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Resources for Information in Dravet, Epilepsy, Seizures
Our Resource page is a continuous work in progress as we strive to provide information, assistance and support networks about Dravet syndrome, childhood epilepsy and seizures.
If you have a resource you would like to share, please contact info@IDEA-League.org. Please check back, as this list will continue to expand.
GENERAL INFORMATION ABOUT DRAVET SYNDROME
Dravet syndrome by Charolotte Dravet
www.ilae-epilepsy.org/ctf/dravet.html
Dravet Data
dravetdata.com/
Linking People to Dravet syndrome
Spectrum of SCN1A Mutation
www.ncbi.nlm.nih.gov
ANTIEPILEPTIC DRUGS
Medscape
emedicine.medscape.com
Needymeds
www.needymeds.org/
Find help with cost of medicine
Prescription Assistance Program
www.pparx.org/
www.charliefoundation.org
Website of The Charlie Foundation, a group dedicated to promoting the use of the ketogenic diet for children with epilepsy.
www.matthewsfriends.org
An informative and supportive website for those who wish to use the Ketogenic Diet as a treatment for childhood epilepsy. The aim of the website is to provide parents with an informed choice as well as promote the diet amongst health professionals so that it becomes more available.
www.stanford.edu/group/ketodiet/
Ketogenic diet web site created by the Pediatric Neurology Division at Stanford University School of Medicine. In-depth information for both parents and health care providers.
www-leland.stanford.edu/group/ketodiet/
La Dieta Cetogénica: Materiales de referencia para ustedes y su familia, el médico o el pediatra, en español (Centro de Epilepsia de Stanford).
CAMPS
Center for Courageous Kids
www.courageouskids.org/
The Center for Courageous Kids® is a world-class medical camp designed specifically for the child living with medical challenges who could not attend a traditional camp. The next weekend currently scheduled for families with Dravet syndrome is October 29-31, 2010.
Victory Junction Gang
www.victoryjunction.org/
Victory Junction proudly welcomed our first campers in June 2004. Since then, Victory Junction has been growing and expanding as a free-of-charge, year-round camp for children and their families. Located in North Carolina.
IEP AND EDUCATION
Wrightslaw
www.wrightslaw.com/
Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
Friedman Foundation
www.friedmanfoundation.org
Learn if you have a special needs school voucher in your state
About Autism Law
www.aboutautismlaw.com
One of the tools that you can use to assert your child's rights to a special education is to write your school requesting assessments and services, and to educate the school personnel as to your legal rights. The form letters provided in this chapter will make this task much easier for you. (This is not just for Autism, this can be used for all special needs situations)
National Dissemination Center for Children with Disabilities
www.nichcy.org/pubs/factshe/fs6txt.htm
National Dissemination Center for Children with Disabilities: Epilepsy information and resources.
Starfall
http://www.starfall.com/
Learn to read with phonics. GREAT educational site
SIBLING SUPPORT
Sibling Support
http://www.siblingsupport.org/ The Sibling Support Project is a national effort dedicated to the life long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns
ThinkQuest
http://library.thinkquest.org/J001619/
"Growing Up with Epilepsy" is a ThinkQuest website created by two young, gifted students with their teacher as their coach.
SPECIAL NEEDS SUPPORT
Epilepsy.com
www.epilepsy.com
SPECIAL NEEDS TRUST AND PLANNING
Make A Wish Foundation
www.wish.org
A network of nearly 25,000 volunteers enable the Make-A-Wish Foundation to serve children with life-threatening medical conditions. Volunteers serve as wish granters, fundraisers, special events assistants and in numerous other capacities.
TRAVEL ASSISTANCE
Angel Flight
www.Angelflight.com
We are a non-profit charitable organization of pilots, volunteers, and friends. We will arrange free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and health care organizations.
Ronald Mcdonald House
www.rmhc.org
Whether those problems involve how to stay near and support a hospitalized child, how to afford staying together in another city while a child is undergoing treatment, or even getting basic medical and dental care in an underserved community
SPECIAL NEEDS AND MEDICAL EQUIPMENT
EEG/Diagnostic Services
www.sleepmed.md
SLEEPMED/DigiTrace provides useful information for those interested in learning more about seizure disorders, epilepsy or unusual spells that can't be explained.
