The epilepsies are a spectrum of brain disorders ranging from severe, life-threatening and disabling, to ones that are much more benign. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior or sometimes convulsions, muscle spasms, and loss of consciousness. The epilepsies have many possible causes and there are several types of seizures. Anything that disturbs the normal pattern of neuron activity—from illness to brain damage to abnormal brain development—can lead to seizures. Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, changes in important features of brain cells called channels, or some combination of these and other factors. Having a single seizure as the result of a high fever (called febrile seizure) or head injury does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy. A measurement of electrical activity in the brain and brain scans such as magnetic resonance imaging or computed tomography are common diagnostic tests for epilepsy. Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. For about 70 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. Some drugs are more effective for specific types of seizures. An individual with seizures, particularly those that are not easily controlled, may want to see a neurologist specifically trained to treat epilepsy. In some children, special diets may help to control seizures when medications are either not effective or cause serious side effects.  While epilepsy cannot be cured, for some people the seizures can be controlled with medication, diet, devices, and/or surgery. Most seizures do not cause brain damage, but ongoing uncontrolled seizures may cause brain damage. It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems in conjunction with seizures. Issues may also arise as a result of the stigma attached to having epilepsy, which can led to embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings. For many people with epilepsy, the risk of seizures restricts their independence (some states refuse drivers licenses to people with epilepsy) and recreational activities.Epilepsy can be a life-threatening condition. Some people with epilepsy are at special risk for abnormally prolonged seizures or sudden unexplained death in epilepsy. Scientists are studying the underlying causes of the epilepsies in children, adults, and the elderly, as well as seizures that occur following brain trauma, stroke, and brain tumors. Ongoing research is focused on developing new model systems that can be used to more quickly screen potential new treatments for the epilepsies. The identification of genes or other genetic information that may influence or cause the epilepsies may allow doctors to prevent the disorders or to predict which treatments will be most beneficial to individuals with specific types of epilepsy. Scientists also continue to study how neurotransmitters interact with brain cells to control nerve firing and how non-neuronal cells in the brain contribute to seizures. Researchers funded by the National Institutes of Health have developed a flexible brain implant that could one day be used to treat seizures. Scientists are continually improving MRI and other brain scans that may assist in diagnosing the epilepsies and identify the source, or focus, of the seizures in the brain. Other areas of study include prevention of seizures and the role of inflammation in epilepsy.  Patients may enter trials of experimental drugs and surgical interventions.More about epilepsy research http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=epilepsy[majr]+AND+human[mh]+AND+english[la]+AND+(review[ptyp]+OR+review+literature[mh]+OR+practice+guideline[ptyp]+OR+guideline[ptyp]+OR+clinical+trials[mh]+OR+clinical+trial[ptyp]+OR+consumerj[sb])&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=1+Years http://www.nlm.nih.gov/medlineplus/epilepsy.html 1 http://clinicaltrials.gov/ct2/results?term= /disorders/epilepsy/pubs_epilepsy.htm /disorders/epilepsy/xml_epilepsy.xml xml_epilepsy.xml Seizure Disorder V586 Citizens United for Research in Epilepsy (CURE)

223 W. Erie

Suite 2 SW Chicago IL 60654 info@CUREepilepsy.org http://www.CUREepilepsy.org 312-255-1801 800-765-7118 312-255-1809 Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research. V64 Epilepsy Foundation

8301 Professional Place

Landover MD 20785-7223 postmaster@efa.org http://www.epilepsyfoundation.org 301-459-3700 800-EFA-1000 (332-1000) 301-577-2684 National charitable organization dedicated to the welfare of people with epilepsy. Works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. Offers a Legal Defense Program through a fund. V73 Family Caregiver Alliance/ National Center on Caregiving

785 Market St.

Suite 750 San Francisco CA 94103 info@caregiver.org http://www.caregiver.org 415-434-3388 800-445-8106 415-434-3508 Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs. V94 National Council on Patient Information and Education

200-A Monroe Street

Suite 201 Rockville MD 20850 ncpie@ncpie.info http://www.talkaboutrx.org 301-340-3940 301-340-3944 Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org. V75 National Family Caregivers Association

10400 Connecticut Avenue

Suite 500 Kensington MD 20895-3944 info@thefamilycaregiver.org http://www.thefamilycaregiver.org 800-896-3650 301-942-2302 Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones. V91 National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury CT 06810 orphan@rarediseases.org http://www.rarediseases.org 203-744-0100 Voice Mail 800-999-NORD (6673) 203-798-2291 Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. V78 International RadioSurgery Association

2960 Green Street

P.O. Box 5186 Harrisburg PA 17110 irsa@irsa.org http://www.irsa.org 717-260-9808 717-260-9809 Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement disorders. V276 Charlie Foundation to Help Cure Pediatric Epilepsy

515 Ocean Avenue

Suite 602N Santa Monica CA 90402 ketoman@aol.com http://www.charliefoundation.org 310-393-2347 310-453-4585 Raises money for scientific research, education and public awareness of diet therapies for epilepsy. Offers education, programs, and materials for caregivers, dietitians, physicians and hospitals. V867 Epilepsy Therapy Project

P.O. Box 742

10. N. Pendleton Street Middleburg VA 20118 info@epilepsytherapyproject.org http://www.epilepsy.com 540-687-8077 540-687-8066 Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website. V772 Antiepileptic Drug Pregnancy Registry

Massachusetts General Hospital

121 Innerbelt Road Room 220 Somerville MA 02143 info@aedpregnancyregistry.org http://www2.massgeneral.org/aed/ 888-AED-AED4 (233-2334) 617-724-8307 Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential. V922 Dravet.org

P.O. Box 66599

Baltimore MD 21239-6599 info@Dravet.org http://dravet.org 866-828-1843 Utilizing our global network of resources, we strive to empower patients and their families by providing: advocacy & awareness; education & information; patient & family support; and increased medical research. Our goal is to improve the treatment of Dravet syndrome and other related genetic, febrile sodium channel epilepsies. V936 Intractable Childhood Epilepsy Alliance

PO Box 365

6360 Shallowford Road Lewisville NC 27023 info@ice-epilepsy.org http://www.ice-epilepsy.org 336-946-1570 336-946-1571 The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will lead to a cure for intractable childhood epilepsies. V981 Hope for Hypothalamic Hamartomas (Hope for HH)

P. O. Box 721

Waddell AZ 85355 admin@hopeforhh.org http://hopeforhh.org/ Provides information and support to hypothalamic hamartoma (HH) patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and a cure. V1007 RE Children's Project

79 Christie Hill Road

Darien CT 06820 swohlberg@rechildrens.com http://www.rechildrens.org 917-971-2977 National organization devoted to increase awareness regarding Rasmussen's encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. V1022 LGS Foundation

192 Lexington Avenue

Ste 216 New York NY 10016 info@lgsfoundation.org http://lgsfoundation.org/index.html 212-802-1401 LGS Foundation is a not-for- profit organization dedicated to providing information about Lennox-Gastaut Syndrome, a rare and severe form of childhood onset epilepsy, while raising funds for research, programs, and services for individuals living with LGS, and their families.