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DEE-P – Curing the Epilepsies: We need a bold new plan



This is a recording of the second webinar in this series—developed in conjunction with the the Epilepsy Leadership Council and the Rare Epilepsy Network—on Curing the Epilepsies, which was held on October 2, 2020.

This webinar gives a brief overview of the Curing the Epilepsies process, which is held every 7 years to reflect on what has been learned and to set the next Epilepsy Research Benchmarks. We then move into hearing more about the draft transformative ideas for the next round of benchmarks and why feedback from families is so critical (and how to provide it). We also hear an inspiring case study about the success of the pediatric oncology world who successfully collaborated to dramatically reduce pediatric cancer deaths.

This meeting is co-hosted by the Epilepsy Leadership Council, the Rare Epilepsy Network and DEE-P Connections.

The panelists were:

Vicky Whittemore, PhD – Program Manager at the National Institutes of Health in the office of Neurological Institute on Neurological Disorders and Stroke

Anne Berg, PhD – Research Professor of Pediatrics (Neurology and Epilepsy), Northwestern University Feinberg School of Medicine

Stewart Goldman, MD – Division Head, Hematology, Oncology, Neuro-Oncology & Stem Cell Transplantation; Meryl Suzanne Weiss Distinguished Professor in Hematology, Oncology and Stem Cell Transplantation

Ilene Penn Miller, JD serves as the volunteer director for the Rare Epilepsy Network (REN) and Advocacy Co-Chair on the 2020 NINDS Curing the Epilepsies Conference. Ilene also co-founded and is past President of Hope for Hypothalamic Hamartomas.

Moderator: JayEtta Hecker, Co-Founder and Executive Director of Wishes for Elliott and DEE-P Connections, who has a long and rich history in working to bring about significant change, will moderate this session.

DEE-P (Developmental Epileptic Encephalopathy-Project) Connections is a community for families who have children with Developmental and Epileptic Encephalopathies (DEEs). It was started to break the isolation so many of us feel and to facilitate connections. The project also shares critical resources with families facing similar challenges that are associated with the co-morbidities that impact our children and families.


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