Standing Committee

The SC ensures that the Mission and the Vision are implemented.
A "light structure" that can be a permanent solution or regarded as transition towards the establishment of a legal body.
The SC is elected at the annual meeting.
A maximum 5 members: 2 seats for representatives of non-profit organizations and 3 seats for academic researchers.
Geographical representation: at least one member of Europe, the USA and Asia-Oceania.
The first SC was elected at the 5th Symposium London, August 2015.
Members are listed below.


Kevin C. Ess

Dr. Ess graduated from the University of Cincinnati with a B.M. in Music Performance (1989). He then earned a PhD in Developmental Biology (1996) and a M.D. degree (1998) from the University of Cincinnati. After an internship in Pediatrics at Denver Children's Hospital, then did a Child Neurology residency at Washington University, St. Louis Children's Hospital. Dr. Ess then completed fellowship training in Pediatric Neurophysiology at Washington University, St. Louis Children's Hospital as well as post-doctoral research in Dr. David Gutmann's laboratory. He was an Instructor of Neurology and Pediatrics at Washington University in St. Louis from 2004-2006.
Dr. Ess joined the faculty at Vanderbilt University Medical Center in 2006 and is currently Associate Professor in the Departments of Pediatrics and Neurology. He is the Division Director of Pediatric neurology and Neurologist-in-Chief of Monroe Carrell Children's Hospital at Vanderbilt where he holds the Gerald M. Fenichel Chair in Neurology. He is also a member of the Vanderbilt Kennedy Center for Research on Human Development. His research interests are on mechanisms of normal cortical development and how genetic aberrations result in brain malformations, epilepsy, and autism. His clinical activities focus on the management of intractable epilepsy in children. This includes medical therapies as well as diet and surgical management. He has a special interest in the diagnosis, treatment, and the basic science of the genetic disorders Tuberous Sclerosis Complex and Alternating Hemiplegia of Childhood.
Contact Information: Kevin C. Ess M.D., Ph.D., Associate Professor of Pediatrics and Neurology, Chief, Pediatric Neurology, Vanderbilt University Medical Center, Nashville, TN USA 37232, Phone: 615-936-5536, kevin.ess@vanderbilt.edu.
Karin Lykke-Hartmann

Karin Lykke-Hartmann, associate professor in Biomedine. Educated as a molecular scientist. Main interest is working on Atp1a3 mouse model, with particular interest in drug screening, neurotransmitter signaling, and cellular mechanisms for Atp1a3-related pathologies (e.g Holm et al, Scientific Reports, 2016).
Contact info: Department of Biomedicine and Department of Clinical Medicine, Aarhus University, email: kly@biomed.au.dk.
http://biomed.au.dk/forskning/forskere-og-forskningslaboratorier/l-m/lykke-hartmann-karin/
Mohamad Mikati

Mohamad A. Mikati M.D., is the Wilburt C. Davison Professor of Pediatrics, Professor of Neurobiology, and Chief of the Division of Pediatric Neurology. Dr. Mikati’s clinical research has centered on characterization genetics and therapy of pediatric epilepsy and Alternating Hemiplegia of Childhood. In the laboratory he has elucidated mechanisms of seizure related neuronal injury, particularly those related to the ceramide pathway, demonstrated neuroprotective effects of several agents including erythropoietin and most recently he has concentrated his laboratory research on the pathophysiology of ATP1A3 dysfunction in animal models of Alternating Hemiplegia of Childhood with the eventual goal of hopefully identifying novel therapies for that disorder. Email: mohamad.mikati@duke.edu.
Hendrik Rosewich

Dr. Rosewich, MD is an assistant Professor, pediatric neurologoist and senior physician in the Department of Pediatrics and Adolescent Medicine, Division of Pediatric Neurology at the University Medical Center Goettingen at Georg August University in Goettingen, Germany. From the very beginning his clinical and basic research interests focused on the etiology and pathogenesis of rare neurometabolic diseases including peroxisomal disorders like Zellweger-Syndrome and X-linked Adrenoleukodytrophy as well as rare Movement Disorders like Alternating hemiplegia of childhood. Besides primary care for affected children with these disorders he is especially interested in the investigation of the pathogenesis of Alternating hemiplegia of childhood and X-linked Adrenoleukodystrophy to answer essential questions for the development of therapeutic options.
Contact info: Hendrik Rosewich, MD, Assistant Professor, Department of Pediatrics and Adolescent Medicine, Division of Pediatric Neurology, University Medical Center Goettingen, Georg August University, Faculty of Medicine, Office Postal Address: Robert-Koch-Strasse 40, D-37075 Goettingen, Germany, Phone:+49 551-39 6210 Fax: +49 551-39 6252, hendrik.rosewich@med.uni-goettingen.de
Tsveta Schyns

Tsveta Schyns-Liharska co-organised the First Symposium ATP1A3 in disease in 2012 and took active part in the Organising Committees of the follow-up Symposia. She has both, professional and personal, long standing interest in researching Alternating Hemiplegia (AH) in Childhood: founded the European Network for Research on AH (www.enrah.net) in 2003 and received competitive European funding and conducted the ENRAH for SMEs and nEUroped projects from 2005 till 2011. Tsveta is molecular geneticist, based in Brussels, Belgium and currently works as expert in evaluating scientific projects at the European Commission and at the European Medicines Agency's Paediatric Committee in London, UK. Email: ts@enrah.net.
Jeff Wuchich

Mr. Wuchich is a graduate of the University of Chicago AB Psychology 1991. He is currently pursuing the M.Div. & MA Pastoral Counseling degrees from Asbury Theological Seminary. Jeff is the Co-Founder and President of Cure AHC http://www.cureahc.org, a global patient advocacy organization for alternating hemiplegia of childhood. He is the father of 9-year-old AHC Champion Matthew (NC, USA).
Mr. Wuchich is also a successful software salesman and business owner. Jeff has led many successful fundraising campaigns for AHC research, played an integral role in the pilot study at Duke University that revealed that ATP1A3 mutations cause AHC, and was the chief organizer of the 4th Symposium on ATP1A3 in Disease August, 2015 in Washington, DC. He has given many interviews about alternating hemiplegia of childhood to raise awareness, and has met with numerous government officials to advocate for increase research funding for rare disease. Mr. Wuchich also served from 2012-2016 as Co-Chair of the Patient Access Committee of Global Genes, a global rare disease advocacy organization, wherein he led the committee to create a number of successful toolkits and webinars aimed at helping rare disease patients gain better access to care.
Contact Information: Jeff Wuchich, Co-Founder & President, Cure AH www.cureahc.org jeff@cureahc.org, phone: 919.488.4217, cell: 919.412.1870, 8480 Honeycutt Rd., Suite 200 Raleigh, NC 27615.