CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Research News  Epilepsy News 
"Autoimmune Causes of Epilepsy" - A Free Audio Conference May 7, 2014

ECoE Healthcare Providers FY14 Education Audio Conference

“Autoimmune Causes of Epilepsy”
Wednesday, May 7, 2014

The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing continuing education to VA providers to improve the health, well-being, and clinical care of Veteran patients with epilepsy and other seizure disorders.

1:00 PM – 2:00 PM Eastern Time
10:00 AM – 11:00 AM Pacific Time

Dial-in:  1-855-767-1051
Access Code:  81024195

or Access the Online Meeting:
https://meet.RTC.VA.GOV/sean.gamble/26RDSBWT

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CURE Epilepsy

Research News 
Courtagen to Provide Genetic Profiling of Children with Intractable Epilepsy to Support Clinical Developments with Cannabidiol

Using the latest next-generation sequencing technologies, Courtagen is collaborating with various academic centers and US physicians to profile the genomes of intractable epilepsy patients to stratify response to cannabidiol (CBD).

Courtagen Life Sciences, an innovative molecular information company, announces a new comprehensive epilepsy sequencing test designed to sequence 489 genes known to be involved in epilepsy, antiepileptic drug metabolism, and endocannabinoid regulation. This panel is to be the first deployed in the genetic analysis of over 100 children suffering from intractable epilepsy syndromes.

The FDA has granted orphan drug designation for GW Pharmaceuticals’ Epidiolex®, the product candidate that contains plant-derived cannabidiol (CBD) as its active ingredient for use in treating children with Dravet syndrome, as well as Lennox-Gastaut syndrome, two rare and severe forms of infantile-onset, genetic, drug-resistant epilepsy syndromes. Epidiolex is an oral liquid formulation of a highly purified extract of CBD, a non-psychoactive molecule from the cannabis plant. The FDA has approved expanded access to the Investigational New Drug (IND) to several independent physicians in the U.S. in order to allow treatment of approximately 125 pediatric epilepsy patients with Epidiolex.

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CURE Epilepsy

WEBINAR: Epilepsy-Related Mortality: The Untold Toll on Public Health

Sign up now for this April 3 webinar. Space is limited.

Most people with epilepsy live a full and healthy life. However, people can die from epilepsy. Some people with epilepsy may lose their lives from accidents, drowning, suicide or the underlying cause of their condition, such as tumors or genetic syndromes. The leading cause of epilepsy-related death is believed to be SUDEP (Sudden Unexpected Death in Epilepsy).

During this webinar you will learn about the epidemiology of mortality in epilepsy, including the kinds or mortality data the CDC collects and how they collect it. We will present the most up-to-date statistics on epilepsy mortality in the U.S. and what this means for people living with epilepsy. You will also learn about some of the efforts to collect more accurate data, including the Sudden Death in Young Registry. We will conclude this presentation with highlights of what to expect from the Partners Against Mortality in Epilepsy (PAME) 2014 meeting and why we have expanded the content to include epilepsy mortality more broadly in addition to our focus on SUDEP.

Date: April 3, 2014
Time:
Eastern: 3:30 PM
Central: 2:30 PM
Mountain: 1:30 PM
Pacific: 12:30 PM

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CURE Epilepsy

Epilepsy News 
ECoE Sponsors a Free Audio Conference March 19 - “Diagnosis and Management of Status Epilepticus”

ECoE Healthcare Providers FY14 Education Audio Conference
Sponsored by Epilepsy Centers of Excellence & Employee Education System

“Diagnosis and Management of Status Epilepticus”
Wednesday, March 19, 2014

1:00 PM – 2:00 PM Eastern Time
10:00 AM – 11:00 AM Pacific Time

The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing continuing education to VA providers to improve the health, well-being, and clinical care of Veteran patients with epilepsy and other seizure disorders.

Dial-in:  1-855-767-1051
Access Code:  81024195

Read more: Click here to read the full article

CURE Epilepsy

CURE News  Research News 
Registration is now open for the 2014 PAME Conference!

June 19-22, 2014
Hyatt Recency, Minneapolis

The goal of this three-day learning event is to prevent mortality in epilepsy through a rigorous scientific meeting.

All clinicians, researchers, families and people who are impacted by epilepsy and interested in learning more about SUDEP and epilepsy mortality should attend.

More info and to register: Download the Flyer

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CURE Epilepsy

CURE News  Research News 
Epilepsy Research Grants Awarded By Cure After Receiving Record-High Number Of Applications

February 13, 2014, Chicago, IL – After receiving a record-high 200 plus applications in 2013, Citizens United for Research in Epilepsy (CURE) is proud to announce its six research grant recipients for the Taking Flight and Innovator awards.

The surge in applications is credited to CURE’s ongoing efforts to drive the epilepsy research agenda, funding innovative science not currently being explored by other institutions.

“This was the first year we were unable to fund all of the grants we would have liked to,” said Dr. Steve White, research director for CURE. “The applications received in 2013 were extremely competitive and filled with state-of-the-art science that promises to advance our understanding of the forms of epilepsy.”

Each year, the most promising grants are selected and funded on the basis of the scientific investigations proposed and the potential that the investigations will lead to a greater understanding of the forms of epilepsy and new therapies that could ultimately lead to a cure.

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CURE Epilepsy

CURE News  Research News 
A Mother's Love

Savannah Salazar went to bed one night in 1995 as a typical toddler. At two and a half years old, she could count to three and knew most of her colors, although she still mixed up black and brown. As far as her parents could see, she was developing pretty much the same way her four-year-old brother had.

And then, in the middle of that night, everything changed. Her parents, Ruben Salazar and Tracy Dixon-Salazar (who is now Dr. Dixon-Salazar), awoke to a sound every parent dreads: their daughter was choking. “She was gagging, hacking, and making frothing noises,” Dr. Dixon-Salazar recalls. “I thought my child was dying. By the time the paramedics came, Savannah was okay. But I'll never forget what one of them said next: ‘Her airway is clear, but what you've just described sounds like a seizure.’”

Savannah didn't go to the hospital that night. Her exhausted parents tried to go back to bed. But when Savannah had another seizure a couple of weeks later—and a total of four within a period of two months—the family embarked on a seemingly endless roller coaster of scans, tests, and doctor visits: blood tests, magnetic resonance imaging (MRI), computed tomography (CT) scans, electroencephalography (EEG)—but they all came back normal.

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CURE Epilepsy

Research News  Epilepsy News 
Marijuana-Derived Epilepsy Drug in Clinical Trial for Children with Uncontrolled Seizures

A new international multi-center study led by researchers from UCSF Benioff Children’s Hospital is the first to evaluate whether purified cannabinoid is effective in treating severe forms of childhood epilepsy that do not respond to standard antiepileptic drugs.

“Better treatment for children with uncontrolled seizures is desperately needed,” said Maria Roberta Cilio, MD, PhD, principal investigator for the multi-center study and director of research at the UCSF Pediatric Epilepsy Center.  “It’s important to get seizure control at any age, but in children, uncontrolled seizures may impact brain and neurocognitive development, which can have an extraordinary effect on quality of life and contribute to progressive cognitive impairment.”

The drug, called Epidiolex, is a purified cannabinoid that comes in a liquid form containing no tetrahydrocannabinol (THC), the psychotropic component in cannabis. Produced by the biopharmaceutical company GW Pharmaceuticals, Epidiolex is considered a schedule 1 substance by the U.S. Food and Drug Administration (FDA) and is closely monitored and restricted by both the FDA and U.S. Drug Enforcement Agency.

The trial will enroll a total of 150 patients across six centers. The study began earlier this month at UCSF Benioff Children’s Hospital and is also underway at NYU Langone Medical Center. Pending FDA approval, it will launch at four additional institutions this year.

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CURE Epilepsy

Epilepsy News 
ECoE Sponsors a Free Audio Conference February 13 Discussing Quality of Epilepsy Care

ECoE Patient and Caregiver FY14 Education Audio Conference
Sponsored by the Epilepsy Centers of Excellence & Employee Education System

The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing continuing education to VA providers to improve the health, well-being, and clinical care of Veteran patients with epilepsy and other seizure disorders.

