Epilepsy and Research

Posted: March 23, 2011 in Epilepsy
Tags: , , , , ,

When my son was first diagnosed with epilepsy it was somewhat difficult learning about it and even more so to identify the research was going on.  I actually bought several text books, which were really expensive) to get myself educated.   The internet was starting to get big, but was not the great research tool we have today.  So, in the beginning I spent a couple of thousand dollars buying medical books about the subject. I am very thankful for the access we have to information about epilepsy. To possibly assist you with your search I have gather some great information about the research being done.

I have identified some information about the research that is being done in regard to epilepsy. The following link shows a list of 658 clinical trials regarding epilepsy (published on ClinicalTrials.gov): http://clinicaltrials.gov/search/term=Epilepsy

National institute of Neurological Disorders and Stroke

The National institute of Neurological Disorder and Stroke (NINDS) is a great place to learn about epilepsy and some of the areas of research. The following is a list of organizations that are in some way involved with epilepsy research:

Citizens United for Research in Epilepsy (CURE)
730 North Franklin Street
Suite 404
Chicago, IL 60654
info@CUREepilepsy.org
http://www.CUREepilepsy.org
Tel: 312-255-1801
Fax: 312-255-1809
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
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
People 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
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
National Council on Patient Information and Education
200-A Monroe Street
Suite 201
Rockville, MD 20850
ncpie@ncpie.info
http://www.talkaboutrx.org
Tel: 301-340-3940
Fax: 301-340-3944
National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD 20895-3944
info@thefamilycaregiver.org
http://www.thefamilycaregiver.org
Tel: 800-896-3650
Fax: 301-942-2302
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
International RadioSurgery Association
3002 N. Second Street
Harrisburg, PA 17110
irsa@irsa.org
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
Charlie Foundation to Help Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA 90403
ketoman@aol.com
http://www.charliefoundation.org
Tel: 310-393-2347
Fax: 310-453-4585
Epilepsy Therapy Project
P.O. Box 742
Middleburg, VA 20118
info@epilepsytherapyproject.org
http://www.epilepsy.com
Tel: 540-687-8077
Fax: 540-687-8066
Antiepileptic Drug Pregnancy Registry
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA 02129-2000
info@aedpregnancyregistry.org
http://www2.massgeneral.org/aed/
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307
International Dravet Epilepsy Action League
P.O. Box 797
Deale, MD 20751
info@IDEA-League.org
http://www.IDEA-League.org
Tel: 443-607-8267

The following links are also from NINDS and have specific information about the different types of research. Its goals in research relate to three broad categories:

Anticonvulsant Screening Program

Research Progress in Epilepsy

Discovering what happens in the brain to create epileptic seizures

The Search for Genes That Increase the Risk of Epilepsy
Research on New Ways to Observe Brain Chemistry and Function During Seizures
The Development of Animal Models that More Closely Resemble the Disease in Humans

Developing New Ways to Prevent Epilepsy

Developing New Treatments that Eliminate Seizures Without Side Effects

Antiepileptic Drugs
Sidebar: Anticonvulsant Screening Program
Surgery
Diet
Brain Stimulation
Gene Therapy
Cell Transplantation
Vaccines
Therapies to predict or interrupt seizures
Personalized therapies

Reducing the Day-to-Day Impact of Epilepsy

Quality of Life
Reproductive Issues
Comorbid Disorders
Epilepsy in Children
Epilepsy in Older Adults

 

 

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