Recent News and Publications

FDA Panel Says Yes to Epilepsy Drug

SILVER SPRING, Md. -- An FDA advisory committee voted 13-0 Wednesday that ezogabine (Potiga) is an effective adjunctive treatment for epilepsy patients with partial-onset seizures.

The vote wasn't surprising. In fact, Russell Katz, MD, director of the FDA's neurology division, noted that although the agency almost always presents its own analysis of the sponsoring company's data at the beginning of an advisory committee meeting, "we've examined the sponsor's presentation and we have no material disagreement with the data as the sponsor intends to present it."

To read more: Read the entire article online

Chicago's Sylvia Fowles Receives WNBA Cares Community Assist Award for July

August 10, 2010--The WNBA today honored Chicago Sky center Sylvia Fowles’ commitment to the community with its WNBA Cares Community Assist Award for July. Throughout the month, Fowles has played a leadership role in the team’s community outreach, including a recent partnership with Citizens United for Research in Epilepsy (CURE). She continues to be a positive role model for youngsters in Chicago and beyond.

To read more: Read the entire article online

CURE Families and Scientists Featured in New York Times

July 27, 2010--Today brought long-overdue and much-needed public attention to one of the worst consequences of epilepsy—Sudden Unexplained Death in Epilepsy. CURE family stories were courageously represented by Steve Wulchin and Gardiner Lapham, and scientific perspectives were offered by Elizabeth Donner, MD, CURE 2009 Grantee and Scientific Advisory Board member, Jeff Noebels, MD, PhD.

Please read the story below, forward it to family, friends, neighbors, and coworkers to help raise awareness of the urgent need to advance research in epilepsy. You can also email managing-editor@nytimes.com to acknowledge and reinforce their attention to this major public health problem.

Read “Unmasking Silent Killer in Epilepsy” in the NY Times here:
http://www.nytimes.com/2010/07/27/health/27epil.html?ref=health

FDA Agrees to New Model for Epilepsy Drug Trials

The Federal Drug Administration has agreed to change the way in which clinical trials for new antiepileptic drugs are tested in individuals with epilepsy. In the past, an international agreement mandated that all epilepsy monotherapies (treatment with one drug) could be approved only with demonstration of superiority in trials using an internal, interpretable control group. The new FDA agreement will allow clinical trials to be done using so-called historical controls from previously published studies instead, and will greatly reduce the risk for individuals with epilepsy to participate in clinical trials. Because most individuals with epilepsy come into clinical trials on multiple drugs, there is a period of time during which some of the current antiepileptic medications are tapered and stopped. At that point, study participants then receive monotherapy with either the study drug or the pseudo-placebo. No longer will medications be reduced so that an individual receives a “pseudo-placebo,” making the clinical trials much safer for individuals with epilepsy. This effort was led by Jacqueline French, MD, at New York University in New York City and her colleagues.

To read more: Read the entire article online

“Glee” Star Chris Colfer’s Devotion to Sister with Epilepsy

Teenage GLEE star CHRIS COLFER spent much of his young life taking care of his severely epileptic sister before heading off to seek fame and fortune in Hollywood.

To read more: Read the entire article online

SUDEP FAQ
Questions and Answers

Q: Can people die from epilepsy?

A: Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death.

Sometimes epilepsy is a symptom of a more serious condition, such as a stroke or a tumor that carries an increased risk of death.

To read more: Read the entire article online

Huffington Post: “Help Us Bring Epilepsy Out of the Shadows”

It seems like just yesterday we were in the dark about breast cancer, Parkinson's and prostate cancer. To say that tireless efforts led by strong, unified communities have increased public awareness is an understatement. To be able to say they've afforded hope to so many where there was once very little is a blessing. I'm writing today because it's time to shed that same illimitable light on epilepsy. Why? Because it's prevalent. Because it's devastating. Because it's close to my heart.

To read more: Read the entire article online

Cell Transplantation Holds Promise for Epilepsy

Epilepsy was known in ancient times, when the Greek physician Hippocrates disparaged the popular notion that seizures arose from divine intervention. The disease has remained stubbornly mysterious, but new scientific tactics finally are helping researchers pick up the pace in solving its mysteries. New treatment ideas also are emerging.

To read more: Read the entire article online

Through Tears & Triumphs -- Living with the Consequences of Stroke and Epilepsy
Chicago Sun-Times
May 16, 2010

"Through Tears & Triumphs -- Living with the Consequences of Stroke and Epilepsy," could be the title of a one-woman stage show. There was laughter. There were tears. But most of all, there was Susan Eik Filstead, a good friend who has waged a courageous battle against the devastating effects of a stroke she suffered nearly 18 years ago.

To read more: Read the entire article online

Zach: A Film About Epilepsy
Film Threat
March 23, 2010

Christian de Rezendes, the gifted director of “Getting Out of Rhode Island” and “41,” has turned his attention and camera to the short documentary genre with “Zach, a Film About Epilepsy.”

