Epilepsy Talk

American Epilepsy Outreach Foundation | Links | November 14, 2009

I just received an email from the American Epilepsy Outreach Foundation  http://epilepsyoutreach.org/9#two with all kinds of wonderfully useful links.  So, I thought I’d share them with  you.  Some may be famaliar, and some quite new:

Epilepsy Resources

  • C.U.R.E Citizens United for Research in Epilepsy
  • Epilepsy and Water Safety Epilepsy and water don’t mix!
  • Epilepsy Foundation Find your local Epilepsy Foundation chapter.
  • Lennox-Gastaut Syndrome Foundation An organization dedicated to raising awareness of Lennox-Gastaut Syndrome.
  • Seizure Tracker Log and track seizure activity, appointments, and medication schedules through a simple calendar interface.
  • Vagus Nerve Stimulation VNS Therapy is a non-drug treatment option that offers a unique safety profile and mechanism of action.
  • www.epilepsy.com epilepsy.com is dedicated to providing the most comprehensive source of information, tools and community available online for patients, their families, healthcare professionals and the research community, and is a program of the Epilepsy Therapy Project.
  • You Are Not Alone: Toolkit for Parents of Teens with Epilepsy – Department of Health and Human Services, Centers for Disease Control and Prevention, Epilepsy
  • National Association of Epilepsy Centers Find specialized medical and surgical care for Epilepsy
  • MyKetoCal – KetoCal 4:1 and KetoCal 3:1 are the only nutritionally complete ketogenic formulas designed with the caregiver in mind when administering the ketogenic diet
  • Doose Syndrome (MAE) A website created by a parent of a child with Doose Syndrome. Learn ways to protect your child and find the best treatment available.
  • Wisconsin Seizure Control Network  The Wisconsin Seizure Control Network network is a group of agencies, families, and individuals working together to make Wisconsin the best place in the world for children with seizures, and for those who care for them.
  • The Tyler Foundation provide financial support (non-medical expenses) to families’ of children with epilepsy that are being treated at Boston Children’s Hospital and UMASS Medical Center

 Financial Assistance

  • All Kids Covered Illinois’ Program to Provide health care to All Kids.
  • SCHIP State Children’s Health Insurance Program.
  • Social Security Benefits for children with disabilities.
  • Tax Strategies for Parents of Kids with Special Needs
  • Medicaid makes it possible for certain low-income individuals and families to get health care when they could otherwise not afford it. It is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid sends payments directly to health care providers.
  • Medicaid waivers are available for certain individuals who do not meet the income limits that Medicaid requires. It may cover the expenses that primary health insurance does not. The following page contains information on the different Medicaid waiver programs available in each state.
  • The No Child Left Behind Act (NCLB) is a federal law that reauthorized several federal programs in order to improve the performance of primary and secondary schools in the United States. The law is guided by four principles: accountability, flexibility and local control, parental choice, and what works.

Medication Assistance Programs



  1. March 26 has been designated as the international day for showing solidarity for people who have epilepsy.

    Since the international color of epilepsy is purple, March 26 is being called purple day.

    For more information go to http://www.purpleay.org


    Comment by ben — November 15, 2009 @ 2:55 AM

  2. Awesome resources list!


    Comment by staceinspace — February 7, 2011 @ 5:08 PM

    • I thought it would be great for your new website. Take whatever you want from it..or take ALL of it. It’s information that’s meant to be shared!


      Comment by Phylis Feiner Johnson — February 7, 2011 @ 11:10 PM

  3. So much information thankful for your help


    Comment by judyjudy01985 — July 18, 2015 @ 6:43 PM

  4. Thank YOU Judy. I’m here to help…


    Comment by Phylis Feiner Johnson — July 18, 2015 @ 9:15 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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