Read more: Click here to read the full article

CURE Epilepsy

Research News  Epilepsy News 
Science Translational Medicine Publishes Paper by CURE Grantee Jeff Noebels, MD, PhD

Infantile spasms syndrome (ISS) is a devastating form of childhood epilepsy characterized by involuntary,massive motor spasms during early infancy that herald a lifelong disorder of severe seizures and intellectual disability. Mutations in a growing list of genes critical for the establishment of proper neural networks during development have been associated with its many inherited forms. ISS responds poorly to typical anticonvulsant drugs, and despite the lack of a known mechanism, the synthetic glucocorticoid prednisone and adrenocorticotropic hormone (ACTH) remain the primary initial treatments. Although short-term spasm reduction can be achieved, high relapse rates, cognitive impairment, and long-lasting side effects highlight the need for more effective therapy.

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CURE Epilepsy

Epilepsy News 
CURE CBD Position Statement

Three million Americans currently live with epilepsy. Of these, one-third of patients do not respond to any of the currently available treatments. Most people cannot imagine the horror of watching a loved one have even one seizure; yet 1 in 26 Americans will develop epilepsy in their lifetime.

As the leading private funder of epilepsy research, CURE recognizes the emerging need for scientifically rigorous investigations into the mechanisms and efficacy of cannabidiol (CBD) for the treatment of epilepsy. It is important to clarify that many believe it is CBD (the non-psychoactive component of "medical marijuana”) that helps patients.

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CURE Epilepsy

CURE News  Epilepsy News 
VIDEO: How Did a Neuroscientist Ameliorate Seizures in her Daughter's Lennox-Gastaut Syndrome?

In this video segment, Neurology Today’s Editor-in-Chief Steven P. Ringel, MD, talks with Tracy Dixon-Salazar, PhD, associate research director at Citizens United for Research in Epilepsy, about her journey from being a stay-at-home mom to going back to school — earning an associate’s, bachelor’s, master’s, and finally a PhD in neurobiology at University of California, San Diego — that led her to sequencing and identifying mutations in her daughter Savannah and finding an off-label treatment, verapamil (a calcium channel blocker) that helped reduce her daughter’s seizures by 95 percent.

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CURE Epilepsy

Research News 
NIH Announces Six Funding Opportunities for the BRAIN Initiative in Fiscal 2014

The National Institutes of Health is releasing funding opportunities to build a new arsenal of tools and technologies for unlocking the mysteries of the brain. The NIH action is in support of President Obama’s Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

The six opportunities announced today were developed in response to high priority areas identified by the NIH Advisory Committee to the Director’s BRAIN Working Group in September 2013. Awards are expected to be announced in September 2014 and will constitute NIH’s initial investment of $40 million in the initiative.

“The human brain is one of the most complicated structures in the known universe,” said NIH Director Francis S. Collins, M.D., Ph.D. “We have an unprecedented opportunity to develop new technologies that will allow us to map the circuits of the brain, measure activity within those circuits, and understand how their interactions maintain health and modulate human behavior.”

The President’s BRAIN Initiative is a large-scale inter-agency federal effort that the President described as “giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think, how we learn, and how we remember.” Three federal agencies — NIH, National Science Foundation, and Defense Advanced Research Projects Agency, or DARPA — expect to contribute a total of $110 million in the 2014 fiscal year. NIH’s $40 million contribution in fiscal 2014 is in addition to the roughly $5.5 billion slated in the NIH fiscal 2014 budget for neuroscience research. Private organizations have also signed on to bolster this bold, interdisciplinary effort.

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CURE Epilepsy

CURE News  Research News 
WEBINAR: Understanding SUDEP Research and the Role You Can Play

Ending sudden unexplained death in epilepsy (SUDEP) is a shared responsibility. And you can help! Any successful effort will require doctors, people with epilepsy, nurses, researchers, coroners and those bereaved by the loss of someone to SUDEP to work together. It will require collaboration across many different organizations over many years. During this webinar we will begin with a look at what research is telling us about the possible causes as well as future prevention methods and cures for SUDEP.

 

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CURE Epilepsy

Research News  Epilepsy News 
Acorda Presents New Data on Diazepam Nasal Spray at 67th Annual Meeting of American Epilepsy Society

ARDSLEY, N.Y.—Dec 9, 2013-- Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced that new data from a pharmacokinetics study on Diazepam Nasal Spray found comparable pharmacokinetics (PK) whether the drug was administered during or immediately after a seizure. These data were presented at the 67th Annual Meeting of the American Epilepsy Society, in Washington, D.C. Diazepam Nasal Spray is being developed for the treatment of people with epilepsy who experience cluster seizures, also known as acute repetitive seizures.

“In this study, some patients received a dose of Diazepam Nasal Spray while having a seizure, while others received the dose after their seizure activity had ceased,” said Adrian Rabinowicz, M.D., FAAN, Acorda's Senior Vice President of Clinical Development and Medical Affairs. “The results suggest that delivery of Diazepam Nasal Spray was unaffected by the timing of dosage relative to seizure activity. It is critical for a person with epilepsy who experiences cluster seizures that treatment be administered as soon as possible after a cluster is recognized, in order to prevent additional seizure activity.”

This multicenter, open-label study was conducted in adults admitted to an epilepsy monitoring unit for evaluation and management of epilepsy. Of the 30 patients who completed the study, 10 were dosed during a seizure, while the other 20 patients were dosed after their seizure activity had ceased. Plasma concentrations of diazepam were measured for a period of up to 12 hours following the dose.

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CURE Epilepsy

CURE News  Research News 
Univ. of Colorado Professor Amy R. Brooks-Kayal, M.D. Named First Vice President of American Epilepsy Society

Washington, D.C., December 9, 2013 – Amy R. Brooks-Kayal, M.D., Professor with Tenure of Pediatrics, Neurology and Pharmaceutical Sciences at the University of Colorado School of Medicine and Skaggs School of Pharmacy and Pharmaceutical Sciences, and Ponzio Family Chair and Chief of Pediatric Neurology at Children’s Hospital Colorado, over the weekend was elected first vice-president of the American Epilepsy Society (AES), during the Society’s 67th annual meeting and scientific conference at the Washington (DC) Convention Center.

AES is the 3,000-member society of physicians, scientists and allied healthcare professionals dedicated to the prevention, treatment, and cure of epilepsy.   Dr. Brooks-Kayal’s new AES board position puts her in line to head the organization at the end of the current president’s term in office.

Dr. Brooks-Kayal is a practicing epileptologist at Children’s Hospital Colorado.   She also leads an NIH-funded research program focused on the molecular mechanisms underlying epilepsy and the development of new targeted- therapies for epilepsy prevention and disease modification.

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CURE Epilepsy

Research News  Epilepsy News 
Seizure Triggers: How to Deal with Them and Prevent Seizures

ECoE Patient and Caregiver FY14 Education Audio Conference
Sponsored by Epilepsy Centers of Excellence & Employee Education System

Thursday, December 5, 2013
1:00 PM EASTERN TIME
10:00 AM PACIFIC TIME

Maria Lopez, MD
Epilepsy Center of Excellence, Miami VA Medical Center

The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing education and training to patients and caregivers to improve the health and well-being of Veteran patients with epilepsy and other seizure disorders.

Read more: Click here for more details

CURE Epilepsy

Research News  Epilepsy News 
Tapping Medical Marijuana's Potential

Marijuana has been used medically, recreationally and spiritually for about 5,000 years. Known botanically as cannabis, it has been called a “crude drug”: marijuana contains more than 400 chemicals from 18 chemical families. More than 2,000 compounds are released when it is smoked, and as with tobacco, there are dangers in smoking it.

Medical marijuana clinics operate in 20 states and the District of Columbia, and its recreational use is now legal in Colorado and Washington. A Gallup poll conducted last month found that 58 percent of Americans support the legalization of marijuana.

Yet researchers have been able to do relatively little to test its most promising ingredients for biological activity, safety and side effects. The main reason is marijuana’s classification by Congress in 1970 as an illegal Schedule I drug, defined as having a potential for abuse and addiction and no medical value.

