Recent News and Publications

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."

To read more: Read the entire article

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.

To read more: Read the entire article (pdf)

White House Correspondents’ Garden Brunch Raises Funds for CURE

See the slideshow here.

Epilepsy: Raising Awareness, Saving Lives

Read the article here (pdf)

"Glee" for D.C.
Variety

A "Glee" Surprise in D.C.: As The Hill noted, "Only an event honoring Tammy Haddad could feature tributes from a White House adviser, multiple members of the media, and the cast of 'Glee.'"

Haddad, producer and media consultant, was honored at the Newseum on Wednesday by CURE -- Citizens United for Research in Epilepsy, hosted by the org's founder Susan Axelrod and one of its board members, Connie Milstein.

To read more click here.

Sudden Unexpected Death in Epilepsy: This rare disorder is a call to arms for doctors and patients to control seizures

John Travolta's 16-year-old son, Jett, who suffered from uncontrolled seizures, died suddenly on Jan. 2, 2009, while on vacation with his family in the Bahamas. After an autopsy, “seizure” was listed as the cause of death. Later that year, in another heart-wrenching case, Steve Wulchin went to wake his 19-year-old son, Eric, and found him lying on the floor of their home in Boulder, CO. Eric, whose last seizure was six months before, had died unexpectedly during the night.

To read more click here.

Few Birth Defects Seen With Newer Seizure Drugs

The use of the newer-generation antiepileptics during the first trimester of pregnancy was not associated with an increased risk of major birth defects, a large population-based cohort study found.

Among infants exposed to any of the newer antiepileptics, 3.2% had major birth defects, as did 2.4% of unexposed infants, according to Ditte Mølgaard-Nielsen, MSc, and Anders Hviid, DrMedSci, of Statens Serum Institut in Copenhagen.

To read more click here.

Tracy Dixon-Salazar - A Mother's Love
CDMRP

April 21, 2011 – Fifteen years ago, Tracy Dixon-Salazar had never heard of epilepsy. Today, she has a Ph.D. in Neurobiology and works at an epilepsy research lab at the University of California-San Diego.

Her achievement and accomplishment came at a price, however - Tracy's daughter, Savannah, suffers from Lennox-Gastaut Syndrome, a childhood epilepsy. What began as an effort to read and learn more of her daughter's condition became a pursuit of a college degree, then graduate school.

"To this day, we have no idea why Savannah went from being a healthy, developing little girl to having all her potential robbed from her by uncontrollable seizures," Tracy said. "No medical test has ever yielded a cause for her seizures, and as her Mother, this torments me. I will never give up looking, though, and I have committed my life to helping future children who suffer from this have a brighter future."

To read an update on Tracy and Savannah: click here

FDA Accepts Lundbeck Inc. Submission of New Drug Application for Clobazam
March 4, 2011

Lundbeck Inc. today announced the U.S. Food and Drug Administration (FDA) has accepted for review a New Drug Application (NDA) for the investigational compound clobazam as adjunctive therapy in treating seizures associated with Lennox-Gastaut syndrome (LGS) in patients two years and older. The filing was assigned a standard review and an action letter is anticipated in October 2011. Additionally, Lundbeck announced Onfi™ (pronounced “on-fee”) as the proposed U.S. trade name for clobazam.

To read more: Read the entire article (pdf)

Susan Axelrod: Chicagoan of the Year 2010
Chicago Magazine,
January, 2011

In 1981, Susan Axelrod was a young mother tending to her seven-month-old baby, A doted-on firstborn. The baby, Lauren, was healthy and bouncy—and then one day she developed a cold. The next day, Lauren had a seizure, and another and another. The epileptic seizures, which continued for 18 years, caused significant developmental delays, and no cause has ever been identified. The lives of the Axelrod family changed forever.

Julius Caesar is said to have been afflicted with epilepsy, yet more than 2,000 years later, the disease remains in large part a mystery. Today more than 3 million Americans suffer from the seizure disorder, which has been called the neglected stepchild of neurological diseases. It causes 50,000 deaths a year in the United States—about the same as breast cancer.

To read more: Read the entire article online

Epilepsy Physicians Honor Founder & Chair Susan Axelrod

San Antonio, December 6, 2010 —Susan Axelrod, Chair and founder of Citizens United for Research in Epilepsy (CURE) was honored today by the American Epilepsy Society (AES) for her unprecedented leadership and influence in raising awareness of the prevalence and devastation of epilepsy and seizures, and the urgent need for research to find a cure.