To read more: www.filmthreat.com/reviews/20962/
To watch the video: www.cureepilepsy.org/video/zach.asp

No Way to Refer to the Vulnerable
By Randolph Siegel, Chicago Tribune
December 18, 2009

Imagine a prominent magazine, winner of a National Magazine Award for "general excellence," publishing a column that makes fun of developmentally delayed children. Or an Emmy Award-winning comedy show in which a leading character has sex with a mentally disabled woman and then mocks her disability. Or a popular Web site, with 3 million monthly visitors, that has more than 600 cruel references to "retard" on its site. No need to use your imagination, because these are just three examples of how the media elite too often ridicule the millions of Americans who are cognitively impaired due to debilitating brain disease or injury.

To read more: Read the entire article online

'Under-funded' epilepsy research has patient's mom collecting for a cure
By Kristin Russo, Valley Breeze Staff Writer

LINCOLN - LeeAnn Brigido's 19-year-old son Zach suffered his first epileptic seizure when he was six weeks old, and has endured a lifelong struggle with the neurological disease ever since.

Characterized by chronic seizures, epilepsy is a common neurological disorder marked by abnormal electrical activity in the brain. Brigido said that while the disease is common, it is often misunderstood and is drastically underfunded.

"The problem is that people who have epilepsy who respond to treatment feel a certain stigma and don't disclose that they have it. They don't advocate for themselves and so people with epilepsy don't have a voice. We don't have a superstar fighting for funding, like Parkinson's disease has Michael J. Fox. As a result, not as much research is being done as there could be," Brigido said.

Zach's struggle is compounded by the fact that he has not responded to the known treatments for epilepsy and his seizures continue to overwhelm him. "We have tried every possible treatment for him, but nothing has worked," Brigido said.

To read more: Read the entire article online

Curing Epilepsy: Progress and Future Directions

During the past decade, substantial progress has been made in delineating clinical features of the epilepsies and the basic mechanisms responsible for these disorders. Eleven human epilepsy genes have been identified and many more are now known from animal models. Candidate targets for cures are now based upon newly identified cellular and molecular mechanisms that underlie epileptogenesis. However, epilepsy is increasingly recognized as a group of heterogeneous syndromes characterized by other conditions that co-exist with seizures. Cognitive, emotional and behavioral co-morbidities are common and offer fruitful areas for study. These advances in understanding mechanisms are being matched by the rapid development of new diagnostic methods and therapeutic approaches. This article reviews these areas of progress and suggests specific goals that once accomplished promise to lead to cures for epilepsy.

To read more: Download the article (pdf)

Significant Finding in Sudden Unexplained Death in Epilepsy (SUDEP)

CURE Scientific Advisory Board member Jeffrey Noebels, MD, PhD and CURE research grant recipient Alica Goldman, MD, PhD, and collaborators have found that the most common gene for a syndrome associated with abnormal heart rhythms and sudden death triggers epileptic seizures and could explain Sudden Unexplained Death in Epilepsy.

To read more about this exciting new discovery: Click here

Where We Are in the Search for a Cure
An Interview with John Swann, PhD

The Epilepsy Benchmarks are research goals established by the epilepsy research community in collaboration with the National Institute for Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health (NIH). The Benchmarks were developed after a White House-initiated, CURE co-sponsored NIH conference in 2000, and updated following a second NIH conference in 2007. They are comprehensive and ambitious research goals deemed achievable over the next decade and aimed at finding cures.

To read more: Read the entire article online | Download the article (pdf)

Where We Are in the Search for a Cure
An Interview with Jeff Nobles, MD, PhD

I was fortunate to join the laboratory of David Prince at Stanford University, a world leader in training and launching young epileptologists. I realized I could hardly commit my life to the riddle of epilepsy without understanding the clinical disorder, and decided to go to medical school to become a neurologist. For 20 years, I have been training scientists and neurologists to consider DNA when they see a patient with seizures. every day, we look for new molecular and cellular troublemakers in the clinic and laboratory, and search for better ways to prevent or reform them.

the field of epilepsy research is vibrant and has made great strides in three key areas that improve the care of patients with epilepsy. First, detecting sites of abnormality by brain scanning is greatly enhanced; we now have stronger magnets, more pixels, faster image analysis, and astonishing 3-dimensional software. the second area is in genetics, which has revealed the striking diversity of inherited errors in genes that lead to the risk of seizures.

To read more: Read the entire article online | Download the article (pdf)

Prevention of Epilepsy After Traumatic Brain Injury

In the current wars in Iraq and Afghanistan the “signature wound” is traumatic brain injury (TBI), of which epilepsy is a common long-term consequence. Those who suffer severe head traumas face up to a 50 percent chance of developing post-traumatic epilepsy, and frequently, this chronic condition does not respond to available treatments, imposing significant ill effects on rehabilitation and quality of life. The civilian population is also at risk; TBI accounts for 5% of epilepsy.

