Many people with epilepsy lead productive and outwardly normal lives. Medical and research advances in the past two decades have led to a better understanding of epilepsy and seizures than ever before. Advanced brain scans and other techniques allow greater accuracy in diagnosing epilepsy and determining when a patient may be helped by surgery. More than 20 different medications and a variety of surgical techniques are now available and provide good control of seizures for most people with epilepsy. Other treatment options include the ketogenic diet and the first implantable device, the vagus nerve stimulator. Research on the underlying causes of epilepsy, including identification of genes for some forms of epilepsy and febrile seizures, has led to a greatly improved understanding of epilepsy that may lead to more effective treatments or even new ways of preventing epilepsy in the future.
Where can I get more information?
For more information on neurological disorders or research programs funded by
the National Institute of Neurological Disorders and Stroke, contact the
Institute's Brain Resources and Information Network (BRAIN) at:
Information also is available from the following organizations:
Citizens United for Research in Epilepsy (CURE) 730 N. Franklin Suite 404 Chicago, IL 60610 info@CUREepilepsy.org http://www.CUREepilepsy.org Tel: 312-255-1801 Fax: 312-255-1809
Non-profit grassroots organization formed by parents and families to raise
funds for epilepsy research.
Epilepsy Foundation 8301 Professional Place Landover, MD 20785-7223 postmaster@efa.org http://www.epilepsyfoundation.org Tel: 301-459-3700 800-EFA-1000 (332-1000) Fax: 301-577-2684
National charitable organization dedicated to the welfare of people with
epilepsy. Works for children and adults affected by seizures through education,
advocacy, services, and research towards a cure. Offers a Legal Defense Program
through a fund.
Epilepsy Institute 257 Park Avenue South New York, NY 10010 website@epilepsyinstitute.org http://www.epilepsyinstitute.org Tel: 212-677-8550 Fax: 212-677-5825
Non-profit organization that provides comprehensive social services and
resources for people with epilepsy and their families.
Parents Against Childhood Epilepsy (PACE) 7 East 85th Street Suite A3 New York, NY 10028 pacenyemail@aol.com http://www.paceusa.org Tel: 212-665-PACE (7223) Fax: 212-327-3075
Non-profit research resource that provides information and support to
families of children with epilepsy.
Family Caregiver Alliance/ National Center on
Caregiving 180 Montgomery Street Suite 1100 San Francisco, CA 94104 info@caregiver.org http://www.caregiver.org Tel: 415-434-3388 800-445-8106 Fax: 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.
National Council on Patient Information and Education 4915 St. Elmo Avenue Suite 505 Bethesda, MD 20814-6082 ncpie@ncpie.info http://www.talkaboutrx.org Tel: 301-656-8565 Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective
medicine use through better communication. Additional website is
www.bemedwise.org.
National Family Caregivers Association 10400 Connecticut Avenue Suite 500 Kensington, MD 20895-3944 info@thefamilycaregiver.org http://www.thefamilycaregiver.org Tel: 301-942-6430 800-896-3650 Fax: 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.
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 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.
International RadioSurgery Association 3002 N. Second Street Harrisburg, PA 17110 office1@irsa.org http://www.irsa.org Tel: 717-260-9808 Fax: 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.
Charlie Foundation to Help Cure Pediatric Epilepsy 1223 Wilshire Blvd. Suite #815 Santa Monica, CA 90403 ketoman@aol.com http://www.charliefoundation.org Tel: 800-FOR-KETO (367-5386) 310-395-6751 Fax: 310-393-1978
Non-profit organization that raises money for scientific research focusing on
the ketogenic diet. Offers education programs and materials for families and
dieticians.
Epilepsy Therapy Development Project 11921 Freedom Drive Suite 730 Reston, VA 20190 EpilepsyCure@aol.com http://www.epilepsytdp.org Tel: 703-437-4250 Fax: 703-437-4288
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.
Antiepileptic Drug Pregnancy Registry MGH East, CNY-149, 10th Floor 149 13th Street Charlestown, MA 02129-2000 ebaldwin@partners.org http://www.aedpregnancyregistry.org Tel: 888-AED-AED4 (233-2334) Fax: 617-724-8307
Registry designed to determine what therapies are associated with increased
risk of harmful fetal effects. Participation is confidential.
SOURCE: National Institute of Neurological Disorders and Stroke, National
Institutes of Health
SOURCE:
National Institute of Neurological Disorders and Stroke
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