Upper Midwest Rare Epilepsy Conferences

For links to REN’s member organizations and websites click on this link: https://www.rareepilepsynetwork.org/members-partners Members featured in video in order of appearance: Batten Disease Support and Research Association Angelman Syndrome Foundation American Epilepsy Society CACNA1A Foundation The Brain Recovery Project: Childhood Epilepsy Cure Epilepsy Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA) Tuberous Sclerosis Complex Alliance (TSC) The Cute Syndrome Foundation Ring 14 USA NORSE Institute Epilepsy Foundation NR2F1 Foundation International SCN8A Alliance Developmental & Epileptic Encephalopathies (DEE-P Connections) STXBP1 Foundation Koolen-de Vries Syndrome Foundation Hope for Hypothalamic Hamartomas TESS Research Foundation (SLC13A5) International Foundation for CDKL5 Research (IFCR) CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D) Nonsense Mutation Foundation CureShank FamilieSCN2A Foundation Rasopathies Network Phelan-McDermid Syndrome Foundation (PMSF) Dup15q Alliance Hope for HIE Grin2b Foundation Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet) SMC1A Foundation Fundacion Libellas (Gene NALCN and UNC80) CHAMP1 Research Foundation Coalition to Cure CHD2 Hope for ULD Glut1 Deficiency Foundation WWOX Foundation CFC International Cardio-Facio-Cutaneous Syndrome LGS Foundation KIF1A Schinzel-Giedion Syndrome Foundation Lightning & Love Foundation The Bow Foundation (GNAO1) PVNH Support & Awareness KCNQ2 Cure Alliance Genetic Epilepsy Team Australia TBC1D24 Foundation Epilepsy Learning Healthcare System (ELHS) Chelsea’s Hope Lafora Children Research Fund SCN2A Asia Pacific COMBINED Brain

Day 2 - Speaker 3: Open Forum with Takijah Heard, MD (Pediatric Epileptologist), Tyson Burghardt, MD (Epileptologist), Amanda Moore (CEO of the Angelman Syndrome Foundation and Parent).

Day 2 - Speaker 2: Planning for the Future with Nadia Van (Disability Attorney and Former Special Education Teacher) and John Milichap, MD (Pediatric Epileptologist)

Day 2 - Speaker 1: Supporting Physical, Mental, and Cognitive Health in Epilepsy Care with Jana Jones, PhD (Neuropsychologist), Sucheta Joshi, MD, MS (Pediatric Epileptologist), Yssa DeWoody, PhD (President of Ring14 USA and Parent).

Day 1 - Speaker 3: The Pipeline: New and Emerging Therapies for Rare Epilepsies with Jacqueline French, MD Chief Medical and Innovation Officer at the Epilepsy Foundation - Epileptologist NYU Langone Health

Day 1 - Speaker 2: No Stone Unturned: What to Try When Nothing Has Worked with David Burdette, MD (Epileptologist), Peter Warnke, MD (Neurosurgeon and Researcher, and Kim Kelsey (Parent).

Day 1 - Speaker 1: From Labs to Lives: How Epilepsy Research is Improving and Saving Lives with Tracy Dixon-Salazar, PhD Neuroscientist - Executive Director at LGS Foundation - Parent