With 3.4 million people diagnosed with epilepsy in the US and 1 in 26 people developing the disorder in their lifetime, an increasing number of people are being diagnosed with a form of rare epilepsy. Though advances in research and genetics are resulting in an increased understanding of many of these syndromes, there is still much to learn. Rare epilepsies such as the Lennox-Gastaut Syndrome, Doose Syndrome, and others can greatly alter a person’s life and the more we can understand them, the better equipped we are to fight the challenges they can present.

Join the Epilepsy Foundations of Minnesota, Wisconsin, Michigan, and Greater Chicago for the Virtual Rare Epilepsies Conference on May 7th – 8th, 2021. Hear from leading doctors from across the upper midwest as they present on topics including research, therapies, and approaches to living with a rare epilepsy, and support and planning for the future.

Conference Details


May 7 and 8, 2021




Zoom Webinar


Individuals and caregivers impacted by a rare epilepsy diagnosis

Rare Epilepsies Conference Agenda

(Additional panelists will join us to share their personal perspectives.)


From Labs to Lives: How Epilepsy Research is Improving and Saving Lives

A parent’s journey to becoming a neuroscientist; and a review of how basic research on the cellular and molecular mechanisms of epilepsy reduces mortality and promotes improved quality of life.


  • Tracy Dixon-Salazar, PhD – Neuroscientist; Executive Director – LGS Foundation; Parent
No Stone Unturned: What to Try When Nothing Has Worked

An exploration of complementary and experimental therapies, novel applications of existing therapies, and other approaches to managing drug-resistant epilepsy.


  • David Burdette, MD – Epileptologist, Spectrum Health (Grand Rapids, MI)
  • Peter Warnke, MD – Neurosurgeon and Researcher; University of Chicago Medicine
  • Kim Kelsey, Parent
The Pipeline: New and Emerging Therapies for Rare Epilepsies

A review of recently approved therapies for rare epilepsies and those in the pipeline.


  • Jacqueline French, MD – Chief Medical and Innovation Officer, Epilepsy Foundation; Epileptologist, NYU Langone Health


Supporting Physical, Mental, and Cognitive Health in Epilepsy Care

A discussion on the importance of integrating physical, emotional, and cognitive wellbeing into epilepsy care decisions.


  • Jana Jones, PhD – Neuropsychologist, University of Wisconsin, Madison
  • Sucheta Joshi, MD, MS – Pediatric Epileptologist, Michigan Medicine C.S. Mott Children’s Hospital
  • Yssa DeWoody, PhD – Ring14 USA President & Cofounder; Parent
Planning for the Future

Guidance on the many decisions that need to be made across the lifespan to support self-determination and meet the care needs of those with rare epilepsies.


  • Nadia Vann – Disability Attorney and Former Special Education Teacher; Buhl, Little, Lynwood & Harris, PLC
  • John Millichap, MD – Pediatric Epileptologist, Ann & Robert H. Lurie Children’s Hospital of Chicago
Rare Epilepsies Open Forum

A chance to ask questions about important issues that haven’t yet been addressed, and an opportunity to share ideas and resources.


  • Takijah Heard, MD – Pediatric Epileptologist, NorthShore University HealthSystem (Chicago, IL)
  • Tyson Burghardt, MD – Epileptologist, Michigan State University
  • Amanda Moore – Angelman Syndrome Foundation CEO; Parent

For any questions regarding registration or about the conference, please call the Epilepsy Foundation of Michigan at 800.377.6226.