Announcing the 2018 Post-Traumatic Epilepsy Initiative Grantees

Announcing the grant recipients in CURE’s Post-Traumatic Epilepsy Initiative! Read about this team’s innovative projects below:

Post-traumatic epilepsy (PTE) is a frequent and debilitating complication of traumatic brain injury (TBI). Over 40% of combat troops who suffer severe TBI will develop PTE.

Having secured a $10 million grant from the US Department of Defense, CURE has launched an unprecedented Post-Traumatic Epilepsy Initiative. This initiative is a team science, multi-disciplinary program that will expand the knowledge around the types of injuries that predispose the brain to epilepsy, as well as a develop new models to study epilepsy that results from injury.

Meet CURE’s pioneering Post-Traumatic Epilepsy Initiative team:

Victoria E. Johnson, MBChB, PhD

University of Pennsylvania

Dr. Johnson will characterize the relationship between the detrimental neural changes which can follow TBI and the development of PTE. These changes include chronic leakage of the blood-brain barrier, neuronal degeneration, and gliosis. The research team will utilize tissue from humans following TBI, as well as novel models of TBI.

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Harald Sontheimer, PhD

Virginia Tech

Dr. Sontheimer and his team of collaborators have identified the need for additional animal models of PTE. The team’s hope is that identifying alternative animal models will lead to the discovery of new PTE biomarkers and, eventually, to novel treatments. To identify new animal models, Dr. Sontheimer’s team plans to investigate how TBI leads to PTE in a new mouse model compared to an established one.

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Kevin Staley, MD

Harvard Medical School

Dr. Staley will test if changes in the brain’s neuronal support system after TBI alter the balance of inhibitory and excitatory neurotransmission. His team is also set to explore why PTE following TBI is often difficult to treat. Using highly innovative imaging techniques, Dr. Staley aims to provide new insight into how PTE develops and new methods to identify high-risk patients.

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Kevin Wang, PhD

University of Florida

Dr. Wang has developed a robust rat model of penetrating TBI to understand how this type of injury can lead to PTE. His team will compare rats that develop PTE to those that do not. The goal is to uncover the unique chemical and molecular processes which lead to PTE following a penetrating TBI. These findings could provide new areas of focus and potential biomarkers for developing treatments.

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Clinical Trial: A Study to Assess the Safety and Efficacy of Lacosamide Versus Placebo (a Pill Without Active Medication) in Patients With Idiopathic Generalised Epilepsy Who Are Already Taking Anti-epileptic Medications (VALOR)

The VALOR study is investigating whether Lacosamide (Vimpat®)—when taken with current anti-epileptic medicine—helps decrease the number of seizures patients experience. This study enrolls children and adults who are at least 4 years or older, have epilepsy with primary generalized tonic-clonic seizures, had at least 2 seizures in the past 12 weeks, and are on a stable dose of anti-epileptic medicines. Patients have a 50% chance of receiving placebo; they have the opportunity to receive Lacosamide for another two years afterwards in an open-label extension study. The study is running in a total of 23 countries, including the United States.

Eligibility Criteria:

Ages Eligible for Study: 4 Years and older (Child, Adult, Older Adult)
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No

Inclusion Criteria:

  • Subject with a confirmed diagnosis at least 24 weeks prior to Visit 1 and a disease onset prior to 30 years of age, consistent with idiopathic generalized epilepsy (IGE) experiencing primary generalizedtonic-clonic (PGTC) seizures (Type IIE) that are classifiable according to the International League Against Epilepsy (ILAE) Classification of Epileptic Seizures (ILAE, 1981)
  • Subject has 3 PGTC seizures during the 16-week Combined Baseline (12-week Historical Baseline plus 4-week Prospective Baseline)
  • If a brain magnetic resonance imaging (MRI)/computed tomography (CT) scan has been performed, there must be no evidence of any progressive abnormality or any lesion likely to be associated with partial-onset seizures
  • Subject has been maintained on a stable dose regimen of 1 to 2 non-benzodiazepine marketed Antiepileptic drugs (AEDs) OR 1 to 3 AEDs (with 1 AED identified as a benzodiazepine) for at least 28 days prior to Visit 1 with or without additional concurrent stable Vagus nerve stimulation (VNS)
  • Subjects are required to have had an electroencephalogram (EEG) report consistent with IGE (eg, generalized 3Hz epileptiform discharges and a normal EEG background) confirmed by a Central Reviewer

