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Reach Out Resource Guide
This Guide Includes:
National Organizations Dedicated to
Addressing Epilepsy
Government Agencies
Centers for Disease Control and Prevention (CDC)
CDC, an agency of the U.S. Department of Health and Human Services, promotes
health and quality of life by preventing and controlling disease, injury,
and disability. Within CDC, the National Center for Chronic Disease
Prevention and Health Promotion is charged with preventing death and
disability from chronic diseases and with promoting maternal, infant, and
adolescent health and healthy personal behaviors. The CDC's epilepsy program
conducts epilepsy program activities in improving
care, improving communication and combating stigma, self-management,
surveillance and prevention research, increasing public awareness and
knowledge, and strengthening partnerships.
CENTERS FOR DISEASE CONTROL AND PREVENTION
National Center for Chronic Disease Prevention and Health Promotion
4770 Buford Highway, N.E., MS K51
Atlanta, GA 30341–3724
www.cdc.gov/epilepsy
National Institute of Neurological Disorders and Stroke (NINDS)
NINDS is an agency of the U.S. Department of Health and Human Services and a
component of the National Institutes of Health. It is the leading supporter
of biomedical research on disorders of the brain and nervous system.
NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE
National Institutes of Health
Building 31, Room 8A-06
Bethesda, MD 20892
(800) 352–9424
www.ninds.nih.gov
Health Resources and Services Administration (HRSA)
HRSA is an agency of the U.S. Department of Health and Human
Services. Its mission is to improve and expand access to quality health care
for all, including people with epilepsy.
HEALTH RESOURCES AND SERVICES ADMINISTRATION
Maternal and
Child Health Bureau
Division of Services for Children with Special Health
Needs
Integrated Services Branch, 18A-18
Rockville, MD 20857
(301) 443-2170
www.hrsa.gov
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Non-Government Agencies
Epilepsy Foundation (EF)
EF is a
national organization that conducts research and provides education,
advocacy, and other services for people living with epilepsy. The EF Web
site offers detailed information on all aspects of epilepsy as well as on
EF's programs and services, news, and publications.
EF state affiliates
provide services on the local level in many communities. Some EF affiliates
have support groups specifically for parents. For a complete listing of
state affiliates or to find the one closest to you, please contact the EF.
EPILEPSY FOUNDATION
8301 Professional Place East
Landover, MD 20785
(800) 332–1000
www.epilepsyfoundation.org*
EF eCommunities
EF provides e-communities that
allow for online chats and dialogue among common interest groups including
parents of teens with epilepsy. For a listing of groups or to join a group,
please visit www.epilepsyfoundation.org/ecommunities.*
EF Resource Library
EF
provides an extensive resource library on its Web site. All topics related
to epilepsy including searches and information (for free or for a nominal
fee to covering copying costs) are posted. Resources include the following:
- EpilepsyUSA—EF's
bimonthly magazine and a good resource for finding out about advances in the
medical and research fields, upcoming EF events, and the lives of people,
including young people living with epilepsy.
- Epilepsy: Part of Your Life—Offers guidance on medical treatment and
advice for living a healthy life, adjusting to epilepsy, reducing the
frequency of seizures, and understanding associated feelings.
- Answers to Your Questions About Epilepsy—Written for teens. Includes
answers to teens' questions on why taking medicine on time is so
important; the interactions and dangers of mixing medicine, drugs, and
alcohol; and the use of birth control.
- Epilepsy: Questions and Answers About Seizure Disorders—Offers answers
to questions about epilepsy, seizures, first aid, treatment, daily life,
and the EF.
- Safety and Seizures: Tips for Living with Seizure Disorders—Reviews
safety issues that may arise when seizures occur.
- Medicines for Epilepsy—Discusses various types of medication.
- Surgery for Epilepsy—Covers current surgical treatment and testing
that precedes surgery.
- Issues & Answers. Exploring Your Possibilities: A Guide for Teens and
Young Adults With Epilepsy.
American Epilepsy Society
This national society promotes research and education for professionals
dedicated to the prevention, treatment, and cure of epilepsy.
