Living with epilepsy and seizure disorders can be challenging for patients, their families, and caregivers. Many resources are available to provide help, more information, and support for each unique situation.
Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. The organization was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. Unwilling to sit back, they joined forces to spearhead the search for a cure.
Since its inception in 1998, CURE has been at the forefront of epilepsy research, raising more than $32 million to fund research and other initiatives that will lead the way to a cure for epilepsy. CURE funds grants for young and established investigators and has awarded more than 190 cutting-edge projects in 15 countries around the world to date. CURE’s signature programs include the Epilepsy Genetics Initiative (EGI), Infantile Spasms Initiative and a program on the prevention and treatment of Post-Traumatic Epilepsy (PTE). The leader in Sudden Unexpected Death in Epilepsy (SUDEP) research, CURE has awarded 27 SUDEP-related grants, totaling more than $3 million, since 2004. Learn more at cureepilepsy.org.
To meet the needs of Veterans suffering from post-traumatic epilepsy, the Department of Veterans Affairs created the Epilepsy Centers of Excellence (ECoE), located at 16 sites across the VA healthcare system that are organized into four regional centers. The ECoE’s mission is to improve the health and well-being of Veterans with epilepsy and seizure disorders through the integration of clinical care, outreach, research, and education.
Traumatic brain injury (TBI) has been labeled the signature injury of the Global War on Terror. According to the Department of Defense, nearly one-third of all combat Veterans suffer some form of TBI, amounting to over 300, 000 cases of TBI since 2000. This is arguably one of the greatest health care challenges currently facing Veterans. TBI can produce a variety of disabling symptoms, including epileptic seizures. TBI is the most common cause of epilepsy in people ages 18-45. The risk of developing seizures depends on the severity of the TBI, and 10-15 percent of people who suffer a severe TBI (i.e., loss of consciousness or amnesia for more than 24 hours or any bleeding in the brain) will develop epileptic seizures. The incidence of epilepsy is even greater for combat Veterans who suffer a penetrating head injury, such as a gunshot wound, and approximately 50 percent of people with this type of injury will experience epileptic seizures.
In an effort to address the stigma of epilepsy and educate Veterans, their caregivers and the general public about living with epilepsy, the ECoE have developed a video series titled “Veterans and Epilepsy: Basic Training” now available on the YouTube playlist. Each video in the series features a Veteran sharing his or her personal experiences and unique challenges balancing the medical, personal and social aspects associated with having recurring seizures. The goal of the video series is to promote public awareness of the impact of epilepsy in the lives of Veterans and to convey that these patients are able to live full, productive, successful lives.
If you or someone you know is a Veteran with seizures interested in seeking services at one of the Epilepsy Centers of Excellence, please speak with your local primary care provider or neurologist. Your health care provider will be able to determine if you might benefit from the services provided by the ECoE and assist you with scheduling an appointment. For more information, please email [email protected] or visit the VA epilepsy website at www.epilepsy.va.gov.
The Epilepsy Foundation, a national non-profit with nearly 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit www.epilepsy.com.
Sudden Unexpected Death in Epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP.
The Epilepsy Foundation’s mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. A national non-profit with nearly 50 local organizations throughout the United States, the Foundation has led the fight against seizures since 1968. It is an unwavering ally for individuals and families impacted by epilepsy and seizures. Learn more at epilepsy.com.
FACES (Finding A Cure for Epilepsy and Seizures) is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center. FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers who live with the challenges of epilepsy. The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. Our goal is to find a cure.
The Kant Institute is a bi-partisan, 501(c)(3) organization dedicated towards the fostering of public learning and the creation of a national discussion surrounding key domestic and international issues. The Institute follows the motto of “sapere aude” or “dare to be wise” and seeks to act not as a teacher, but as a stimulus of critical thinking for the individual. Through innovative research, grassroots advocacy, and discussions that span the breadth of views on subject matter, we hope the average member of society can dare to be wise and confront issues that should garner our nation’s attention. It is the hope to create an open forum for the big thinkers of the next generation.
Hidden Truths Project (HTP), an initiative of TKI, is a program utilizing art as both a tool and a way of learning. The focus in its 2012 inception was the area of epilepsy with the purpose of abolishing barriers and misconstrued biases to educate and to create understanding and acceptance of this condition. Through its affiliation with TKI, it has taken on a new role: expanding its mission to other challenging situations confronting today’s society.
Art from the HTP, Hidden Truths, the Mind Unraveled created by artists living with epilepsy is featured in the documentary SEIZED: Inside the Mystery of Epilepsy. Learn more about The Kant Institute’s Hidden Truths Project at kantinstitute.com.
The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and support for individuals living with LGS and their families.
The LGS Foundation is based in New York City and provides services and information to thousands of members across the world.
- Are You Living with a Rare Epilepsy? If you or your loved one has been diagnosed with a rare epilepsy, enroll in the Rare Epilepsy Network (REN). Your participation may help researchers understand your rare epilepsy; help researchers identify individuals at risk; help others obtain an early diagnosis and avoid delayed or misdiagnosis; find better treatments for your rare epilepsy; unlock the cause and lead to the cure for your rare epilepsy; and, improve the quality of care for people living with your rare epilepsy. The more patients that join the REN, the more information we will have about each rare epilepsy and the faster epilepsy researchers will be able to understand their cause, improve treatments and develop cures!
- Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis. Obtaining a correct diagnosis can take months and even years and often involves incorrect diagnoses. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long term and frequently devastating effects of HH requires ongoing information and support.