 

Exclusion Criteria:

  • History of partial onset seizures or EEG findings indicating partial onset seizures
  • Symptomatic generalized epilepsy, e.g. Lennox-Gastaut Syndrome
  • Lifetime history of suicide attempt, or suicidal ideation in past 6 months
  • Women of child bearing potential must practice contraception according to protocol requirements
  • Regular use of clozapine, monoamine oxidase (MAO-A) inhibitors, barbiturates (for indication other than epilepsy) within 28 days prior to Visit 1
  • Use of Vigabatrin within the last 6 months

Mayor Emanuel Interviews Singer, Actor and “Hamilton” Star Miguel Cervantes on “Chicago Stories”

On this week’s episode of “Chicago Stories” the star of Chicago’s “Hamilton” Miguel Cervantes gives Mayor Emanuel his take on the smash-hit musical, shares the story of his hard-won career, and talks about his biggest role of all as “Dad” and raising awareness for childhood epilepsy.

Born and raised in Dallas, Miguel wasn’t interested in theater growing up, at least not at first, but an audition for a local production in sixth grade planted the first step to a journey that took him to Dallas’ Booker T. Washington High School for the Performing Arts, Boston’s Emerson College, and then finally the bright lights of Broadway?—?or so he thought.

“When I graduated I went right to New York as the big fish in my school,” Miguel said. “I thought: ‘this is great, this is easy, this is going to be awesome,’ and then crash and burn.”

As Miguel told Mayor Emanuel, he wasn’t ready. (Though, as Mayor Emanuel told Miguel, the real problem was New York wasn’t ready for him.)

After a brief return home, Miguel hooked up with friends in Boston and embarked on an artistic rebirth that eventually brought him back to the Big Apple, but this time to a mix of Broadway, Off-Broadway, and touring productions.

“Opportunity comes at its own pace,” Miguel said, “and sometimes your opportunity is not when you’re 21 when you think you’re ready?—?that may not be the right time for you.”

For Miguel, opportunity came in a big way in 2016 when the mega-hit “Hamilton” was looking to recast its famous title role. Immediately once auditions started, Miguel could tell something was different.

“Three weeks later, after four auditions, I called my wife and said ‘I think we’re moving to Chicago,’” Miguel said.

Miguel’s biggest role of all though has been as “Dad” to his six-year-old son and two-year-old daughter Adelaide, who at seven-months-old was diagnosed with epilepsy just as “Hamilton” was coming into his life.

As devastating as childhood epilepsy is, the news got worse after doctors discovered Adelaide had “infantile spasms,” a particularly devastating form of epilepsy that can lead to severe developmental and cognitive delays.

Not knowing where to go or who to turn to, Miguel and his wife Kelly connected with the Chicago-based Citizens United in Research for Epilepsy, or “CURE,” the nation’s largest non-governmental organization funding epilepsy research.

“We got here terrified, just absolutely terrified,” Miguel told Mayor Emanuel. “And we come to Chicago and the folks at CURE wrapped their arms around us and said ‘we got you here.’”

Since then both Miguel and Kelly have become passionate advocates for epilepsy awareness through CURE, including their My Shot at Epilepsy fundraising campaign and the #MyShotAtEpilepsy Challenge.

Today, 3.4 million Americans suffer from epilepsy, including 470,000 children, while an estimated 65 million people currently life with epilepsy worldwide. Meanwhile, research is still underfunded, and comprehensive treatment for families like the Cervantes’ is still a long way off.

“What we say is we may not be able to do so much for [Adelaide]—what we can actually achieve in her life may be limited,” Miguel said, “but if we raise our voices and do everything that we can, at some point some parents will not have to go through what we have to go through.”

Be sure to listen to the full episode as Miguel and Mayor Emanuel talk about the impact of “Hamilton,” Chicago’s theater community and culture of giving back, and where Miguel hopes opportunity takes him next.

