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.

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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.

Sleep

The Science of Sleep

Sleep disruption is not simply an annoyance; it is a serious complication that should b…

Rama Maganti, MD

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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

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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

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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

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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

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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

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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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