American scientists seeking clarification of marijuana’s medical usefulness have long been stymied by this draconian classification, usually reserved for street drugs like heroin with a high potential for abuse.

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CURE Epilepsy

Research News  Epilepsy News 
Acorda CEO: Filed for Approval of Diazepam Nasal Spray

Acorda Therapeutics president & CEO Dr. Ron Cohen discusses its pipeline and current research, whether epilepsy is an epidemic and its plan for its Diazepam nasal spray.

Read more: Click here to watch the video on Yahoo Finance

CURE Epilepsy

CURE News  Epilepsy News 
Love for a Daughter Inspires Action

Some years ago, across a crowded room, I met and quickly became friends with the most elegant of women, Susan Axelrod. That we hadn’t met earlier in our lives is a puzzle. Her sister-in-law was a woman I knew well. And our husbands had interacted many times over news and politics, sharing dinners and war stories during conventions, at least one of which I attended. We lived in parallel worlds, with Susan in Chicago and me in Boston, before we finally met in Washington at a tribute to Sen. Ted Kennedy shortly before his death.

The question is: What did I do without Susan before I met her? In each of our lives there is the girlfriend we share our secrets with, the colleagues we consult with, the other mothers we compare notes with. But when you have a child who has a chronic medical issue — as both Susan Axelrod and I have — the road narrows. The issues are complex, the medical problems can feel unending and the emotions are often raw. Your child grows into an adult and your hopes are the same as you would have for any one of your kids. You want them to have happiness, health and a productive life. But, for you and for them, it’s far more complicated, sometimes overwhelming and at times simply out of reach.

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CURE Epilepsy

Research News  Epilepsy News 
Brain Connectivity Can Predict Epilepsy Surgery Outcomes

A discovery from Case Western Reserve and Cleveland Clinic researchers could provide epilepsy patients invaluable advance guidance about their chances to improve symptoms through surgery. Assistant Professor of Neurosciences Roberto Fernández Galán, PhD, and his collaborators have identified a new, far more accurate way to determine precisely what portions of the brain suffer from the disease. This information can give patients and physicians better information regarding whether temporal lobe surgery will provide the results they seek.

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CURE Epilepsy

Epilepsy News 
ECoE Sponsors a Free Audio Conference November 6 Discussing Treatment of Elderly with Epilepsy

VA ECoE Healthcare Providers FY14 Education Audio Conference
Sponsored by the Epilepsy Centers of Excellence & Employee Education System

The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing continuing education to VA providers to improve the health, well-being, and clinical care of Veteran patients with epilepsy and other seizure disorders.

Read more: Click here to read the full article

CURE Epilepsy

CURE News  Research News  Epilepsy News 
NIH and CDC Launch Registry for Sudden Death in the Young

A registry of deaths in young people from conditions such as heart disease and epilepsy is being created to help researchers define the scope of the problem and set future research priorities. The National Institutes of Health and the Centers for Disease Control and Prevention are collaborating to create the Sudden Death in the Young Registry.

"The sudden death of a child is tragic and the impact on families and society is incalculable," said Jonathan Kaltman, M.D., chief of the Heart Development and Structural Diseases Branch within the Division of Cardiovascular Sciences at the NIH's National Heart, Lung, and Blood Institute (NHLBI). "This registry will collect comprehensive, population-based information on sudden unexpected death in youths up to age 24 in the United States. It is a critical first step toward figuring out how to best prevent these tragedies."

Cases of sudden cardiac death or sudden unexpected death in epilepsy (SUDEP) are not routinely or systematically reported, and no commonly agreed upon standards or definitions for reporting currently exist. Complete information has not been collected on the incidences, causes, and risk factors for sudden death in the young. The lack of evidence fuels disagreements about the best prevention approach. Sudden cardiac death, also called sudden cardiac arrest, happens when the heart suddenly and unexpectedly stops beating and blood stops flowing to the brain and other vital organs.

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CURE Epilepsy

CURE News  Research News 
CURE Awards $2 Million to Grantees for Research in Epilepsy

October 21, 2013, Chicago, IL - Citizens United for Research in Epilepsy (CURE), the leading nongovernmental funder of epilepsy research, is proud to announce the most recent recipients of research grants awarded this year. Over $2 million was awarded in this cycle.

“These investigators have demonstrated they understand the urgency in finding cures for the epilepsies, and we are confident in their abilities to accelerate breakthroughs,” stated Susan Axelrod, Founding Chair of CURE.

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CURE Epilepsy

Research News  Epilepsy News 
Researchers identify key proteins that are involved in the worsening of epilepsy and associated behavioral issues

CURE-funded research has shown that normal function of SNARE proteins (proteins important for releasing chemicals to signal neurons) found on star-shaped glia cells in the brain, called astrocytes, is crucial for seizures to progress in frequency and severity.  Decreasing SNARE function limited seizures and epilepsy progression.  This was also true for behavioral deficits and inflammation where blocking SNARE protein action was show to decrease both.  Studies like these may help us to understand why certain types of epilepsy can worsen over time and cause a myriad of behavioral and cognitive effects that are detrimental to patients.

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CURE Epilepsy

Research News  Epilepsy News 
Exome Sequencing in the Clinic

Two-hundred fifty patients were referred by their physician to have their whole exome sequenced (the exome is the part of the genome that codes for proteins), of which most were children with neurological disorders such as epilepsy.  Researchers then took these patients’ exome data and analyzed it.  They were able to identify the cause of the disorder in 25% of the patients.  This is significant because it states that 25 out of 100 patients who don’t know the cause of their disorder could have the genetic cause identified using this method.

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CURE Epilepsy

Research News  Epilepsy News 
Zebrafish in the Swim as Research Animals

A congregation of zebrafish larva - each about the size of an eyelash and translucent with bulging black eyes - darted violently under the lens of a microscope.

The tiny fish are key players in UCSF neuroscientist Scott Baraban's quest to understand first how seizures in humans develop and then how to prevent them. Working with fish has accelerated his research, allowing him to uncover potential epilepsy treatments with incredible speed and at a fraction of the cost compared with mice.

Those advantages and others have caused labs around the world to increasingly turn to zebrafish for research, using them to study everything from epilepsy to environmental toxins.

"There has been something like a Cambrian explosion in zebrafish research in the past 10 years," said Zoltan Varga, director of the Zebrafish International Resource Center at the University of Oregon.

In 2002, the center recorded about 330 scientific labs working with the fish. By 2012, that number had grown to more than 800.

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CURE Epilepsy

CURE News  Research News 
Annals of Neurology Publishes 2012 CURE Grantee’s Paper

Published in the September issue of Annals of Neurology was a paper by Vanderbilt University investigator and CURE Grantee Jingqiong (Katty) Kang.  Dr. Kang’s work focuses on Dravet Syndrome, a severe form of infantile epilepsy.  Genetic changes in the gene that codes for a major inhibitory receptor in the brain (GABRG2) can cause Dravet Syndrome, but it can also cause less severe forms of epilepsy.  Dr. Kang’s work shows that different types of genetic changes in this gene can lead to the differences in epilepsy seen in patients.  For example, patients who have a truncating mutation early in the sequence of this gene, have more severe seizures than patients who have a truncating mutation later in the gene sequence.  This work explains how patients with defects in the same gene might have very different types of epilepsy and lays the foundation for future work aimed at stopping seizures in these patients.

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CURE Epilepsy

Research News 
FOA: Centers Without Walls for Collaborative Research in the Epilepsies: Sudden Unexpected Death in Epilepsy (SUDEP)

NIH/NINDS issued a request for applications to obtain funding to accelerate the rate of progress in understanding the underlying causes and contributing factors to SUDEP and work toward interventions that prevent SUDEP.

This purpose of this Funding Opportunity Announcement (FOA) is to support a multicenter, multidisciplinary research team to accelerate the rate of progress in identifying the underlying mechanisms that cause SUDEP, identify risk factors of SUDEP for individuals with epilepsy, and/or develop prevention strategies to reduce SUDEP rates.  It is expected that advances in understanding the underlying mechanisms of SUDEP will enable more rapid translation of targeted clinical therapies and prevention strategies.