You can check out the full episode on iTunesSoundCloud, and Spotify.

Hari Ravichandran Launches Foundation With Inaugural Gift To Citizens United for Research in Epilepsy (CURE)

$150,000 Commitment in Support of 20th Annual Benefit and ‘Taking Flight’ Research Award

BOSTON, MA (August 16, 2018) – Hari Ravichandran, the CEO and Founder of Jump Ventures, a scalability infusion firm, today launched the Ravichandran Foundation by announcing its first financial commitment of $150,000 to benefit Citizens United for Research in Epilepsy (CURE) and their initiatives to find a cure for epilepsy.

For 20 years, CURE has been at the forefront of the dramatic shift in the epilepsy research community from simply treating seizures to enhancing understanding of underlying mechanisms and causes, so that cures and preventative strategies can be found. CURE’s research program is cutting-edge, dynamic and responsive to new scientific opportunities and directions through both investigator-initiated grants and unprecedented scientific programs and initiatives.

“The Ravichandran Foundation is dedicated to ensuring we make meaningful contributions that enable the communities where we live and work to thrive by improving health, promoting education and empowering youth locally and globally,” said Hari Ravichandran. “Our goal is to make contributions that also leave a legacy of positive social impact. I can’t think of a better way to do that, than by supporting the efforts of young researchers and their mission to find a cure for epilepsy.”

The Ravichandran gift will directly support CURE’s ‘Taking Flight’ research award which facilitates a promising epilepsy research project and promotes the career of a young epilepsy investigator, allowing them to develop a research focus independent of their mentor(s).

“As CURE prepares to recognize the advancements made by epilepsy researchers over the past 20 years, I’m reminded that many of them were initially recipients of a CURE Taking Flight Award. So, I’m very grateful to Hari for his generosity and foresight in funding a next generation researcher whose research could be groundbreaking. Funding young researchers inspires them to devote their careers to studying epilepsy and is crucial to our pipeline of emerging discoveries,” said CURE founder Susan Axelrod.

This contribution will also sponsor CURE’s 20th Annual Benefit, which will be held in Chicago on October 15, 2018 at Navy Pier.  The CURE Benefit will showcase the organization’s 20 years of impact and emerging discoveries.

ABOUT THE RAVICHANDRAN FAMILY FOUNDATION
Based in Boston, Massachusetts, the Ravichandran Foundation is a philanthropic organization founded by Hari Ravichandran, a technology entrepreneur and the CEO and Founder of Jump Ventures, a scalability infusion firm. The foundation is committed to improving health, promoting education and empowering youth locally and globally. For more information visit: www.ravichandranfoundation.org.

ABOUT CURE
The mission of Citizens United for Research in Epilepsy (CURE) is to find a cure for epilepsy, by promoting and funding patient-focused research.  Since its inception in 1998, CURE has raised over $50 million to advance its goal of no seizures and no side effects. To date, CURE has awarded more than 220 cutting-edge research projects in 15 countries around the world. CURE is the leading non-governmental agency fully committed to funding research in epilepsy. For information about CURE, please visit our website at: www.CUREepilepsy.org or contact us at: info@CUREepilepsy.org.

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MEDIA CONTACTS:
Lark-Marie Anton
Ravichandran Foundation  
(781) 552-3259
lark.anton@ravichandranfoundation.org

Michael Organ
CURE
(312) 255-1801
michael.organ@cureepilepsy.org

Students Impacted by Epilepsy Use Scholarships to Become Agents of Change Across the US

Citizens United for Research in Epilepsy (CURE) and Lundbeck have announced the newest cohort of Education Enrichment Fund (EEF) Scholars for 2018. These 10 new scholars have all been personally impacted by epilepsy and, collectively, will receive nearly $50,000 to advance their education while bringing greater awareness to epilepsy.

The EEF Scholarships—made possible by generous support from Lundbeck—award a one-time scholarship (up to $5,000) to those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship, which is in its third year, covers tuition, books, and academic materials and supports coursework advancing personal knowledge in research, health education and advocacy in relation to epilepsy.

