The 2nd Annual Upper Midwest Rare Epilepsies Conference will take place virtually on Saturday, May 7, 9, and 11, and will feature presentations from leading medical professionals, family caregivers, and epilepsy researchers as they present on topics including new therapies, research, wellness, and planning for the future.
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.
Conference Details
DATE
Saturday, May 7, 2022
Monday, May 9, 2022
Wednesday, May 11, 2022
PLATFORM
Zoom Webinar
WHO
Individuals and caregivers impacted by a rare epilepsy diagnosis
Conference Agenda
Saturday, May 7, 2022 Event Opens
Opening Remarks
Angie May, Board Chairperson, Epilepsy Foundation of Michigan
Rare Epilepsies: Getting the Best Care for Everyone
Jacqueline French, MD, Chief Medical and Innovation Ocer, Epilepsy Foundation; Epileptologist, NYU Langone Health
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Managing Neuropsychiatric and Cognitive Comorbidities in Epilepsy
Nicole Williams Doonan, MD, Pediatric Neurologist, Gillette Children’s Specialty Healthcare
Erica Sieg, PsyD, Neuropsychologist, Northwestern Medicine
Kristy Kargel, Parent of Child with a Rare Epilepsy
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Break
Q&A with the Rare Epilepsy Network
Karen Utley, President and Co-founder, International Foundation for CDKL5 Research; Coordinating Committee Member, Rare Epilepsy Network; Director of Patient Advocacy, Texas Rare Alliance
Moderated by
Ayesha Akhtar, MPH, Director of Education, Epilepsy Foundation of Greater Chicago
Pipeline Research: New Therapies and Medications
Peter Warnke, MD, Neurosurgeon and Researcher, University of Chicago Medicine
Moderated by
Brandy Fureman, PhD, Chief Outcomes Officer, Epilepsy Foundation
Closing Remarks
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Event Opens
Opening Remarks
Angie May, Board Chairperson, Epilepsy Foundation of Michigan
Rare Epilepsies: Getting the Best Care for Everyone
Jacqueline French, MD, Chief Medical and Innovation Ocer, Epilepsy Foundation; Epileptologist, NYU Langone Health
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Managing Neuropsychiatric and Cognitive Comorbidities in Epilepsy
Nicole Williams Doonan, MD, Pediatric Neurologist, Gillette Children’s Specialty Healthcare
Erica Sieg, PsyD, Neuropsychologist, Northwestern Medicine
Kristy Kargel, Parent of Child with a Rare Epilepsy
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Break
Q&A with the Rare Epilepsy Network
Karen Utley, President and Co-founder, International Foundation for CDKL5 Research; Coordinating Committee Member, Rare Epilepsy Network; Director of Patient Advocacy, Texas Rare Alliance
Moderated by
Ayesha Akhtar, MPH, Director of Education, Epilepsy Foundation of Greater Chicago
Pipeline Research: New Therapies and Medications
Peter Warnke, MD, Neurosurgeon and Researcher, University of Chicago Medicine
Moderated by
Brandy Fureman, PhD, Chief Outcomes Officer, Epilepsy Foundation
Closing Remarks
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Monday, May 9, 2022 Optimizing Your Telemedicine Visit
Nancy McNamara MD, Pediatric Epileptologist, Assistant Clinical Professor, Codirector of Epilepsy Surgery Program, C.S. Mott Children’s Hospital University of Michigan Health
Moderated by
Renee Roederer, Community Care Director, Epilepsy Foundation of Michigan
Rescue Medications and Seizure Action Plans
Priyamvada Tatachar, MD, Pediatric Epileptologist, Ann & Robert H. Lurie Children’s Hospital of Chicago Assistant Professor Northwestern University School of Medicine
Moderated by
Ayesha Akhtar, MPH, Director of Education, Epilepsy Foundation of Greater Chicago
Optimizing Your Telemedicine Visit
Nancy McNamara MD, Pediatric Epileptologist, Assistant Clinical Professor, Codirector of Epilepsy Surgery Program, C.S. Mott Children’s Hospital University of Michigan Health
Moderated by
Renee Roederer, Community Care Director, Epilepsy Foundation of Michigan
Rescue Medications and Seizure Action Plans
Priyamvada Tatachar, MD, Pediatric Epileptologist, Ann & Robert H. Lurie Children’s Hospital of Chicago Assistant Professor Northwestern University School of Medicine
Moderated by
Ayesha Akhtar, MPH, Director of Education, Epilepsy Foundation of Greater Chicago
Wednesday, May 11, 2022 Understanding Seizure Detection Devices
Tom Stanton, President of Danny Did Foundation
Moderated by
Kristin Dostal, Executive Director, Epilepsy Foundation of Wisconsin
Genetics and Rare Epilepsies
Douglas Smith, MD, Pediatric Epileptologist, Minnesota Epilepsy Group
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Understanding Seizure Detection Devices
Tom Stanton, President of Danny Did Foundation
Moderated by
Kristin Dostal, Executive Director, Epilepsy Foundation of Wisconsin
Genetics and Rare Epilepsies
Douglas Smith, MD, Pediatric Epileptologist, Minnesota Epilepsy Group
Moderated by
Glen Lloyd, Executive Director, Epilepsy Foundation of Minnesota
Connect with your local Epilepsy Foundation Office:
Epilepsy Foundation of Greater Chicago
epilepsychicago.org | 800-273-6027
Epilepsy Foundation of Michigan
epilepsymichigan.org | 800-377-6226
Epilepsy Foundation of Minnesota
epilepsyfoundationmn.org | 800-779-0777
Epilepsy Foundation of Wisconsin
epilepsywisconsin.org | 608-665-1848