Resources

Financial information, grants, advocacy organizations, caregiver tools, and much more.

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Getting the Financial Information You Need

Your hub for information about:

  • Federal programs such as Social Security Disability (SSDI) and Supplemental Security Income (SSI)
  • State programs (including waivers)
  • Grants (for items like seizure monitors, specialized chairs, travel, and much more)
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Connecting With
the Community

A place to access multiple advocacy foundation and charity groups, or connect and share with others living with rare epilepsy on our Facebook page.

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Living With
Rare Epilepsy

Ways to help improve day-to-day life, including caregiver tools, ideas for family fun, emotional support resources, and information about genetic testing and counseling.

Stories & Advice

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Articles and videos that provide both information and inspiration, covering a broad range of topics on many of the issues you face.

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Learn About Rare Epilepsies

A source of information for several rare and severe epilepsies and their associated risks.

Dravet Syndrome (DS)

A rare, treatment-resistant, severe type of epilepsy with frequent and/or prolonged seizures. It typically begins within the first year of life.1,2

Lennox-Gastaut Syndrome (LGS)

A rare, severe form of epilepsy with multiple kinds of seizures, including tonic (stiffening) and atonic (loss of muscle tone). Most LGS seizures are tonic and occur while sleeping.3-7

Tuberous Sclerosis Complex (TSC)

A genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidneys, skin, and lungs. It also causes seizures of many types to occur.8

Infantile Spasms (IS)

A rare epilepsy-related seizure disorder seen in early infancy. The average age of onset is under the age of 1, and about one-fourth of infants with this disorder will stop having seizures within 1 year of their first seizure.9-13

Sudden Unexpected Death in Epilepsy (SUDEP)

The most common epilepsy-related cause of death, SUDEP affects 1 out of every 1000 with epilepsy each year. Deaths due to SUDEP are unexpected and occur in individuals with epilepsy who are otherwise healthy.14-15

References:
  1. Dravet C. The core Dravet syndrome phenotype. Epilepsia. 2011;52(suppl 2):3-9.
  2. van Dam VS, Korff CM. Dravet syndrome: an update. Swiss Arch Neurol Psychiatr. 2013;164(5):153-157.
  3. Arzimanoglou A, French J, Blume WT, et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. Lancet Neurol. 2009;8(1):82-93.
  4. Chevrie JJ, Aicardi J. Childhood epileptic encephalopathy with slow spike-wave: a statistical study of 80 cases. Epilepsia. 1972;13(2):259-271.
  5. Bourgeois BFD, Douglass LM, Sankar R. Lennox-Gastaut syndrome: a consensus approach to differential diagnosis. Epilepsia. 2014;55(suppl 4):4-9.
  6. Arzimanoglou A, Resnick T. All children who experience epileptic falls do not necessarily have Lennox-Gastaut syndrome…but many do. Epileptic Disord. 2011;13(suppl 1):S3-S13.
  7. Panayiotopoulos CP. Epileptic encephalopathies in infancy and early childhood in which the epileptiform abnormalities may contribute to progressive dysfunction. In: The Epilepsies: Seizures, Syndromes and Management. Oxfordshire, UK: Bladon Medical Publishing; 2005:137-206.
  8. Northrup H, Krueger DA; International Tuberous Sclerosis Complex Consensus Group. Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference. Pediatr Neurol. 2013;49(4):243-254.
  9. Go CY, Mackay MT, Weiss SK, et al; Child Neurology Society; American Academy of Neurology. Evidence-based guideline update: medical treatment of infantile spasms. Report of the Guideline Development Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology. 2012;78(24):1974-1980.
  10. Hrachovy RA, Frost JD Jr. Infantile spasms. Handb Clin Neurol. 2013;111:611-618.
  11. Pellock JM, Hrachovy R, Shinnar S, et al. Infantile spasms: a U.S. consensus report. Epilepsia. 2010;51(10):2175-2189.
  12. Hattori H. Spontaneous remission of spasms in West syndrome: implications of viral infection. Brain Dev. 2001;23(7):705-707.
  13. Hrachovy RA, Glaze DG, Frost JD Jr. A retrospective study of spontaneous remission and long-term outcome in patients with infantile spasms. Epilepsia. 1991;32(2):212-214.
  14. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-1031.
  15. Harden C, Tomson T, Gloss D, et al. Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors: report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology. 2017;88(17):1674-1680.

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