“As a patient-centered and research driven organization, CURE greatly appreciates Lundbeck’s generous support of the Education Enrichment Fund Scholars Program,” said Stacey Pigott, Chair of CURE’s Research Committee. “This year’s recipients are all incredibly deserving with their personal connection to epilepsy and shared goal of furthering their education to enact positive change within the broader epilepsy community.”

One scholar, after serving as a nurse for seven years in the U.S. Army, was diagnosed with epilepsy caused by a brain tumor. Her personal battle towards recovery has led her to pursue a career as a Psychiatric Mental Health Nurse Practitioner.

Another scholar has spent ten years battling for her son who was diagnosed with epilepsy at the age of four. Her triumphs and tragedies have motivated her to pursue a career as a Family Nurse Practitioner so she can advocate for others who are battling this disorder.

Other awardees include an aspiring pediatric neurologist seeking to combat the effects of epilepsy he has witnessed in his older brother; a student living with epilepsy himself and striving to become a neurologist; and a teacher in the peace corps seeking to advance epilepsy research to treat not only her own disorder, but the disorder of the students in her classroom.

“This is the third round of Education Enrichment Fund Scholars and, once again, I am amazed at the recipients’ passion, hopefulness and determination to make a difference in the lives of others who are living with epilepsy,” said Lorena Di Carlo, Vice President & General Manager, Neurology, at Lundbeck. “This initiative has taught us so much about the strength of the epilepsy community, and we are proud to be a part of it.”

Launched in 2016 with just three scholars, the EEF Scholarship program has more than tripled in 2018 and has supported nearly 20 scholars since the program’s inception.
2018 winners include:

 

Click to learn more about each scholar.

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About CURE

The mission of Citizens United for Research in Epilepsy (CURE) is to find a cure for epilepsy, by promoting and funding patient-focused research.  Since its inception in 1998, CURE has raised over $50 million to advance its goal of no seizures and no side effects. To date, CURE has awarded more than 220 cutting-edge research projects in 15 countries around the world. CURE is the leading nongovernmental agency fully committed to funding research in epilepsy.

For information about CURE, please visit our website at www.CUREepilepsy.org or contact us at info@CUREepilepsy.org.

About Lundbeck

H. Lundbeck A/S (LUN.CO, LUN DC, HLUYY) is a global pharmaceutical company specialized in psychiatric and neurological disorders. For more than 70 years, we have been at the forefront of research within neuroscience. Our key areas of focus are depression, schizophrenia, Parkinson’s disease and Alzheimer’s disease.
An estimated 700 million people worldwide are living with psychiatric and neurological disorders and far too many suffer due to inadequate treatment, discrimination, a reduced number of working days, early retirement and other unnecessary consequences. Every day, we strive for improved treatment and a better life for people living with psychiatric and neurological disorders — we call this Progress in Mind.

Read more at www.lundbeck.com/global/about-us/progress-in-mind.

Our approximately 5,000 employees in more than 50 countries are engaged in the entire value chain throughout research, development, production, marketing and sales. Our pipeline consists of several late-stage development programs and our products are available in more than 100 countries. Our research center is based in Denmark and our production facilities are located in Denmark, France and Italy. Lundbeck generated revenue of DKK 17.2 billion in 2017 (EUR 2.3 billion; USD 2.6 billion).

In the U.S., Lundbeck employs nearly 1,000 people focused solely on accelerating therapies for brain disorders. With a special commitment to the lives of patients, families and caregivers, Lundbeck U.S. actively engages in hundreds of initiatives each year that support our patient communities. For additional information, we encourage you to visit our corporate site at www.lundbeck.com/us and connect with us on Twitter at @LundbeckUS.

Stopping Acquired Epilepsy Before It Starts? CURE Researcher Identifies a Possible Biomarker

Early intervention, in response to rising biomarker levels, could delay the onset of epilepsy, block the progression of the disease, and eliminate impairments in memory

(Chicago – February 6, 2018) New research, funded by Citizens United for Research in Epilepsy (CURE), has discovered a ‘smoking gun’ biomarker that could result in treatments that stop some epilepsies before they even start.