Remarkably little is understood about post-traumatic epilepsy. Although head injury is known to put a patient at high risk for development of chronic seizures in both civilian and non-civilian populations, there is still a lack of research focused on this area. Post-traumatic seizures can develop at anytime after the injury—from within one week to fifteen years later. At this time, there is no way to prevent or cure post traumatic epilepsy.

To read more: Read the entire report online | Download the full report (pdf)

Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy

The American Epilepsy Society and the Epilepsy Foundation jointly convened a task force to assess the state of knowledge about sudden unexplained death in epilepsy (SUDEP). The task force had five charges: (1) develop a position statement describing if, when, what, and how SUDEP should be discussed with patients and their families and caregivers; (2) design methods by which the medical and lay communities become aware of the risk of SUDEP; (3) recommend research directions in SUDEP; (4) explore steps that organizations can take to perform large-scale, prospective studies of SUDEP to identify risk factors; and (5) identify possible preventive strategies for SUDEP.

To read more: Download the full report (pdf)

More than Hugs
By Randy Siegel (CURE Board Member)
Special to Newsweek
Updated: 8:28 p.m. CT Aug 23, 2007

Aug. 23, 2007 - The other night at dinner, our 10-year-old daughter, Rebecca, had what we think was her 10,000th epileptic seizure. It was a split-second drop seizure, which sucked the air out of her body and sent her head crashing face first into her plate of pasta.

As usual, Rebecca wiped the food off her face and reached out for a hug. After checking for missing teeth, my wife and I hugged her as she fought off the tears and smiled. She’s a resilient kid, but she needs more than hugs from her helpless parents. She, like millions of other people with epilepsy needs a cure for this devastating disease, which has compromised her young life despite the best efforts of her doctors, 24 unsuccessful drug trials and a dozen experimental therapies.

To read more: http://www.newsweek.com/id/56667

Epilepsy is anything but benign
by Bob and Kathy Dodd
Chicago Tribune
Originally posted: August 11, 2007

As parents of a child with epilepsy, we can tell you that there is nothing about this disorder that is "benign" ("Roberts out of hospital, but answers are lacking; Doctors often can't find cause of seizure," News, Aug. 1). Our daughter has endured hundreds of seizures, more than 20 mind-numbing medications, two surgeries, almost 100 emergency room visits and/or hospital stays and a two-year trial on a terrible high-fat diet.

Yet we have seen the word "benign" used again and again in reference to the seizure Supreme Court Chief Justice John Roberts recently suffered (his second). We can tell you firsthand that each and every seizure is potentially destructive and deadly. Ask anyone who lives with epilepsy. Ask the families who have lost loved ones. It is unacceptable that the words "benign" and "epilepsy" are being used in the same sentence.

To read more: http://newsblogs.chicagotribune.com/news_opinion_letters

Roberts out of hospital, but answers are lacking
Robert Mitchum, Chicago Tribune
Copyright 2007 Chicago Tribune

Aug. 1--Chief Justice John Roberts Jr. left a Maine hospital Tuesday, medically cleared to resume his vacation but with the mystery over the cause of his seizure the previous day still unresolved.

Seizure, a condition caused by overexcitation of the brain that can last from seconds to minutes, is a relatively common medical phenomenon. Seizures of varying degrees of severity occur in 1 out of 10 adults, according to the Epilepsy Foundation.

A Supreme Court spokeswoman has said Roberts suffered a "benign idiopathic seizure," in which neurologists find no direct cause of the seizure, such as a tumor or stroke. That diagnosis is made in roughly 70 percent of people who have suffered one or more seizures.

"Idiopathic seizures are usually related to seizure disorders that we think are genetic, somebody carrying a genetic predisposition that will occasionally, under the right circumstances, have a convulsive seizure," said Dr. John Ebersole, director of the Adult Epilepsy Service at the University of Chicago.

For people who suffer such seizures, the lack of a clear cause can be disconcerting.

"That term is scary," said Howard Zwirn, a Chicago environmental consultant and attorney who was diagnosed with epilepsy and underwent brain surgery to ease his seizures in 2004. "When I had a heavy seizure, I would go to the hospital and have my blood tested, and it would show that I had a seizure, but no source."

SUDEP (Sudden Unexpected Death in Epilepsy): A Global Conversation
Edited by Denise Chapman, Brendon Moss, Rosemary Panelli, Russell Pollard

In 1868 Bacon, an eminent physician, noted the occurrence of ‘sudden death in a fit’ and almost 40 years later Spratling, one of the earliest American neurologists, recognised epilepsy as ‘a disease which destroys life suddenly and without warning through a single brief attack.’ Despite this, in the 1960’s it was suggested that ‘there is no reason why …someone with epilepsy… should not live as long as he would if he did not have epilepsy’ (Livingstone 1963).

SUDEP is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause for death can be found, despite thorough post mortem examination and blood tests. The definition excludes people dying in status epilepticus and those who drown.

To read more: Download the full report (pdf)