Axelrod was presented with the Society’s Award for Extraordinary Contributions in the Field of Epilepsy. The award recognizes her exhaustive efforts for patients and their families—fund raising for research, promoting advocacy activities at both local and national levels, and contributing to stronger communications and coordination among patient advocacy groups.

To read more: Read the entire article online

Even as stigma abates, epilepsy lags in research and funding
Boston Globe,
November 5, 2010

RESEARCHERS HAVE made progress in understanding Parkinson’s disease and Alzheimer’s, but less so in the case of another common neurological disease, epilepsy. This is a source of great anguish to the 3 million patients and their families coping with seizure disorders, which can range from temporary attacks to lifelong — and often life-ending — bouts with the disease. Advocates for epilepsy sufferers have removed some of the stigma from a disease once seen as demonic possession. Now, the challenge is to get the federal government and private groups to fund more research into its causes.

To read more: Read the entire article online

Mom on a Mission
Parent & Child Magazine, November 2010

According to the Centers for Disease Control and Prevention, about 1 percent of the U.S. population suffers from epilepsy, a medical condition characterized by seizures. Every year, however, 120,000 children under the age of 18 develop the disorder. To better understand the nature of epilepsy, P&C spoke with Susan Axelrod, chair of CURE: Citizens United for Research in Epilepsy (and wife of David Axelrod, senior advisor to President Obama). Mrs. Axelrod founded CURE in 1998 after numerous treatments proved ineffective with her daughter, Lauren, during her childhood. Lauren is now 29 and has been seizure-free for ten years, but remains developmentally impacted.

To read more: Read the entire article (pdf)

New Epilepsy Funding Opportunities at NINDS

We are excited to bring the following announcement to your attention. This is the first RFP to come from the new initiative "Accelerating Research in the Epilepsies,” which we announced last month.

NINDS Epilepsies EUREKA Program

The National Institute of Neurological Disorders and Stroke is seeking applications proposing exceptionally innovative research that could have a transformative effect on biomedical or biobehavioral research in the epilepsies. These disorders involve disruption of basic neurobiological functions at all levels, including cellular/molecular biology and genetics, cognitive/behavioral and systems neuroscience, neuroplasticity, and neurodevelopment. Investigators from outside the field of epilepsy are strongly encouraged to submit applications to this funding opportunity announcement that apply knowledge from these areas to bring potentially paradigm-shifting approaches to the study and/or treatment of the epilepsies.

To read more: Read the entire article online

Landmark Clinical Trial for Childhood Absence Epilepsy Fills Large Information Gap

CURE would like to call attention to a landmark clinical trial, which has established an initial drug therapy for childhood absence epilepsy—the most common form of childhood epilepsy. The study—lead by Tracy A. Glauser, MD, director of the Comprehensive Epilepsy Center at Cincinnati Children’s Hospital Medical Center—is the largest pediatric epilepsy clinical trial ever funded by the National Institute of Neurological Disorders and Stroke (NINDS), of the National Institutes of Health (NIH).

To read more: Read the entire article online

Don’t Miss Rock the Block for Pediatric Epilepsy Research

It was a sheer act of serendipity that brought Kathy Dodd and Stacey Pigott together. About 4 years ago, Pigott moved to the same Wilmette street where Dodd lives.

The neighbors soon learned that they shared one common thread: They are mothers of children with epilepsy.

Frustrated by the lack of research dedicated to pediatric epilepsy, the women were inspired to do something about it. In 2008 they started Rock the Block for Pediatric Epilepsy Research, which is hosting a fundraiser on Saturday, October 16 at the Chicago Illuminating Company.

To read more: Read the entire article online

CURE Names New CEO

CHICAGO. -- Chicago-based nonprofit Citizens United for Research in Epilepsy (CURE) announced today that Carmita Vaughan has been selected as the organization’s new Chief Executive Officer effective November 1, 2010.

Prior to her new role at CURE, Vaughan served as Chief Strategy Officer of America’s Promise Alliance, a youth development organization founded by General Colin Powell and currently led by Alma J. Powell.

To read more: Read the entire article online

The Huffington Post: Susan Axelrod, Connie Milstein Host CURE Epilepsy Event

To read more: Read the entire article online

The Hill: CURE Honors Tammy Haddad

To read more: Read the entire article online

Axelrod-Milstein Team Up for Epilepsy Research

To read more: Read the entire article online

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

A Storm in the Brain
Newsweek,
April 11, 2009

The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives. A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person's consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes. By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population.

To read more: Read about the entire Newsweek coverage here

'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)