fbpx

Episode #91 - Rare Epilepsy: Collaborating for Advocacy, Research, and Community featuring Yssa DeWoody

Seizing Life > Rare Epilepsy: Collaborating for Advocacy, Research, and Community
Share
Subscribe

This week on Seizing Life ®, Yssa DeWoody of Ring14 USA and the Rare Epilepsy Network (REN) joins us to provide a primer on rare epilepsies. Yssa explains what rare epilepsies are and how they are diagnosed, potential treatments, and the particular challenges for those impacted. Yssa also recommends resources including organizations, support groups, and clinical trials within the rare epilepsy community.

Yssa DeWoody is the Co-Founder and Research Director of Ring14 USA, an organization dedicated to providing a supportive community for families impacted by a rare epilepsy diagnosis and to help those diagnosed live their best life by finding targeted treatments and therapies. Like many in the rare epilepsy community, Yssa has a personal connection; her youngest daughter lives with Ring14 Syndrome. In 2011, Yssa co-founded Ring14 USA with four other mothers and has served as President/Director since 2013. Ring14 USA is a member of the Rare Epilepsy Network, a collaborative network of rare epilepsy groups with the shared goal of fostering patient-focused research and advocacy.

Download Audio

Want to download this episode? Fill out the form below and enjoy the podcast any time you’d like!

    Back to Episode Download PDF

    Rare Epilepsy: Collaborating for Advocacy, Research, and Community

    Related Episodes

    featured episode
    Living with Epilepsy
    January 25, 2023

    #108 Recent Advances in Diagnostic and Surgical Tools for Epilepsy

    Guest: Kristen Kotsimbos, Scott Strong, Gabriele Richardson, Ryan Chu

    This week on Seizing Life® we look at diagnostic and surgical tools that assist physicians in localizing and removing areas of the brain that produce seizures.

    featured episode
    FamilyLiving with Epilepsy
    January 11, 2023

    #107 Unleashing Your Inner Mama Bear

    Guest: Kate Neale Cooper

    Epilepsy advocate Kate Neale Cooper and host Kelly Cervantes share their experiences parenting children with epilepsy and offer advice on advocating for your child’s epilepsy care.

    featured episode
    Epilepsy and AdvocacyFamilyLiving with Epilepsy
    December 28, 2022

    #106 Kids Ask Docs the Darndest Things About Epilepsy

    Guest: Dr. Kristen Park and Dr. Adam Numis

    This week on Seizing Life® kids ask pediatric neurologists about epilepsy. Dr. Kristen Park of Children’s Hospital of Colorado and Dr. Adam Numis of the UCSF Benioff Children’s Hospital answer questions from kids on a wide variety of topics related to epilepsy.