Epilepsy Talk

Where to Go When You Need Help — Directory of Epilepsy Resources | November 21, 2013

Here are some wonderfully useful links I’ve found along the way. Some may be familiar and some may be new to you. If you have any additions or suggestions, please, speak out…

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.
  • Dravet Syndrome Foundation Dedicated to research for this rare, catastrophic form of epilepsy, beginning in childhoood.
  • 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 Epilepsy Prevention.
  • 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 provides 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. This  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 authorizes 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


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  1. How about, http://www.dravetfoundation.org/


    Comment by charlie — November 21, 2013 @ 7:44 PM

  2. Good idea. Thanks!


    Comment by Phylis Feiner Johnson — November 22, 2013 @ 9:27 AM

  3. Thank you Phyllis!

    I wish I could get my stuff together and be the mouthpiece advocate for epilepsy awareness that you are.

    You are a tireless warrior.

    Thank you

    Much Love



    Comment by Julie Salzbrunn — November 22, 2013 @ 9:31 AM

  4. It’s a labor of love, believe me.


    Comment by Phylis Feiner Johnson — November 22, 2013 @ 9:58 AM

  5. I simply cannot afford a seizure assistance dog nor an organization/agency that is available/willing to assist me in this endeavor!! Unable to work for the past few years and being afraid to use my stove or go outside for fear of the vertigo and or a seizure I’m a prisoner at home!!!!! Jedidiah


    Comment by Jedidiah Winterhawk — June 3, 2016 @ 12:32 PM

  6. This link may help. It provides all sorts of resources. (No one should be a prisoner at home!)

    Epilepsy — Top Financial and Medical Assistance Programs


    The big “find” for me was Josh Provides.org. But if they’re the real thing (and they certainly sound like it) then they’re the answer to all our dreams.


    Comment by Phylis Feiner Johnson — June 3, 2016 @ 1:59 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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