AMERICAN EPILEPSY SOCIETY
342 North Main Street
West Hartford, CT 06117–2507
(800) 586–7505
www.aesnet.org* National
Association of Epilepsy Centers (NAEC)
The NAEC is a nonprofit trade association whose members include more than
60 specialized epilepsy centers across the United States. This association
can help you find an epilepsy center close to your home.
NATIONAL ASSOCIATION OF EPILEPSY CENTERS
5775 Wayzata Boulevard
Suite 200
Minneapolis, MN 55416
(612) 525–4526
www.naecepilepsy.org*
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Brochures, Guides, and Newsletters
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Sibling Support Organizations
Sibling Information Network
349 Glenbrook Road
Storrs, CT 06269
(860) 486–4985
Siblings for Significant Change
350 Fifth Avenue
New York, NY 10018
(212) 643–2663
Siblings of Disabled Children Parents Helping Parents, Inc.
3041 Olcott
Santa Clara, CA 95054
(408) 727–5775
Sibling Support Project of the ARC in the United States
6512 23rd Avenue, N.W. #213
Seattle,WA 98117
(206) 297–6368
http://www.siblingsupport.org/*
The Sibling Support Project can help you locate or start up a sibling
group for area children with disabilities. It also provides a database of
more than 350 sibling groups and programs nationwide.
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Books
- Parent's Guide to the Teenage Years by B. B. Williamson
- Teenagers & Parents: Ten Steps for a Better Relationship by Roger W.McIntire
- Parenting Teens With Love & Logic: Preparing Adolescents for
Responsible Adulthood by Jim Fay and Foster W. Cline
- Epilepsy: Questions and Answers by J.W. Sanders and Yvonne Hart
- Epilepsy: 199 Answers (A Doctor Responds to His Patients' Questions) by
Andrew N. Wilner, M.D.
- Growing Up With Epilepsy: A Practical Guide for Parents by Lynn
Bennett Blackburn, Ph.D.
- The Official Patient's Sourcebook on Seizures and Epilepsy: A
Revised and Updated Directory for the Internet Age published by Icon
Health Publications
- Epilepsy: The Ultimate Teen Guide by Kathlyn Gay and Sean McGarrahan
- Let's Talk About Epilepsy by Melanie Apel Gordon
- Women with Epilepsy: A Handbook for Health and Treatment Issues by
Martha J. Morrell, M.D.
- Epilepsy and the Family: A New Guide (1999 edition) by Richard Lechtenberg, M.D.
- Epilepsy: Patient and Family Guide by Orrin Devinsky, M.D.
- Epilepsy: You're Not Alone by Stacey Chillemi
- Epilepsy and Seizures: Everything You Need to Know by Donald Weaver, M.D.
- The Last Book in the Universe by Rodman Philbrick
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Health Web Sites
In addition to the previously listed resources with Web sites, the following
Internet sites may be helpful in finding out more about epilepsy and parenting.
Epilepsy
Parenting
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Addressing Teen Issues
Even though your teen has epilepsy, you'll be faced with discussing
"traditional" teen issues that arise for any parent of a teen. The following
Web site resources may be of help to you:
- The Partnership for a Drug-Free America http://www.drugfreeamerica.com
Includes free brochure titled "Tips For Raising Drug- Free Teens" to
help parents monitor their kids and be proactive in their lives. Also
encourages parents to learn about drugs that are popular among teens and
to know the dangers of these drugs. Parents will also find information on
the increasingly popular and dangerous illegal drug Ecstasy—complete with
descriptions, slang terms, and warning signs of abuse.
- Advocates for Youth*
Collection of pamphlets, activities, multimedia reviews, and resource
listings to answer parents' questions about talking with adolescents about
sexuality.
- Palo Alto Medical Foundation Teen Health Series*
Provides young people with medically accurate information and resources
about their health—in one convenient location. A resource for discussing
sex with your teen.
- Talking with Kids About Tough Issues*
sponsored by the Kaiser Family Foundation
Includes discussion tips on teen topics, including violence in the
media, violence among friends and in relationships, and teen sexuality.
Resources are provided and brochures can be downloaded.
- The National Parenting Center "Parent Talk"
http://www.tnpc.com/parentalk/adoles.html
Includes articles from experts on talking to teens about peer pressure,
body image, sex, drug abuse, alcohol, and other topics.
- Public Broadcasting System "Talking with your Teen"*
Provides a wealth of information on teens and changes to expect through
the adolescent period.
