Resource Page for Seizure Sufferers

When you or someone you love is suffering from seizures, it can put your mind at ease to know as much information as possible. The tricky thing is that you don’t know where to start.

We’ve put this guide together of all the best resources and information available for seizure sufferers and their families.

There is information for people who have been newly diagnosed, information for new parents and communities where you can find people who are going through the same thing that you are.

Through this guide we hope that you can learn that you are not alone. Others are going through the same thing. It is manageable.

Check out the links and the different resources’ aims and values.

Guide Number One

• Epilepsy.com 
  • The Epilepsy Foundation is a national non-profit with about 50 local organizations in America. It works to prevent, control, and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies. Definitely the guide number one to learn about Seizure and epilepsy.

Newly Diagnosed

• • Diagnosis 101 from epilepsy.com
  • https://www.youtube.com/watch?v=pZHKfXAWVvI
    • Your local Epilepsy Foundation
      • This is the easiest way to find help near you. Most local Epilepsy Foundations provide information and referral assistance; maintain individual and family support services; serve as advocates for the rights of those with epilepsy; and offer community-based education to employers, emergency first-responders, school nurses, and other allied health professionals. Just enter you zip code.
    • Dravet Syndrome Foundation & Rare Epilepsy Network
      • The Rare Epilepsy Network, or REN, is a collaboration between different organizations that represent patients with a rare syndromes or disorders associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research.
      • DSF research funds for Dravet syndrome and related epilepsies; increase awareness of these catastrophic conditions; and provide support to affected individuals and families.

    If you have an emergency, or need information ASAP:

  • Epilepsy & Seizures 24/7 Helpline Resources! 

    Research

    • Citizens united for Research in epilepsy (CURE)
      • CURE has raised over $50 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE awards grants for novel research projects to prevent epilepsy related to post-traumatic epilepsy, advancing the search for a cure, eliminating treatment side effects, and reversing deficits caused by frequent seizures.

    Parents, Family & Communities

    • Parents Helping Parents
      • PHP’s mission is to help children and adults with special needs receive the support and services they need to reach their full potential by providing information, training, and resources to build strong families and improve systems of care.
    • Epilepsy and My Child ToolKit & Epilepsy Matters: A guide for parents
      • Helpful guides specially for parents with a Newly Diagnosed Child. All you need to know if your children has had a seizure or suffers epilepsy. 
    • Epilepsy Warriors
      • Parents and Caregivers of Children, Teens, Young Adults and Adults who suffer from Seizures, have been diagnosed with Epilepsy, Dravets Syndrome, LGS so that we can spread awareness and TALK ABOUT EPILEPSY and bring an end to this horrible infliction.
    • Federation For Children With Special Needs
      • Provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. “Informing, educating, empowering families”.
    • Center for parent Information and Resources
      • Private workspace for Parent Centers to exchange resources, discuss high-priority.
    • American Epilepsy Society
      • The American Epilepsy Society is one of the oldest neurological professional organizations in the country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy. ‘Working toward a world without epilepsy”.
    • Epilepsy Advocate
      • EpilepsyAdvocate is a community of people living with epilepsy, their family members, and their caregivers.
    • Empowering Epilepsy
      • Organization promoting the empowerment of people with epilepsy and their families.

    Brain Health

  • https://youtu.be/1NQwXdd3_pY
    • Traumatic Brain Injury (TBI)
      • Leading Internet resource for education, advocacy, research and support for brain injury survivors, their families, and medical and rehabilitation professionals.
    • Lundbeck
      • Lundbeck is dedicated to raising awareness and research into psychiatric and neurological disorders. “No One Knows the Brain Better”.
    • Neurology Now
      • Neurology Now, an official publication of the American Academy of Neurology (AAN), provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment.
    • United Cerebral Palsy Associations
      • UCP educates and provides support services to ensure a life with no limits for people disabilities. They work with over 176,000 people with a broad range of disabilities every day to ensure their productivity and full citizenship.
    • Cerebral Palsy Guide – the Cerebral Palsy Guide has compiled the most in-depth resources nationwide to help guide and assist families with disabilities caused by physical birth injuries.

    Professional Organizations & Clinical Resources

    • • American Academy of Neurology
      • American Association of Neurological Surgeons (AANS)
      • American Association of Neuroscience Nurses (AANN)
      • American Clinical Neurophysiology Society (ACNS)
      • American Neurological Association (ANA)
      • Center for Disease Control and Prevention (CDC)
      • Child Neurology Society
      • Health Resources & Services Administration (HRSA)
      • International League Against Epilepsy (ILAE)
      • Society for Neuroscience (SFN)

    Veterans

    • Military Health System 
      • There isn’t another military medical force like it in the world—with the expertise, the assets and the global reach of our health system.
    • Center of Disease Control and Prevention: Epilepsy in veterans
      • Veterans are at higher risk of developing epilepsy.
    • Veterans Health Administration: Epilepsy 

    Legal

    • Jeanne A. Carpenter Epilepsy Legal Defense 
      • Getting legal help to end epilepsy-related discrimination and injustice through education and increased access to legal services for individuals with epilepsy — through a system of managed referrals and legal support to a nationwide network of attorneys committed to this cause.
    • Americans with Disabilities Act
      • “The Americans with Disabilities Act prohibits discrimination and ensures equal opportunity for persons with disabilities in employment”.

    If you come across anything that has helped you that is not listed here, drop us an email on [email protected] and don’t forget to follow on Twitter and Facebook.

Guardian Helmets is not responsible for the content provided on the websites linked before.