epilepsy resource hub

Hi Sunshine,

I had my first seizure at 17, dropped out of Actuarial School at the University of Nairobi, and was later fired from a job because of my diagnosis. I have shared these experiences and more in my TED Talk and MOTH Talk, which have become resources for others navigating similar journeys, and have even been cited in: A Natural Language fMRI Dataset for Voxel-Wise Encoding Models – Scientific Data (2023), Mississippi Law Journal - Vol. 90(3) (2021), and resources by University of Washington, University of Illinois and Columbia University

Through My Mind My Funk Resource Hub, we have led online and offline epilepsy awareness campaigns, from Purple Day events to podcasts featuring African and Black men living with epilepsy. This page serves as a growing hub for epilepsy awareness, education, and lived experience resources. We will keep updating it as we connect with more individuals, researchers, and organizations working to end stigma and improve access to care.

Some resources, innovations and organizations in the epilepsy space that you should know about

  • Cameroon

    1. Epilepsy Awareness and Aid Foundation raises public awareness on epilepsy and provides assistance to people living with the condition

    Kenya

    1. Kiserem Foundation Assists with Medication and provides vocational training for people living with epilepsy in Kenya.

    2. Youth on the Move empowers the youth as well as their caregivers and trains community health volunteers in Kenya.

    3. Kenya Association for the Welfare of People with Epilepsy (KAWE) - improves the lives of individuals with epilepsy through advocacy, education, and support services.

    Sierra Leone

    1. Epilepsy Association of Sierra Leone (EASL) - medical assistance and training for individuals with epilepsy in Sierra Leone.

    South Africa

    1. Epilepsy South Africa provides specialized services to individuals with epilepsy, focusing on improving their quality of life.

    Zambia

    1. Seizure App by Bright Bwayla

    Regional Organizations

    1. Epilepsy Africa - network of associations in 22 African countries working to improve the quality of life for over 10 million people with epilepsy.

    2. International League Against Epilepsy – Africa (ILAE-Africa) - Focuses on promoting epilepsy awareness, improving access to care, conducting training, and fostering research across the African continent.

    3. International Bureau for Epilepsy (IBE) – Africa Chapters - Active chapters in 22 African countries, including Kenya, Nigeria, Uganda, and South Africa, working on advocacy and awareness initiatives.

  • Coming Soon

  • Coming soon

  • Coming soon

    1. Epilepsy Sparks

      Website Instagram Facebook

    2. Voice of Epilepsy

      Website Instagram Facebook

    3. Epilepsy Action

      Website Instagram Facebook

    1. Epilepsy Toronto is currently offering

      1. Purple Day Classroom Kits, with lesson plans, videos, posters, and downloadable resources that teachers everywhere can use to bring epilepsy awareness into their classrooms this March 24 to mark Purple Day on March 26.

      2. Workshops for people living with epilepsy both looking for work, as well as those with jobs facing challenges such as accommodations and disclosure. Through their Employment Services Department, they recently launched a new Job Seekers Program, which is a 4 week online program that repeats monthly with extensive support for job seekers with epilepsy.

        Website Instagram Facebook

    2. PAME

      Website Instagram Facebook

    3. Living well with Epilepsy

      Website Instagram Facebook

    4. Epilepsy Alliance America

      Epilepsy Foundation (USA)

      • Overview: Offers a variety of support groups for children, teens, adults, and parents impacted by epilepsy, including local and online groups.

      • Website: epilepsy.com/local

      2. Epilepsy Alliance America

      • Overview: A national organization providing support, care, and services to those with epilepsy, comprising member organizations across the U.S.

      • Website: epilepsyallianceamerica.org

      3. Empowering Epilepsy (USA)

      • Overview: Hosts support groups for various age groups, including kids, teens, adults, and seniors, offering a platform to meet others living with seizures.

      • Website: empoweringepilepsy.org/support-groups

      Website Instagram Facebook