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CURE Epilepsy

CURE News  Research News  Epilepsy News 
Potential Epilepsy Drug Discovered Using Zebrafish

An antihistamine discovered in the 1950s to treat itching may also prevent seizures in an intractable form of childhood epilepsy, according to researchers at UC San Francisco who tested it in zebrafish bred to mimic the disease.

The researchers said their unexpected discovery offers a glimmer of hope for families of children with Dravet Syndrome, a rare genetic disorder that manifests in early childhood with disabling, lifelong consequences. These include dozens, if not hundreds, of daily seizures, as well as profound cognitive and social deficits.

“It is very unfortunate for these children and families, as they often live from seizure to seizure,” said Scott C. Baraban, PhD, lead author of the article, UCSF William K. Bowes Jr. Endowed Chair in Neuroscience Research and professor of Neurological Surgery.

Small, translucent and easy to breed, zebrafish are increasingly being used in place of rodents to screen drugs for rare genetic disorders. But no one had used them for epilepsy drug screening until Baraban’s team found zebrafish with a genetic mutation identical to the one that causes Dravet Syndrome.

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CURE Epilepsy

Research News  Epilepsy News 
New Epilepsy Research Could Lead To Targeted Treatments

New genetic research could provide life-changing treatments for the approximately 50 million people with epilepsy worldwide.

A study in the journal Nature has identified two genes and 25 mutations associated with the most serious forms of epilepsy.

By identifying these genes, doctors can develop targeted treatments.

Dr. David Goldstein, director of the Duke Center for Human Genome Variation, and Tracy Dixon-Salazar, a neurobiologist who is associate research director for Citizens United for Research in Epilepsy, join Here & Now to discuss the new research.

Dixon-Salazar started studying neurobiology when her daughter Savannah was diagnosed with a childhood epilepsy.

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CURE Epilepsy

CURE News  Research News  Epilepsy News 
CURE Funds Workshop on Pediatric Epilepsy

A manuscript from the workshop “Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today” will be published in the August 21 issue of Neurology®, the medical journal of the American Academy of Neurology.  Epilepsy affects 1/26 people over the course of the lifespan; 10 percent of that risk is concentrated in the first two to three years of life.

Citizens United for Research on Epilepsy (CURE) funded the workshop which focused on infants and toddlers with epilepsy, and involved stakeholders including pediatric epilepsy care providers, educators, clinical researchers, and, most importantly, parents of children with epilepsy. Four themes came out of the workshop: patient outcomes, diagnosis, role of parents and resources outside the medical system; all with an emphasis on early onset epilepsy for children three and under.

“As the mother of a daughter who developed epilepsy during this vital time in her development, I know how critically important control of early life seizures is,” said Susan Axelrod, CURE’s Founding Chair. “I was personally proud of CURE's support and involvement with this workshop because we must pull together all available resources to prevent the lifelong and serious effects epilepsy so often has on children. Workshops like this give these children the best shot at a normal, healthy life."

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CURE Epilepsy

Research News  Epilepsy News 
Caffeine consumption during pregnancy and its effects on the brain during development

Caffeine is the most consumed psychoactive substance in the world, including during pregnancy. Christophe Bernard, Inserm research director, and his team within the "1106 Institut de Neurosciences des Systèmes" unit (Inserm/Aix-Marseille University), have recently described certain harmful effects after caffeine consumption by female mice during pregnancy on the brains of their offspring. This work, despite performed in rodents, suggests that careful studies should be performed to assess the consequences of caffeine consumption by women during pregnancy.

These results are being published in the Science Translational Medicine review of 7th of August 2013.

Many substances have a direct effect on brain function, by modifying the activity of neurons. This applies to antidepressants, anti-anxiety drugs, nicotine, alcohol and recreational drugs such as cannabis, heroin, cocaine, etc. These substances, known as psychoactive substances, bind to proteins present in brain cells and modify their activity. When consumed during pregnancy some of these psychoactive substances can affect the construction of the fetal brain, as the proteins to which they bind play key roles in brain development. The consumption of some of these substances is thus strongly discouraged during pregnancy.

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CURE Epilepsy

Research News 
Newly Identified Genetic Factors Drive Severe Childhood Epilepsies

DURHAM, N.C. -- Researchers have identified two new genes and implicated 25 distinct mutations in serious forms of epilepsy, suggesting a new direction for developing tailored treatments of the neurological disorders.

The findings by an international research collaboration, which includes investigators from Duke Medicine, appear Aug. 11 in the journal Nature.

Epileptic encephalopathies are a devastating group of severe brain disorders characterized by the onset of seizures at an early age. The seizures are often accompanied by cognitive and behavioral issues, which can hinder the quality of life of affected children and their families.

The cause of epileptic encephalopathies is largely unknown; while genes are believed to play an important role, specific genes have only been identified in a small number of cases.

“One important aspect of the study is that we identified an unusually large number of distinct disease-causing mutations -- 25 in total, all of which were de novo mutations.  These mutations will be an invaluable resource to scientists working to elucidate the underlying causes of the epilepsies,” said study author David Goldstein, PhD, director of the Duke Center for Human Genome Variation.

A de novo mutation is a new alteration in a gene that appears for the first time in a family, and results from a genetic mutation in a parent’s germ cell (egg or sperm).

Learning more about the disorders’ origin will guide development of effective therapies, which is the goal of Epi4K, an international research consortium funded by the National Institute of Neurological Diseases and Stroke (NINDS).

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CURE Epilepsy

Research News  Epilepsy News 
Silky brain implants may help stop spread of epilepsy

CURE is proud to have funded pilot work with Dr. Boison showing that adenosine is involved in epilepsy and it’s a rational target for therapy. In this study, he shows that putting adenosine directly in the brain, it lessened the epilepsy over time.

Silk has walked straight off the runway and into the lab. According to a new study published in the Journal of Clinical Investigation, silk implants placed in the brain of laboratory animals and designed to release a specific chemical, adenosine, may help stop the progression of epilepsy. The research was supported by the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Biomedical Imaging and Bioengineering (NIBIB), which are part of the National Institutes of Health.

The epilepsies are a group of neurological disorders associated with recurring seizures that tend to become more frequent and severe over time. Adenosine decreases neuronal excitability and helps stop seizures. Earlier studies have suggested abnormally low levels of adenosine may be linked to epilepsy.

Rebecca L. Williams-Karnesky, Ph.D. and her colleagues from Legacy Research Institute, Portland, Ore., Oregon Health and Sciences University (OHSU), Portland, and Tufts University, Boston, looked at long-term effects of an adenosine-releasing silk-implant therapy in rats and examined the role of adenosine in causing epigenetic changes that may be associated with the development of epilepsy.

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"Epilepsy in a dish": Stem cell research reveals clues to disease's origins and may aid search for better drugs

ANN ARBOR, Mich. — A new stem cell-based approach to studying epilepsy has yielded a surprising discovery about what causes one form of the disease, and may help in the search for better medicines to treat all kinds of seizure disorders.

The findings, reported by a team of scientists from the University of Michigan Medical School and colleagues, use a technique that could be called “epilepsy in a dish”.

By turning skin cells of epilepsy patients into stem cells, and then turning those stem cells into neurons, or brain nerve cells, the team created a miniature testing ground for epilepsy. They could even measure the signals that the cells were sending to one another, through tiny portals called sodium channels.

In neurons derived from the cells of children who have a severe, rare genetic form of epilepsy called Dravet syndrome, the researchers report abnormally high levels of sodium current activity. They saw spontaneous bursts of communication and “hyperexcitability” that could potentially set off seizures. Neurons made from the skin cells of people without epilepsy showed none of this abnormal activity.

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Anti-rejection drug reduces seizures in patients with genetic disorder, say doctors at Texas Children's Hospital, Baylor College of Medicine and Cincinnati Children's Hospital

Everolimus, a drug used to treat cancers and prevent rejection of transplanted organs, reduced the occurrence of seizures in patients with a genetic disorder called tuberous sclerosis complex in a small prospective study conducted by experts at Texas Children's Hospital, Baylor College of Medicine and Cincinnati Children's Hospital Medical Center and reported online in the journal Annals of Neurology (http://onlinelibrary.wiley.com/doi/10.1002/ana.23960/abstract).

