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Epilepsy Across the Spectrum: Promoting Health and Understanding (2012) Board on Health Sciences Policy

 

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Advocacy

2-1-1 Orange County offers a comprehensive information and referral system linking Orange County residents to community health and human services and support. Callers seeking assistance can dial 211 (toll-free) 24 hours-a-day and be connected to trained, multilingual Information and Referral specialists. Accessing a database with information on more than 1,800 government and nonprofit agencies offering approximately 4,000 specialized services, these I&R specialists refer callers to the people who can address their particular needs.

Citizens United for Research in Epilepsy (CURE) was founded by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.

Dayle McIntosh Center exists to enable persons with disabilities to succeed in every area they desire and to fulfill every dream they have and to provide equal opportunity!Main Telephone Number and 24-Hour Line for All Locations (714) 796-5100 | Mailing Address for All Locations: P.O. Box 22010, Santa Ana, CA 92702-2010

Help Me Grow is available to all parents in Orange County who are interested in connecting with resources to enhance their child’s development. If you are concerned about your child’s development, behavior or learning, our team can connect you to necessary early intervention services. If you are wondering about appropriate activities for your child, we can help you find them. If you are looking for support or tips on parenting, we can help link you to those resources.

Epilepsy Advocate is community of Advocates and caregivers that lets you connect with those who share the same goal of achieving better seizure control.

Epilepsy Foundation fights to stop seizures, find a cure and overcome the challenges created by epilepsy.
Tel: 1800-332-1000; 4351 Garden City Dr, Landover, MD 20785

National Dissemination Center for Children with Disabilities offer you a wealth of information on disabilities! We serve the nation as a central source of information on disabilities in infants, toddlers, children, and youth. Here, you’ll also find easy-to-read information oIDEA, the law authorizing early intervention services and special education. Our State Resource Sheets will help you connect with the disability agencies and organizations in your state.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.

Regional Center of Orange County (RCOC) is one of 21 private, nonprofit organizations contracted by the State of California to coordinate lifelong services and supports for individuals with developmental disabilities and their families. The regional center is the first stop for those seeking to obtain local services and supports to help them live safely and with dignity in the community.

Social Security Online - The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.

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CareGiver

Brightstar Kidcare provides the full continuum of homecare, (including adult and elder care) childcare (including newborn care, babysitter and nanny services) in addition to medical staffing services for individuals, families and healthcare facilities.

Family Caregiver Alliance/ National Center on Caregiving 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.
Tel: 800-896-3650; Fax: 301-942-2302; info@thefamilycaregiver.org

National Family Caregivers Association is a coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. info@caregiver.org
Tel: 415-434-3388, 800-445-8106; Fax: 415-434-3508

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Conditions & Syndromes

Lennox-Gastaut Syndrome (LGS) is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services and support for individuals living with LGS and their families.

– Autism
The National Daniel Jordan Fiddle Foundation (DJF) is a national organization focused on adults living with Autism Spectrum Disorders (ASD).

United Cerebral Palsy (UCB) advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions. Find your local Affiliate

Unique
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them.

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Education

California Association on Postsecondary Education and Disability (CAPED) CAPED is the longest tenured organization of professionals serving students with disabilities in postsecondary education.

Epilepsy Classroom has created a program for teachers to help them bring epilepsy awareness to their class in a factual and informative manner.

Launchpad Therapy for Kids Occupational therapy is an intervention that focuses on helping children achieve independence in all areas of their lives.

Stowell Learning Center is a diagnostic, tutorial center for students with learning disabilities. In the past 20 years we have helped hundreds of students with a variety of learning challenges become successful learners.

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Employment

Goodwill Industries International enhances the dignity and quality of life of individuals, families and communities by eliminating barriers to opportunity and helping people in need reach their fullest potential through the power of work.
Find a job or Get Fit at Goodwill Fitness Center

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Epilepsy Centers - Orange County

CHOC Children's - Children's Hospital of Orange County Epilepsy Center
The CHOC Children’s Comprehensive Epilepsy Program is the regional leader in pediatric epilepsy care, offering leading-edge diagnostics, innovative medical approaches and advanced surgical interventions from the nation’s foremost epilepsy experts. CHOC Children's Mission Hospital has 4 monitoring beds.

UC Irvine Healthcare's Comprehensive Epilepsy Program - is a leader in the research and implementation of epilepsy care in the United States. The program combines specialists from various disciplines to unite their expertise and provide comprehensive care in the diagnosis and treatment of this complex disease.

HOAG's Neurosciences Institute - Hoag Epilepsy Center offers comprehensive treatment through a patient centered, integrated approach. Hoag Epilepsy Center’s multidisciplinary team of specialists utilizes the best in evidence based practice, state of the art technology and advanced research.

National Association of Epilepsy Centers
5775 Wayzata Boulevard, Suite 200, Minneapolis, MN 55416
If you are seeking the care of an epilepsy specialist, the NAEC can help. Access a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy.

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Medical INFORMATION & Research

The Epilepsy Phenome/Genome Project (EPGP) is a research study funded by the National Institutes of Neurological Disorders and Stroke. The goals are to better understand what causes epilepsy, why some families have several people with epilepsy, and how we can better predict which anti-seizure medications (or no medication) will work best for an individual.