“Being able to identify that a person is likely to develop epilepsy following a brain injury is one of the most important focus areas in modern-day epilepsy research,” says Dr. Laura Lubbers, CURE’s Chief Scientific Officer. “With 3.4 million Americans suffering from epilepsy and seizures in the U.S., this discovery of a predictive biomarker for a certain form of epilepsy could prevent unpredictable seizures from taking over the lives of millions of Americans and their families.”

Using a rat model of brain injury and epilepsy, CURE-funded researcher Dr. Annamaria Vezzani and her team at the Mario Negri Institute for Pharmacological Research in Milan, Italy have identified that, prior to the development of epilepsy, high levels of the protein high-mobility group box 1 – also known as HMGB1 – have been found in both the brain and blood of rats. This means that high levels of the biomarker HMGB1 may predict the impending onset of epilepsy.

The CURE-funded research team also discovered that a combination of existing medications not only prevent an increase in HMGB1 levels, but delay the onset of epilepsy, halt the disease’s progression, and eliminate memory impairments associated with epilepsy.

“This discovery suggests that early intervention could slow, or potentially stop, the development of epilepsy in those at risk,” says Dr. Lubbers. “Epilepsy costs the United States approximately $15.5 billion each year, and prevention could result in ripple effects that go far beyond the millions who may receive early treatment.”

HMGB1 is normally released in the brain in response to neuroinflammation, the brain’s response to injury. Targeting the neuroinflammation that leads to increased HMGB1 with drugs that are already in clinical use could create an entirely new therapeutic area to prevent epilepsy from developing or improve its outcomes.

“With this research, Dr. Vezzani and her team have provided hope that a treatment for preventing acquired epilepsy before it occurs is on the horizon,” says CURE CEO Kate Carr. “We thank both Dr. Vezzani as well as our supporters who have made such research possible through their generous donations.”

CURE Taking Flight and Innovator Awards accepting applications

CURE is now accepting LOIs for its first 2018 grant cycle. These grants include:

  • Innovator Award – A grant of $50,000 paid over one year
  • Taking Flight Award – A grant of $100,000 paid over one year

 

The deadline for both of these grants is January 8, 2018 at 9pm Eastern.

Full Key Cycle 1 timeline details are below:

Activity Date
Letter of Intent Deadline Monday, January 8th, 2018 – 9pm ET
Full Application Invitations Wednesday, February 21st, 2018
Full Application Deadline Wednesday, March 28th, 2018 – 9pm ET
Anticipated Award Announcement July 2018
Anticipated Project Start Date September 2018

 

For more information or to apply, interested parties should visit CURE’s Grant Opportunities webpage.

CURE and Lundbeck Announce 2017 Education Enrichment Fund Scholars

CHICAGO, IL – Citizens United for Research in Epilepsy (CURE) and Lundbeck have announced the naming of six new Education Enrichment Fund (EEF) Scholars.

The EEF Scholarships—made possible by generous support from Lundbeck—award a one-time scholarship (up to $5,000) to cover tuition, books, and course materials for those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship is to be used toward coursework advancing personal knowledge in research, health education, advocacy and/or awareness in relation to the recipient’s experiences with epilepsy.

Launched last year by CURE and Lundbeck with three scholars, the EEF Scholarship program has doubled in 2017 to fund six scholarships. The 2017 winners are:

  • Drake Abramson, University of Indianapolis
  • Jacqueline Bridges, University of Pittsburgh
  • Brianna Brodeur, University of Illinois—Champaign
  • Jordan Kaufman, Rollins College
  • Casey Nunes, Benedictine University
  • Nolan Wu, Trinity University

 

The 2017 scholars include students personally living with epilepsy and related syndromes, and ones caring for family members impacted by epilepsy. The scholars’ academic interests include neuroscience, biology, and public health—most with an eye to studying epilepsy.

“I am so inspired by the incredible individuals who have received the Education Enrichment Fund scholarships,” said Lorena Di Carlo, Vice President & General Manager, Neurology, at Lundbeck. “They have each taken adversity and channeled it into something positive. Lundbeck is honored to support them in their pursuit to help people who are living with epilepsy.”