Tuberous sclerosis complex results from faulty signaling in a key molecular pathway, causing abnormal cell growth that affects the skin, brain, lungs and heart, said Dr. Angus Wilfong, director of the comprehensive epilepsy program at Texas Children's Hospital and associate professor of pediatrics and neurology at Baylor College of Medicine. The seizures suffered by patients with the disorder occur because of the abnormal growths in the brain, said Wilfong, an author of the report.

Everolimus suppresses the activity of the mTOR pathway, which is overactive in this disorder, said Wilfong.

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Research News 
Seizures, Early Alzheimer's May Go Hand in Hand

Patients with early onset and transient symptoms in early Alzheimer's disease -- or its harbinger, amnestic mild cognitive impairment (MCI) -- may also be experiencing seizures, which often aren't convulsive in this setting, researchers suggested.

Epilepsy or subclinical epileptic brain activity was associated with 5.5 to 6.8 years' earlier presentation with cognitive decline symptoms, Keith Vossel, MD, MSc, of the Gladstone Institute of Neurological Disease in San Francisco, and colleagues reported.

Fully 55% of epilepsy in Alzheimer's and amnestic MCI was nonconvulsive, instead being marked by transient cognitive symptoms such as aphasia, amnestic spells, sensory phenomena, or deja vu.

Those features should raise clinical suspicion for seizures, the group suggested online in JAMA Neurology.

"Careful identification and treatment of epilepsy in such patients may improve their clinical course," they wrote, adding that the "findings add to the mounting evidence that Alzheimer's disease-related neural network hypersynchrony is an early and potentially treatable component of the disease."

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Epilepsy News 
In Montreal, Call for Openness on 'Sudden Unexpected Death in Epilepsy' - Epilepsy Can be a Deadly Disease

Experts and epilepsy organisations call for openness on Sudden Unexpected Death in Epilepsy (SUDEP) as global SUDEP campaign reaches new high at the 30th International Epilepsy Congress in Montreal 23rd to 27th June.

Epilepsy, like heart disease and stroke, ranks in the top ten causes of premature deaths and these deaths are potentially avoidable.  Lack of public awareness of epilepsy mortality has meant research and treatment has lagged behind.  Up to 1% of Canadians are affected by epilepsy, and this condition is more common in children.  Many young and healthy people have lost their lives.  Initiatives are underway in research, awareness and support for families affected, but funds are urgently needed.

Each year, about one in every thousand people with epilepsy will die suddenly with no obvious cause.  This is known as Sudden Unexpected Death in Epilepsy (SUDEP) and the risk rises to 1:150 for people with seizures that are poorly controlled with medication.  SUDEP, when a person with epilepsy dies suddenly and no other cause of death is found, is now recognised as a major cause of mortality associated with epilepsy and one with devastating consequences.

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CURE Grantee Dr. James McNamara: 2-week treatment found to prevent epilepsy in mice gives hope for drug development

Temporal lobe epilepsy, the most common form of epilepsy, is characterized by recurrent seizures throughout life and often behavioral abnormalities, with devastating impacts on patients and their families. Unfortunately, the condition is often not responsive to anticonvulsants. Now scientists report online June 20 in the Cell Press journal Neuron that targeting a particular signaling pathway in mice can prevent the development of temporal lobe epilepsy with just two weeks of treatment, offering hope that researchers will be able to develop effective drugs to mitigate recurrent seizures and the development of epilepsy. Many patients with temporal lobe epilepsy experience an initial episode of prolonged seizures, known as status epilepticus, which is often followed by a period of seizure-free recovery before individuals develop recurring seizures. Research in animals suggests that the prolonged seizures in status epilepticus cause or contribute to the development of epilepsy.

"An important goal of this field has been to identify the molecular mechanism by which status epilepticus transforms a brain from normal to epileptic," says Dr. James McNamara, of the Duke University Medical Center in Durham. "Understanding that mechanism in molecular terms would provide a target with which one could intervene pharmacologically, perhaps to prevent an individual from becoming epileptic."

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At CURE's 15th Annual Chicago Benefit, Guest of Honor Hillary Rodham Clinton Credits Breakthroughs in Research as Progress toward Cure for Epilepsy

Citizens United for Research in Epilepsy (CURE) held their 15th Annual Chicago Benefit at the Navy Pier Grand Ballroom on Thursday, June 13, 2013. More than 1,000 guests joined CURE founder and Chair Susan Axelrod and David Axelrod to support cutting-edge epilepsy research and raised nearly $1.5 million. The funds will go toward finding a cure for epilepsy.

Former Secretary of State Hillary Rodham Clinton gave an impassioned speech detailing her personal involvement with the cause, and recalling the first CURE dinner in 1999, where she was the keynote speaker, and imploring guests to raise their voices on behalf of the cause.

“All along the way CURE was at the forefront,” remarked Mrs. Clinton to a sold-out crowd. “We are now at a point, because of the mapping of the human genome - and because of breakthroughs in brain research - that for the first time we can really begin to unravel the mystery of epilepsy.”

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Epilepsy News 
With Epilepsy Treatment, The Goal Is To Keep Kids Seizure-Free

Barton Holmes was 16 months old when he had his first seizure. "He was convulsing and his eyes were rolling in the back of his head," his mother, Catherine McEaddy Holmes, says. "His lips were blue. I thought he was dying."

The seizure ended in less than a minute. And by the time an ambulance arrived, Barton was back to his old self. Even so, doctors at Children's National Medical Center in Washington, D.C., where the family lives, kept him overnight while they tried, without success, to figure out what had caused the seizure.

When Barton had a second seizure 10 days later, doctors didn't hesitate. "They were very aggressive and wanted us to start medication immediately," Holmes says. So Barton, who is 2 now, began taking an antiepileptic drug called Keppra.

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Cardiac Events Predictable in Kids with Epilepsy

BALTIMORE -- Cardiopulmonary abnormalities were associated with predictable patient and seizure characteristics in in children with epilepsy, researchers reported here.

Seizure-related apnea was associated with younger age, symptomatic-generalized seizure (versus primary-generalized seizure), seizure duration, anti-epileptic drug use, and seizure-related bradycardia, according to Kanwaljit Singh, MD, of Boston Children's Hospital, and colleagues.

Seizure-related tachypnea was associated with age, right-sided seizure, and was inversely related to anti-epileptic drug use, Singh said in a poster presentation during the Associated Professional Sleep Societies meeting.

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HHMI-CURE Medical Fellows Announced

As announced earlier this year, CURE has partnered with the Howard Hughes Medical Institute’s (HHMI) Medical Research Fellows Program to provide support for up to three medical students to conduct mentored research on epilepsy.

CURE is pleased to announce that two students have been chosen as HHMI-CURE Medical Fellows.

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Epilepsy News 
Patient and Caregiver Education Phone Conference

img align="right" class="picRightTopNoBorder" src="http://www.cureepilepsy.org/images/shared/ECoE.jpg" />Description: The Epilepsy Center of Excellence and the Employee Education System are proud to announce a series of audio conferences providing education and training to VA patients and caregivers to improve the health and well-being of Veteran patients with epilepsy and other seizure disorders.

Outcome Objectives:

  • Define Epilepsy
  • Identify the impact of Epilepsy on memory
  • Describe types of memory loss
  • Discuss epileptic phases in which memory loss occurs
  • Explain the effects of Epilepsy treatment on memory
  • Identify interventions which may enhance recall and memory preservation

 

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Cell Transplant Holds Significant Potential for Patients with Epilepsy

Chicago, May 6, 2013 - In a new paper published in Nature Neuroscience, a group of investigators at University of California, San Francisco suggest that an interneuron-based cell transplant holds therapeutic potential in animals with epilepsy, and offers real hope for its potential in humans.

