The Alternating Hemiplegia of Childhood Foundation (AHCF) is proud to sponsor the scientific workshop titled “Achieving Consensus on Definitions and Outcomes for Natural History Studies and Clinical Trials in ATP1A3 Related Disorders.” Co-chaired by Dr Kathryn Swoboda and Dr Allison Brashear, the full day workshop will take place concurrent with the AHCF Family Meeting on June 27th in Minneapolis, MN.
The primary purpose of the workshop is to bring together key stakeholders from diverse backgrounds to better educate the community about the diversity and complexity of neurologic phenotypes associated with mutations in ATP1A3, and to identify and prioritize key milestones for success in moving towards targeted therapies for ATP1A3 disorders.
Key stakeholders include: patient family members, scientists, clinical investigators and physicians caring for such patients. A critical goal for this meeting includes working towards consensus on definitions and outcome measures that are both clinically meaningful to patients as well as practical to assess in the context of clinical studies and trials.
The workshop participants include:
Dr Aga Lewelt, MD, Physiatrist, Children’s Hospital Central California, Adjunct Assistant Professor, Pediatrics and Physical Medicine & Rehabilitation, University of Utah
Dr Fred Andermann O.C., M.D., F.R.C.P.(C) Professor of Neurology and Paediatrics, McGill University Director, Epilepsy Service Montreal Neurological Hospital & Institute
Dr Allison Brashear (Co-Chair), MD, MBA Professor & Chair, Department of Neurology, Wake Forest Baptist Health
Dr Suzanne DeBrosse MD, Clinical Geneticist, Center for Human Genetics, University Hospitals Case Medical Center
Dr Kevin Ess, MD, PhD Associate Professor Pediatrics, Director Division of Pediatric Neurology, Vanderbilt University
Dr Joshua Magleby, PhD Clinical Neuropsychologist, Integrative Neuropsychology Inc.
Dr Laurie Ozelius, PhD Associate Professor in the Departments of Genetics and Genomic Sciences and Neurology at the Mount Sinai School of Medicine and holds the Bachmann Strauss Chair in Movement Disorders.
Dr Sandra Reyna, MD Research Assistant Professor, Department of Neurology, Director Neurology Clinical Trials Office, Co-Director, Pediatric Motor Disorders Research Program University of Utah School of Medicine
Dr Hendrik Rosewich, MD Dept. of Pediatrics and Pediatric Neurology, Georg August University Faculty of Medicine
Dr Masayuki Sasaki, M.D., Department of Child Neurology, National Center of Neurology and Psychiatry,
Dr Ken Silver MD, MSc, F.R.C.P. Program Director, Child Neurology Training Program, Associate Professor Departments of Pediatrics and Neurology, University of Chicago
Dr Matthew Sweney, MD., M.S. University of Utah, Division of Pediatric Neurology, Assistant Professor of Pediatric Neurology with special emphasis on Epilepsy.
Dr Kathryn Swoboda (Co-Chair) MD, FACMG Associate Professor Neurology and Pediatrics, Director Pediatric Motor Disorders Research Program Department of Neurology, University of Utah
Dr Alfred George Jr., M.D. Magerstadt Professor and Chair, Department of Pharmacology, Northwestern University Feinberg School of Medicine
Tara Newcomb MS Licensed Certified Genetic Counselor, Clinical Research Coordinator, University of Utah
Dr Louis Viollet, MD, PhD Pediatric Neurology and Genetics, University of Utah School of Medicine
Gene Andrasco AHCF Vice President, Father of an AHC Child
Karen Venti, Mother of an AHC Child
Vicky Platt AHCF Secretary, Mother of an AHC Child
Dominique Poncelin President of French AHC Association (AFHA) Father of an AHC Child
Sharon Ciccodicola AHCF Medical Liaison
Lynn Egan AHCF President, Mother of an AHC Child