“At CURE, we understand it’s vital to make a difference today in the lives of those impacted by epilepsy, and also to inspire and support the new generation of researchers and scholars that will hopefully end this disease,” said Kate Carr, CEO of CURE. “The EEF Scholars program helps us achieve both of these goals. Because of the strong support from Lundbeck, we are able to make a meaningful impact in the lives of these exciting young scholars.”

Wiley and ILAE Partner on a New Open Access Journal for Epilepsy Research

Hoboken, NJ – John Wiley and Sons, Inc., and the International League Against Epilepsy (ILAE) announced today the launch of a new international, open access publication, Epilepsia Open.

Epilepsia Open is an international, peer-reviewed journal from the International League Against Epilepsy. The mission of the journal is to make original epilepsy research on all aspects of epilepsy widely available through open access publication. More specifically, Epilepsia Open will fill a need in comprehensive epilepsy research by also including early, preliminary studies that may provide new directions for clinical and laboratory research as well as well performed negative and failure to confirm studies.

The journal launches with its first article, “Classification of the epilepsies: New concepts for discussion and debate.” This article intends to update the community on the work being done by the Task Force on the Classification of the Epilepsies and to solicit comments and criticism from readers.

Following this, the journal will cover: clinical, basic and translational research; clinical trials including pilot trials that may provide new insights or directions; well performed clinical trials that are negative or fail to confirm previous studies; original imaging and pathology research; innovative epidemiology studies; societal and public health impact studies; and clinical implications of basic science in epilepsy.

The journal joins ILAE’s portfolio of journals, including the highly ranked Epilepsia and Epileptic Disorders.

“Wiley is proud to extend our relationship with the ILAE into open access publishing and to expand through Epilepsia Open the portfolio of this valued partner,” said Shawn Morton, Director of Society Journal Publishing, Health Sciences at Wiley. “We expect that this new journal will amplify the work published in Epilepsia and Epileptic Disorders and that these three publications in concert will further accelerate and facilitate the transfer of research findings into clinical practice.”

Epilepsia Open will allow us to address the broader needs of the ILAE constituency,” said Emilio Perucca, President of the ILAE. “By publishing in Epilepsia Open, authors can ensure that their research is readily accessible to the entire scientific and lay community, thereby enhancing the global visibility of their work.”

Epilepsia Open is creating a unique forum for the rapid open access publication of epilepsy research, reviews, news and commentaries,” said Dieter Schmidt, co-Editor-in-Chief of Epilepsia Open. “We are committed to facilitating and invigorating a robust and successful publication pipeline that will improve translational research and health science in epilepsy.”

Epilepsia Open has four Editors-in-Chief: Dr. Aristea Galanopoulou is a Professor at the Albert Einstein College of Medicine; Dr. Gary Mathern is the Director of Epilepsy Surgery and Professor in Residence for neurosurgery at the Brain Research Institute UCLA; Dr. Dieter Schmidt is Emeritus Professor of Neurology of the Free University of Berlin; and Dr. Xuefeng Wang is the Vice Director of the Department of Neurology and Professor at Chongqing Medical University China.

In addition to its distinguished Editors-in-Chief, Epilepsia Open has a diverse list of associate editors and editorial board members from around the globe to represent the full international community for epilepsy research.

All articles in Epilepsia Open will be published under a Creative Commons license on Wiley Online Library. Authors with open access mandates from funders will be fully compliant when publishing with this journal. A publication fee will be payable by authors on acceptance of their articles. Waivers and discounts are available to authors in developing countries and under special circumstances. Authors affiliated with, or funded by, an organization that has a Wiley Open Access Account can publish without directly paying any publication charges.

The journal is open to submissions now and plans to publish the first issue online in September 2016. For more information, visit www.epilepsiaopen.com.

Acorda Therapeutics, Inc. Announces Discontinuation of PLUMIAZ™ (diazepam)

WASHINGTON, D.C.— Acorda Therapeutics, Inc. announced May 20 it will discontinue development of PLUMIAZ™ (diazepam) Nasal Spray, an investigational therapy which was being studied for the treatment of seizure clusters in people with epilepsy. Data from ongoing clinical trials do not demonstrate its bioequivalence to Diastat® gel, which is needed for New Drug Applications (NDA).

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