Epilepsy Resources

Organizations

American Epilepsy Society (AES)

The American Epilepsy Society is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy.

342 North Main Street
West Hartford, CT 06117-2507
Phone: 860.586.7505
Fax: 860.586.7550
www.aesnet.org

Center for Disease Control and Prevention (CDC)

1600 Clifton Rd.
Atlanta, GA 30333, USA
800-CDC-INFO (800-232-4636)
TTY: (888) 232-6348
cdcinfo@cdc.gov
http://www.cdc.gov/

Charlie Foundation to Help Cure Pediatric Epilepsy

Non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians.

1223 Wilshire Blvd.
Suite #815
Santa Monica, CA 90403
ketoman@aol.com
http://www.charliefoundation.org
Tel: 310-393-2347
Fax: 310-453-4585

Citizens United for Research in Epilepsy (CURE)

CURE Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

223 W. Erie, Suite 2SW
Chicago, IL, 60654
(800) 765-7118, (312) 255-1801
info@CUREepilepsy.org
www.CUREepilepsy.org

Dravet.org

A global partnership of parents and medical experts united in the goal of improving treatments for children with Dravet (Syndrome), Spectrum Disorders, while empowering families to cope with the daily challenges of this disorder.

P.O. Box 66599
Baltimore, MD 21239-6599 USA
866-828-1843
info@Dravet.org

The Epilepsy Foundation of America

The Epilepsy Foundation of America® is the national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families.

8301 Professional Place
Landover, MD 20785-7223
Telephone: 1-800-332-1000
Fax: 1-301-577-2684
http://www.epilepsyfoundation.org/
Email:ContactUs@efa.org

Epilepsy Therapy Project

A nonprofit corporation that works to advance new treatments for people living with epilepsy. It supports innovative research in academia and industry. It provides information through the www.epilepsy.com website.

P.O. Box 742
10. N. Pendleton Street
Middleburg, VA 20118
Tel: 540-687-8077
Fax: 540-687-8066
Email:info@epilepsytherapyproject.org
http://www.epilepsy.com

The Hemispherectomy Foundation

The Hemispherectomy Foundation, a 501(c)(3) non-profit organization, was founded to provide emotional, financial, and educational support to individuals and their families who have undergone, or will undergo, a hemispherectomy or similar brain surgery.

P.O. Box 1239
Aledo, Texas 76008
www.hemifoundation.org

International League Against Epilepsy

ILAE’s mission is to ensure that health professionals, patients and their care providers, governments, and the public world-wide have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy.

342 North Main Street
West Hartford, CT 06117-2507
Tel: 860.586.7547
Fax: 860.586.7550
http://www.ilae.org/

Intractable Childhood Epilepsy Alliance

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.

P.O. Box 365
6360 Shallowford Road
Lewisville, NC 27023
info@ice-epilepsy.org
http://www.ice-epilepsy.org
Tel: 336-946-1570
Fax: 336-946-1571

National Institute of Neurological Disorders and Stroke (NINDS)

NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424 or (301) 496-5751
www.ninds.nih.gov

Pregnancy Registry


A Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.
Massachusetts General Hospital


121 Innerbelt Road Room 220
Somerville, MA 02143
info@aedpregnancyregistry.org
http://www2.massgeneral.org/aed/
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307

SUDEP Aware


Sudep Aware is a not-for-profit organization, founded in 2008 and run by dedicated volunteers based in Toronto. Our mission is to promote knowledge and understanding of Sudden, Unexpected Death in Epilepsy (SUDEP).


Suite 350
283 Danforth Avenue
Toronto, Ontario
M4K 1N2
CANADA
[001] 416 556-8770
http://www.sudepaware.org/
info@sudepaware.org

 

Selected Bibliography

Americans with Disability Act, United States Government, http://www.ada.gov/, accessed August 2012.
Christopherson, Sara Cohen (2012). Living with Epilepsy, Minneapolis: ABDO Publishing Company.

CURE: Citizens United for Research in Epilepsy. CURE Foundation. http://cureepilepsy.org/, accessed August 2012.

Epilepsy.com, www.epilepsy.com/, accessed June, 2012.

Epilepsy Foundation, Epilepsy Foundation, http://www.epilepsyfoundation.org/ June, 2012.

Gay, Kathlyn and Sean McGarrahan (2002). Epilepsy: The Ultimate Teen Guide, Lanham, MD: Scarecrow Press.

Institute of Medicine, Epilepsy Across the Spectrum, Promoting Health and Understanding, http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum.aspx, accessed July 2012.

Living Well with Epilepsy, Jessica Keenan Smith, http://www.livingwellwithepilepsy.com/, accessed June 2012.

National Institute of Neurological Disorders and Stroke, NINDS Epilepsy Information page, http://www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm/, accessed June 2012.

Parks, Peggy J. (2012). Epilepsy, San Diego: Reference Point Press.

Video Jug, Series on Epilepsy, http://www.videojug.com/interview/simple-partial-seizures-2, accessed July 18, 2012.