Scott Baraban, PhD, Robert Hunt, PhD and colleagues report that injecting progenitors, or stem cells, of inhibitory neurons into the hippocampus of adult epileptic mice (the region of the brain necessary for learning and memory) reduced the frequency of seizures and restored behavioral deficits in spatial learning.  

This study provides powerful preclinical evidence that stem cell transplantation should continue to be studied as a potential novel therapy for people with epilepsy.

In 2004, CURE granted Dr. Baraban a 1-year, $50,000 award to study whether transplanted stem cells can survive and functionally integrate into the brain of adult mice; in 2007, he was awarded another 1-year grant for $75,000. The goal of this grant was to use the transplantation technique he had validated and see if he could correct abnormal brain activity in a mutant mouse.

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CURE Forms First Dream Team to Fight Childhood Epilepsy Syndrome

Since announcing the launch of its new Infantile Spasms Research Initiative last month, Citizens United for Research in Epilepsy (CURE) has awarded eight teams of investigators with $1.3 million in grants to proceed with cutting-edge research to find a cure for infantile spasms, a rare childhood epilepsy syndrome. Infantile Spasms (IS) can have profoundly negative long-term developmental and cognitive consequences. Currently available treatments are often ineffective and frequently associated with substantial adverse effects.

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Brain: Tiny Device Sends Seizure Alert

For the first time, a small device implanted in the brain has safely and accurately predicted the onset of seizures in a subset of adults whose epilepsy doesn't respond to drugs, according to a first-in-man study.

But implanting the device was not without risk: 11 device-related adverse events were noted within 4 months of implantation of the intracranial electroencephalographic monitoring system in 15 patients, Mark Cook, MBBS, of St. Vincent's Hospital, Melbourne, Australia, and colleagues wrote in an article published online by Lancet Neurology.

A total of four serious adverse events occurred during 12 months follow-up, but two of those events resolved without further complications.

As for efficacy, after 4 months, 11 of the 15 patients met criteria to move on the actual testing phase, with high likelihood performance estimate sensitivities ranging from 65% to 100%.

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Epilepsy Foundation To Present Epilepsy Therapy Project Lifetime Accelerator Award To Henrik Klitgaard, Ph.D., Recognizing Contributions To New Therapies

LANDOVER, Md., April 30, 2013 /PRNewswire-USNewswire/ -- The Epilepsy Foundation announced today that Henrik Klitgaard, Ph.D., Vice President and Fellow, Neurosciences Therapeutic Area, UCB, has been named the recipient of the Epilepsy Therapy Project Lifetime Accelerator Award in recognition of his commitment and contributions to the field of epilepsy and to the people affected by it. Dr. Klitgaard will be honored at the Antiepileptic Drug and Device Trials (AED) XII Conference being held May 15-17, 2013, at the Turnberry Isle Miami Hotel, Aventura, FL.

A leading and accomplished researcher in the epilepsy community, Dr. Klitgaard has conducted antiepileptic drug discovery in the pharmaceutical industry for more than two decades, most notably contributing to the discovery and development of levetiracetam. Currently, he serves as Vice President and Fellow, Neurosciences Therapeutic Area, UCB, where he has contributed to the research and development of multiple promising new anti-epilepsy drug candidates including PPSI, seletracetam and brivaracetam.

Dr. Klitgaard was selected for the honor by an independent committee of global thought leaders and clinical investigators in epilepsy therapy discovery and development.

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Former Secretary of State Hillary Rodham Clinton Honored at CURE's 15th Annual Chicago Benefit with Susan and David Axelrod

Chicago, IL - Former Secretary of State Hillary Clinton will be honored June 13th at the 15th annual Citizens United for Research in Epilepsy dinner at Navy Pier.

Secretary Clinton, who as First Lady was the keynote speaker at the inaugural CURE dinner in 1999, was the driving force behind the first White House Conference on Curing Epilepsy.

"Hillary Clinton is, in many ways, one of the founding mothers of CURE," said Susan Axelrod, CURE's chair.  "Her support gave our movement for more and better research a critical boost right from the start. We are thrilled that she is returning to mark our 15th anniversary and the progress she helped make possible."

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Hillary in 2016? Axelrod calls her 'first among equals'

WASHINGTON — Former Secretary of State Hillary Rodham Clinton hits Chicago on June 13 to be honored by CURE, the epilepsy research foundation — this while a new poll and the start Wednesday of a new chapter in her life are sparking even more speculation about a 2016 White House bid.

CURE — Citizens for Research in Epilepsy — was founded by President Barack Obama’s former top strategist David Axelrod, and his wife, Susan, 15 years ago; their daughter, Lauren, has epilepsy.

Clinton, then the first lady, was the draw at the group’s very first fund-raising dinner and the boost from her star power was “instrumental in getting us started,” Axelrod told me.

The June event will be at the Navy Pier Grand Ballroom and Clinton (a Chicago native: born in Edgewater Hospital, raised in Park Ridge) will deliver remarks for the CURE fund-raiser at a time when guessing about a future presidential run is the top political sport.

Since leaving the State Department, Clinton has been “an extraordinarily in demand speaker and this will be one of her early appearances. We’re thrilled to have her,” Axelrod said.

Axelrod and I spoke on Wednesday — the day after a Gallup Poll showed Clinton’s popularity soaring. Clinton’s 64 percent favorable rating was above Obama’s 55 percent and Vice President Joe Biden’s 45 percent.

Clinton on Wednesday was delivering the first of a series of highly paid speeches for private groups, with the poll and the speeches driving her political futures higher this week.

In a round of interviews before she left State, Clinton said she would be taking some time off to catch up on sleep and get in shape. Instead, she’s working on a memoir and filling her calendar with dates.

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Approaching Epilepsy Like an Electrical Engineer

Yevgeny Berdichevsky, an assistant professor in the department of electrical and computer engineering, has been awarded a one-year, $100,000 Taking Flight award to support his research into abnormal neural circuitry—a potential cause of epilepsy.

The award is given by CURE, Citizens United for Research in Epilepsy, a 15-year-old organization that has raised more than $26 million to “lead the way to a cure for the epilepsies.” CURE uses an advisory board of more than 300 scientists to review and fund the most promising, cutting-edge projects.

Berdichevsky is the director of Lehigh’s Neural Engineering Lab, where students join him in studying neurobiology from an engineering perspective. Berdichevsky develops brain tissue cultures that are compatible with microfluidic and microelectrode devices and, using a combination of engineering and molecular approaches, studies the abnormal functions that result in epileptic seizures.

“For decades, researchers believed that epilepsy was somehow connected to imbalance of neurotransmitters in the brain,” said Berdichevsky. “As I put aside engineering for a time to learn more about the medical side of things, I began to realize that epilepsy may not just be connected to neurotransmitter levels, but rather a disorder of the neuro-circuitry itself.”

This is a relatively new notion in the field of epilepsy. The long history of medical research in this arena has focused on the idea that chemical imbalances in the brain are the cause. In recent years, however, studies have consistently determined that differences between healthy and epileptic brains may go beyond chemical transmitters..
Berdichevksy embarked upon his own research direction, looking into how an epileptic seizure begins. (A second aspect of his work is seeking a better understanding of the fundamental mechanisms of why seizures even happen.)

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Ketogenic Diet offers hope of a seizure-free life to children with epilepsy

Nevin Runge was 10 months old when she had her first seizure. At 2 1/2 she had such a severe seizure that she was transported by helicopter to a local children's hospital. What followed was a cycle of drugs that often caused more harm than good, remembers her mom, April Runge, of Crystal Lake.

Nevin endured side effects that dulled her emotions or made her nerve endings scream with pain-so much so that she couldn't even bear a hug from her parents.

"We tried another drug that gave her a rash, another gave her tremors and she couldn't even hold a spoon to feed herself," April says. "We were pouring 12 medications down her throat a day."

When an EEG showed Nevin was having up to 500 seizures a day, despite all the medication, her parents decided it was time to try the Ketogenic Diet, a high-fat diet for children with epilepsy created in the 1920s that had fallen out of favor as new epilepsy drugs hit the market. But with drugs failing to be the hoped for cure-all, some doctors have begun using the diet for children with epilepsy again, often with amazing results.

