

 

 


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

  • June 23 – International Dravet Syndrome Awareness Day
  • August 1-31 – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • November 1-30 – 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 Sean’s Story