The Epilepsy Therapy Project
Tel: 1-540-687-8077, ext. 2; P.O. Box 742, Middleburg, VA 20118
Here you'll find information all about seizures and epilepsy

National Institute of Neurological Disorders and Stroke (NIH), Epilepsy is a part of the U.S. Department of Health and Human Services External Web Site Policy , is the nation’s medical research agency—making important discoveries that improve health and save lives.

People Against Childhood Epilepsy (PACE) is a non-profit research resource that provides information and support to families of children with epilepsy.
Tel: 212-665-PACE (7223); Fax: 212-327-3075; pacenyemail@aol.com

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Medical

American Academy of Neurology was established in 1948, is an international professional association of 24,000 neurologists and neuroscience professionals dedicated to promoting the highest quality patient-centered neurologic care.

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. Tel: 1-860-586-7505; 342 North Main St, West Hartford, CT 06117-250

Centers for Disease Control and Prevention - Epilepsy Program
4770 Buford Hwy, NE, MS K-51 Atlanta, GA 30341-3717

Vagus Nerve Stimulation (VNS Therapy) is a unique non-drug treatment option—could help provide a new sense of control and independence to people living with seizure disorders.

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Medications

Talk About RX
Tel: 301-340-3940; Fax: 301-340-3944
National Council on Patient Information and Education

Charlie Foundation to Help Cure Pediatric Epilepsy is a non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians. Tel: 310-393-2347; Fax: 310-453-4585; 1223 Wilshire Blvd.Suite #815, Santa Monica, CA 90403

National Council on Patient Information and Education (NCPIE) – a nonprofit coalition of over 125 consumer, government, patient advocacy and public health organizations. NCPIE serves as a trusted source of reliable information about the proper use of medicines, and Be MedWise seeks to promote a better understanding that over-the-counter (OTC) drug products are serious medicines and must be taken with care.
Be MedWise is a public education initiative by the NCPIE

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ACTIVITIES & Recreation

Goodwill Fitness Center is designed especially for people with physical disabilities or chronic illness and is a state-of-the-art 12,000 square foot facility located at 1601 E. St. Andrew Place in Santa Ana. Fully outfitted with the finest accessible fitness equipment and staffed by trained fitness professionals, the center is open five days a week.

YMCA - Y Inclusion Children with special needs succeed in group care settings with specialized inclusion and family support services provided by this program. Y Inclusion offers exceptional kids the priceless experience of interacting with and being accepted by their peers while providing parents with the peace of mind their children can become healthy and happy members of the community.

YMCA - New Horizons Adults with developmental disabilities typically go through life feeling isolated and alone. New Horizons provides supervised recreational outings that offer social interaction, skill building, and life-long friendships for these exceptional individuals. While participants are having fun, their full-time caregivers are provided with the “time-off” they need to better care for their loved ones.

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Products

– Health Management
EpDetect - Seizure Detection App

Seizure Tracker is an easy-to-use tool that allows patients to create personalized reports of logged seizure activity and medication history that can be easily shared with their medical team.

Track and Share - is a life management app where each of its screens represents a different domain of your life.

Bed Seizure Alarm - Bed motion monitors and alarms for detection of erratic movement such as Nocturnal Epileptic Seizures.

– Medical Identification
Miss Brooke's Company is the maker and founder of the original MediCharms medical id charms. MediCharms are offered in 31 unique one of a kind styles that are available in 14kt Yellow Gold, 14kt White Gold, Sterling Silver, and Gold Vermeil.

Lauren's Hope - provides a full line of personalized medical alert jewelry for those with any condition that requires you to wear a medical ID.

MedicAlert ensures that emergency responders and hospital staff get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care.

Road ID - If you are a runner, cyclist, triathlete or just an active person, Road ID is for you. In the event of an accident, if you can't speak for yourself, your Road ID will. It's not just a piece of gear - it's peace of mind.

– Protective Products
Guardian Helmets is a uniquely designed protective cap

The Safety Place Mat - Use it when you eat by placing your plate, utensils and drink directly on the placemat. Use it at school or the office by placing your work or computer keyboard directly on the Safety PlaceMat.
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Library

Challenges for Caring for Women with EpilepsyThis text presents difficult management issues surrounding women with epilepsy in a unique format. The Editors provide several controversial cases in adolescence, pre-conception, pregnancy and menopause with invited experts offering their differing opinions. The Editors compare the clinical approaches and build a consensus based on the best available evidence. Professionals charged with managing this challenging patient group will be given insights on providing the best possible care based on current available data and expert opinion.


INFORMATION DISCLAIMER: The content of Epilepsy Support Network or Orange County's (ESNOC) Resource Page is for information purposes only and does not constitute advice. Some ESNOC Web pages may provide links to other Internet sites for the convenience of users. ESNOC is not responsible for the availability or content of these external sites, nor does ESNOC endorse, warrant, or guarantee the products, services, or information described or offered at these other Internet sites. Users cannot assume that the external sites will abide by the same Privacy Policy to which ESNOC adheres. It is the responsibility of the user to examine the copyright and licensing restrictions of linked pages and to secure all necessary permissions.