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Fact Sheet: BRAIN Initiative

In his State of the Union address, the President laid out his vision for creating jobs and building a growing, thriving middle class by making a historic investment in research and development.

Today, at a White House event, the President unveiled a bold new research initiative designed to revolutionize our understanding of the human brain. Launched with approximately $100 million in the President’s Fiscal Year 2014 Budget, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and traumatic brain injury.

The BRAIN Initiative will accelerate the development and application of new technologies that will enable researchers to produce dynamic pictures of the brain that show how individual brain cells and complex neural circuits interact at the speed of thought.  These technologies will open new doors to explore how the brain records, processes, uses, stores, and retrieves vast quantities of information, and shed light on the complex links between brain function and behavior.

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Research News 
Cooling may prevent trauma-induced epilepsy

In the weeks, months and years after a severe head injury, patients often experience epileptic seizures that are difficult to control. A new study in rats suggests that gently cooling the brain after injury may prevent these seizures.

“Traumatic head injury is the leading cause of acquired epilepsy in young adults, and in many cases the seizures can’t be controlled with medication,” says senior author Matthew Smyth, MD, associate professor of neurological surgery and of pediatrics at Washington University School of Medicine in St. Louis. “If we can confirm cooling’s effectiveness in human trials, this approach may give us a safe and relatively simple way to prevent epilepsy in these patients.”

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CURE Grantee Uncovers Potential Cause of Childhood Epilepsy

CURE (Citizens United for Research in Epilepsy) Grantee Peter Crino, MD, PhD, has found important new evidence that the Human papillomavirus (HPV) – the most common cause of cervical cancer – may be linked to childhood epilepsy.  This breakthrough discovery may lead to a definable cause and treatment for focal cortical dysplasia type IIB (FCDIIB).  Dr. Crino’s work has significant ramifications for how we think about this type of childhood epilepsy and could lead to new approaches to treatment and prevention.

Specifically, the connection was identified in brain tissue from children who had surgery for FCDIIB, a form of focal malformations of cortical development (FMCD).  Cortical dysplasias are malformations of the brain which occur during development and often associated with severe and difficult to treat epilepsy.  Seizures in children with FMCD are often resistant to treatment with existing drugs.

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CURE and HHMI Form Partnership to Foster Future Physician-Scientists in Epilepsy Research

Chicago, IL - CURE is pleased to announce an exciting new partnership with the Howard Hughes Medical Institute's Medical Research Fellows Program. CURE will provide financial support for up to three medical students each year to conduct mentored research on epilepsy.

The goal of HHMI's Medical Research Fellows Program is to increase the number of future physician-scientists and medically-trained researchers by immersing medical, dental, and veterinary students in full-time research early in their professional education. This is done before students make plans for their residency or postgraduate training so that they can consider a career as a physician-scientist, dentist- or veterinarian-scientist. The Fellows gain the research training by engaging in basic, translational or applied biomedical research for a full year at academic or nonprofit institutions.

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UCI neuroscientists create fiber-optic method of arresting epileptic seizures

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Temple scientists find cancer-causing virus in the brain, potential connection to epilepsy

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Codey/Cunningham Bill to Improve Research on Sudden, Unexpected Death in Epilepsy Advances

TRENTON – Legislation sponsored by Senators Richard J. Codey and Sandra Bolden Cunningham that would establish a program to better educate medical examiners in the state about sudden, unexpected death in epilepsy (SUDEP) and improve research of this rare condition, was approved today by the Senate Health, Human Services & Senior Citizens Committee.

“Sudden unexpected death in epilepsy is a rare condition that affects younger or middle-aged people who die without a specific, clear cause. However, we still know relatively little about why certain people are affected,” said Senator Codey (D-Essex, Morris). “Opening the door to additional research on this condition could be the key to finding its cause, and ultimately to saving lives.”

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Mild Brain Cooling After Injury Prevents Epileptic Seizures

Researchers at the University of Washington report in an upcoming issue of Annals of Neurology that mild cooling of the injured brain prevents the later development of epileptic seizures.

Epilepsy can either be genetic or acquired due to brain injury. Traumatic head injury is the leading cause of acquired epilepsy in young adults, and is often difficult to manage with available antiepileptic drugs. The mechanisms leading to the onset of epileptic seizures after brain injury are not known and there is currently no treatment to cure it, prevent it, or even limit its severity.

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A Sudden, Scary Side to Epilepsy

Neurologist Andrew Wilner, MD, discusses the first Partners Against Mortality in Epilepsy (PAME) conference with conference co-chairs Jeffrey Buchholter, MD, PhD, Pediatric Neurologist and Epileptologist at the Barrow Neurologic Institute in Phoenix, Arizona, and Gardiner Lapham, RN, MPH, Member of the Board of Directors of CURE: Citizens United for Research in Epilepsy. The meeting took place June 21-24, 2012, in Evanston, Illinois, and brought together a diverse group of scientists, clinicians, families, and others interested in advancing efforts aimed at preventing sudden death in people with epilepsy.

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Laser Zaps Seizures in Rats

A laser system that targets the thalamus instantly stopped seizure-inducing signals to the cerebral cortex of rats, suggesting a new way of controlling intractable seizures in humans without injuring the vulnerable cortex.

Researchers led by John R. Huguenard, PhD, at Stanford University learned that post-thrombotic cortical stroke resulted in neuronal hyperexcitability in the thalamus, which is distant from the cortex but connected to it. To see if this process could be interrupted in real time, they developed an automated implantable system that emitted 594-nm light to the affected area as soon as seizure activity began.

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Researchers Use Light to Turn Off Seizures

Epilepsy may not be the first side effect to come to mind when you think about the after-effects of a stroke. But epileptic seizures are a relatively common result of a stroke; some studies estimate that more than 10% of stroke victims develop seizures afterward.

Despite the prevalence of epilepsy among stroke sufferers, researchers have had little idea why the two are connected. Because strokes often involve the injury or death of a region of the cortex -- the outer shell of the brain -- scientists had postulated that the function of the areas around the brain might be disrupted by the injury, leading to seizures.

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White and Wilcox awarded two grants to investigate difficult-to-treat epilepsies

Brain Institute Investigator John White, Ph.D., and Professor of Pharmacology and Toxicology Karen Wilcox, Ph.D., were awarded $1.7 Million from the National Institute of Neurological Disorders and Stroke, and $300,000 from the Ben B. and Iris M. Margolis Foundation to study the roles of astrocytes in epilepsy.

There are over three million Americans with epilepsy, and for nearly one-third of them, current treatments are ineffective. Amongst the epilepsies that are difficult to treat are temporal lobe epilepsy (TLE) and viral-induced epilepsy. This is in part because the development of these types of epilepsies is not well understood.

Evidence suggests that astrocytes – long dismissed by scientists as passive support cells for neurons – undergo dramatic changes when TLE and viral-induced epilepsies are triggered in animal models. White and Wilcox will research how astrocyte dynamics influence the development of TLE and infection-induced epilepsies.

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Nutritional Supplement Offers Promise in Treatment of Form of Autism with Epilepsy

In mice, added amino acid reduced associated epilepsy, eased neurobehavioral symptom

An international team of researchers, led by scientists at the University of California, San Diego and Yale University schools of medicine, have identified a form of autism with epilepsy that may potentially be treatable with a common nutritional supplement.

The findings are published in the September 6, 2012 online issue of Science.

Roughly one-quarter of patients with autism also suffer from epilepsy, a brain disorder characterized by repeated seizures or convulsions over time. The causes of the epilepsy are multiple and largely unknown. Using a technique called exome sequencing, the UC San Diego and Yale scientists found that a gene mutation present in some patients with autism speeds up metabolism of certain amino acids. These patients also suffer from epileptic seizures. The discovery may help physicians diagnose this particular form of autism earlier and treat sooner.

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Epilepsy News 
A Discussion on Kids with Epilepsy

For years, people with seizure disorders have been stigmatized. Even today, epilepsy remains widely misunderstood, and the disease can particularly difficult for children, and for their parents. What services and treatments are available? What about research for causes and cures?

Read more: Click here to listen to the discussion.