-
National Institutes of Mental Health (NIMH)
Children and Adolescents
Includes information on mental disorders such as depression, anxiety,
learning disabilities, and eating disorders. Articles are related to
children/teens and include definitions, warning signs, and information on
how to talk to your kids about mental health issues and treatment
options. Also includes summaries of clinical research conducted at NIMH,
teen violence prevention, and other interesting teen issues.
- Teens and Depression
http://www.about-teen-depression.com
Includes tips for talking to teens about depression, warning signs, and
treatment options.
High School and Post High School Planning
For information on issues
related to high school and post high school planning, the following
resources may be of help to you:
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Additional Resources
Parent to Parent
Local affiliates of parents and parental advocates. Each state offers
something different to parents—some offer online services and others offer
weekly columns. To learn more about what your state's Parent to Parent
program offers, please visit:
http://www.p2pusa.org/Bottom_AltPage.html*
Families & Advocates Partnership for Education (FAPE)
FAPE works with the Epilepsy Foundation to inform families about the
Individuals with Disabilities Education Act of 1997 (IDEA '97) so that
children with disabilities can reach their full potential. The site includes
a listing of parent training and information centers and community groups in
the United States.
PACER Center
8161 Normandale Boulevard
Minneapolis, MN 55437-1044
(952) 838–9000
www.fape.org*
Parent Advocacy Coalition of Educational Rights (PACER)
PACER serves in Minnesota and its Web site lists PACER equivalents around
the country. The mission of PACER is to expand opportunities and enhance the
quality of life of children and young adults with disabilities and their
families based on the concept of parents helping parents.
PACER Center
8161 Normandale Boulevard
Minneapolis, MN 55437-1044
(952) 838–9000
www.pacer.org*
National Information Center for Children and Youth with Disabilities (NICHCY)
This national information and referral center provides information on
disabilities and disability-related issues for families, educators, and
other professionals focusing on children and youth. This site provides a
list of some of the resources available in your state.
National Information
Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC
20013
(800) 695–0285
www.nichcy.org*
HEATH Resource Center (a division of the
American Council of Education)
Write HEATH or call its toll-free number
below for information about higher education and adult training for people
with disabilities.
HEATH
The George Washington University
HEATH Resource
Center
2121 K street, NW Suite 220
Washington, DC 20037
(800) 544–3284
General Information Databases
MedlinePlus
Includes extensive information from the National Institutes of Health and
other trusted sources on more than 600 diseases and conditions. There are
also lists of hospitals and physicians, a medical encyclopedia and
dictionary, health information in Spanish, extensive information on
prescription and nonprescription drugs, health information from the media,
and links to thousands of clinical trials. MedlinePlus is updated daily and
can be bookmarked.
healthfinder®
An
award-winning federal Web site developed by the U.S.Department of Health and
Human Services together with other federal agencies. Since 1997,
healthfinder® has been recognized as a key resource for finding the best
government and nonprofit health and human services information on the
Internet. healthfinder® links to carefully selected information and Web
sites from more than 1,800 health-related organizations.
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Resources in Spanish
healthfinder®
Healthfinder® es una guía gratuita a la información confiable de la salud,
desarrollada por el Departamento de Salud y Servicios Humanos de los Estados
Unidos (U.S.Department of Health and Human Services). Este sitio proporciona
un índice de uso fácil para búsquedas sobre información de la salud, que ha
sido cuidadosamente revisada y que proviene de más de 1,800 agencias
gubernamentales, organizaciones sin fines de lucro y universidades.
New York
On-Line Access to Health (NOAH)*
NOAH supports both English and
Spanish that allows NOAH to serve the Spanish-speaking population of health
consumers. "NOAH aspira proporcionarle al consumidor información sobre la
salud que sea de alta calidad, oportuna, precisa, pertinente e imparcial."
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* Links to non-Federal organizations are
provided solely as a service to our users. Links do not constitute an
endorsement of any organization by CDC or the Federal Government, and none
should be inferred. The CDC is not responsible for the content of the individual
organization Web pages found at this link.
Date
last modified: July 10, 2008
Date last reviewed: January 7, 2009
Content source: Division of Adult
and Community Health, National Center for Chronic Disease Prevention and
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