Medical alert systems
www.medscope.org
Medscope provides medical alert systems to seniors and handicapped individuals with an aim to promote independent living.
Play It Safe
www.mypoolpal.com/
The My Pool Pal flotation swimsuit, Aqua Force personal flotation device, and Swim-sters swim diapers and sun protective accessories provide the peace of mind every parent needs for a fun day outdoors.
Safety Mat
seizuresupport.com/
Safety Place Mat
Special Needs Stroller
www.adaptivemall.com
Maclaren and Tomato Strollers available
MEDICAL INFORMATION DEVICES
Medic Alert
www.medicalert.org
Supported by on-site medical professionals, MedicAlert will relay your vital medical information to emergency personnel.
www.laurenshope.com
Lauren's Hope is a place to purchase stylish medical-alert bracelets as well as medical-alert watches and pill boxes with built-in alarms.
www.oneida-medical-jewelry.com
A family-owned business that designs custom engraved medical ID bracelets and jewelry.
www.myvoiceid.org
MyVoice ID is a medical information device, which can record up to 80-words and is designed to be used to record a person's vital information.
www.911life.com
911life.com offers several Medical ID tags as well as custom medical ID cards that you can create online.
Medication reminders
www.watchminder.com
The WatchMinder is a vibrating alarm watch designed as a training and reminder system for children and adults with memory problems, attention deficit disorders, or learning disabilities. The watch offers a reminder mode and a pay attention/training mode, with both modes operational simultaneously. This wristwatch contains up to 16 daily reminder alarms and 70 pre-programmed messages.
Headgear
www.plument.com/
Plum Enterprises, Inc. produces fabric-covered foam protective headgear.
www.easylinkuk.co.uk/page4.html
Easylink manufactures several kinds of epilepsy alarms.
www.giantbiosensor.com/EpilepsyAlarms.html
Giant Biosensor manufactures alarms including epilepsy bed movement alarms.
Sleep Safe Pillow
www.sleep-safe.co.uk
Sleep-Safe specializes in anti-suffocation pillows.
Baby Banz
http://babybanz.com/
A complete line of sun protection items giving your child the UV protection they need
UNITED KINGDOM LINKS
Service Canada
www.servicecanada.gc.ca
A Registered Disability Savings Plan (RDSP) helps people with disabilities and their families save for the future.
www.epilepsy.ca
German Links
INFORMACION EN ESPANOL
Las diez preguntas más frequentes [sobre la epilepsia] — Fundación Epilepsia
www.epilepsyfoundation.org/contestacion/fpr.cfm
http://www.nichcy.org/spanish.htm
Publicaciones en Español de El Centro Nacional de Información para Niños y Jóvenes con Discapacidades (NICHCY)
www.noah-health.org/es/search/health.html
Temas de salud a NOAH (New York Online Access to Health)
www.ssa.gov/espanol/
Información en Español de La Administración del Seguro Social.
http://www-leland.stanford.edu/group/ketodiet/
La Dieta Cetogénica: Materiales de referencia para ustedes y su familia, el médico o el pediatra, en español (Centro de Epilepsia de Stanford).
INFORMATION IN OTHER LANGUAGES
Épilepsie Canada
http://www.epilepsy.ca/fran/mainSetFR.html
Épilepsie Canada (French)
www.ablelink.org
http://www.ablelink.org/public/french.htm
En Ligne Directe est un cyber-réseau d'amitié sûr et amical où les jeunes atteints de maladie ou de limitations communiquent avec d'autres jeunes comme eux. (French)
Associazione Italiana Contro l'Epilessia (Italian)
http://www2.comune.bologna.it/bologna/aice/aice.htm
Associazione Italiana Contro l'Epilessia (Italian)
Dansk Epilepsiforening (Danish)
http://www.epilepsiforeningen.dk/
Dansk Epilepsiforening (Danish)
Japanese Epilepsy Network
http://epn.hal.kagoshima-u.ac.jp/JASTS/jastsk.html
Japanese Epilepsy Network
Korean Epilepsy Support Group
http://my.dreamwiz.com/annachok/
Korean Epilepsy Support Group (Korean character set required)