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Epilepsy News 
Treatments Come Slowly and Surgery Remains Risky for Epilepsy Patients

Paul Barney had his first seizure four days after his fourth birthday. By the time he was 10, his mom worried that if they didn’t get the seizures under control soon, he might lose IQ points along with his ready smile.

When Brian Manning, 11, had a seizure on the school playground – instead of in his bed as usual – his parents knew it was time for drastic action. He’d already had brain surgery once, but doctors said he might need five or six more operations. Or he could have one, to completely remove the right half of his brain.

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CURE Grantee Receives Department of Defense Grant to Continue Research on TRH

Dr. Michael J. Kubek, Ph.D., who was awarded this grant, has been doing research on thyrotropin releasing hormone (TRH) for the past three decades. The Army funded international research collaboration on suicidal ideation is the latest addition to his research.

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Research News 
Implantable Devices Could Detect and Halt Epileptic Seizures

Epilepsy affects some 2.7 million Americans—more than Parkinson’s disease, multiple sclerosis and amyotrophic lateral sclerosis (Lou Gehrig's disease) combined. More than half of patients can achieve seizure control with treatment, yet almost a third of people with epilepsy have a refractory form of the disease that does not respond well to existing antiepileptic drugs. Nor are these patients typically helped by the one implanted device—Cyberonics' Vagus Nerve Stimulator (VNS)—that has had U.S. Food and Drug Administration approval for treatment of epilepsy since 1997.

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Epilepsy News 
New Study Looks at Role of Inflammation in Epilepsy

In November 2008, when he was just 6, William Moller had his first epileptic seizure, during a reading class at school. For about 20 seconds, he simply froze in place, as if someone had pressed a pause button. He could not respond to his teacher.

This is known as an absence seizure, and over the next year William, now 10, who lives with his family in Brooklyn, went from having one or two a day to suffering constant seizures. Not all were absence seizures; others were frightening tonic-clonics, also known as grand mals, during which he lost consciousness and convulsed.

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New Evidence Suggests Ketogenic Diet Could Lead to New Drug Developments

A fatty diet that helps control epileptic seizures may do so by triggering a chemical change in the brain, a discovery that could lead to new treatments, according to a Harvard University study.

The diet may force a protein to switch the brain’s fuel to fat byproducts called ketones from its preferred energy, glucose, according to a study in genetically manipulated mice in the journal Neuron. Making the brain operate on ketones is known to shut down overexcited neurons that cause seizures.

This so-called ketogenic diet is used by epilepsy patients who aren’t helped by seizure-reducing drugs. The patients are only allowed a saltine cracker’s worth of carbohydrates daily, said Gary Yellen, a study author. That’s hard to do, and new treatments based on the diet’s effects in the body may lead to better control of seizures, he said.

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CURE News 
Chicago Benefit Chair Bill Daley Discusses This Year's Event

On June 15, guests at this year's Citizens United for Research in Epilepsy fund-raiser will enjoy a musical evening with a legendary singer-songwriter. Carole King will serenade partygoers with chart-topping selections from her musical career including “It's Too Late” and “(You Make Me Feel Like) A Natural Woman,” as part of the evening in celebration of CURE’s progress in fighting epilepsy.

With a goal of raising $1 million, the uplifting soiree will aid in funding research to cure epilepsy and other neurological diseases.

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CURE News  Epilepsy News 
MLB Teams up with Fradkin Family to "strike out" Epilepsy

The day's first seizure usually comes at 9:10 a.m.

Sarah Fradkin has it down to the minute, and she's powerless to stop it.

"I can't control it," Fradkin says. "I just go through the day, every day, and I just go with it."

As do about three million other Americans, 11-year-old Sarah has epilepsy. She was diagnosed with the disease after suffering her first seizure the day before she started first grade.

Though medication has helped others with epilepsy live a normal life, doctors have been unable to control Sarah's seizures. She's tried medicine, diets and even multiple brain surgeries in an effort to find a solution, but the daily episodes -- some of which can last up to three hours -- continue, costing her all-too-many precious moments of her otherwise active and ebullient youth.

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Research News 
Surgery for Epilepsy Gains Urgency in Trial

Surgery for epilepsy is usually seen as a last resort for patients when medications do not work, and it is often delayed for many years after the failure of drug treatment. Now a randomized, controlled trial suggests that surgery as soon as possible after the failure of two antiepileptic drugs is a significantly better approach than continued medical care.

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CURE News 
A Spotlight on CURE Friend Christy Shake

I intended this blog entry to be about comics on epilepsy, a particular branch of the so-called medical memoir. But instead it has turned out to be in part about parents blogging about their children's illness. Here's why.

Comics about illness tend to be family-centred: e.g. Sarah Leavitt's Tangles: A Story About Alzheimer's, My Mother, and Me, or Brian Fies's Mom's Cancer. Many of them track illness within an intimate group of those affected either directly or indirectly. One of the best-known long-form comics treating the subject of living with epilepsy is David B.'s Epileptic, originally published in six volumes in French under the title L'Ascension du Haut Mal (the rise of the high evil).

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CURE News 
CURE CEO Appointed to Illinois Medical District Commission

Cook County Board President Toni Preckwinkle today appointed Carmita Vaughan, CEO of Citizens United for Research in Epilepsy (CURE) to the Illinois Medical District Commission.

Preckwinkle cited Vaughan’s strong managerial experience, her familiarity with medical issues and healthcare, and her deep-rooted commitment to service as her main reasons for her selection for this important position.

“Ms. Vaughan’s dedication to medical research, public health and compassionate service will serve her well on the IMDC,” said President Preckwinkle.  “She will be a strong voice for improving the delivery of health care in our communities and continuing to strengthen the Illinois Medical District’s role in Cook County’s economy.”

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CURE News 
CURE Sponsors First Partners Against Mortality in Epilepsy (PAME) Conference Focusing on SUDEP

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Research News 
Autoinjectors Offer Way to Treat Prolonged Seizures

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Research News 
CURE-Funded SUDEP Project Shows Promising Results

New York, February 9, 2012 – A groundbreaking study published in Elsevier's Epilepsy & Behavior provides evidence in mouse model that drugs known as Selective Serotonin Reuptake Inhibitors (SSRIs; one category of antidepressants) may reduce the risk of Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP is estimated to be the cause of death in up to 17% of patients with epilepsy who die from their condition. Evidence for cardiac and respiratory causes of SUDEP has been presented, but no effective prevention of SUDEP has yet been developed.

Several studies have proposed that DBA mouse models of seizure-induced sudden death that are due to respiratory arrest may be useful models for respiratory-related causes of SUDEP. In these models, the generalized convulsive seizure is induced by acoustic stimuli, and the incidence of death after the seizure can be greatly reduced or prevented by providing rapid respiratory support.

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Research News 
New Gene Discovery Unlocks Mystery to Epilepsy in Infants

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CURE News  Epilepsy News 
Scott Mannis Fighting Epilepsy Through Music

Billboard
January 17, 2012

When aspiring singer Scott Mannis was 17 years old, he began periodically losing feeling in the left side of his body, specifically in his leg. It took three years for doctors to diagnose his condition as a rare form of epilepsy, whose symptoms can be minimized, but for which there is no cure.

But Mannis, now a 24-year-old astrophysics student at Columbia University, found a temporary reprieve through music. "By 2008, the seizures got bad enough that I wasn't able to walk without falling," he tells Billboard. "The only time I didn't have them was when I was singing."

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Epilepsy News 
Epilepsy Awareness: We Are Not Alone


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Research News 
CURE-Funded Project Has Major Breakthrough

Irvine, Calif., June 27, 2011 – UC Irvine and French researchers have identified a central switch responsible for the transformation of healthy brain cells into epileptic ones, opening the way to both treat and prevent temporal lobe epilepsy.

Epilepsy affects 1 to 2 percent of the world’s population, and TLE is the most common form of the disorder in adults. Among adult neurologic conditions, only migraine headaches are more prevalent. TLE is resistant to treatment in 30 percent of cases.

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CURE For questions, please contact the CURE office, 312.255.1801, or email info@cureepilepsy.org.

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