Standing Committee (SC)
The SC ensures that the Mission and the Vision are implemented. The current members of the SC were elected by the ATP1A3disease General Assembly at the London 2016 Symposium. The SC operates permanently to ensure meetings are continuously held at the highest scientific quality. Main tasks include:
- select the Organisers of each annual meeting;
- review and advising the Organisers(committee) on the meeting program, budget and organisation, according to the developed Guidelines.
- ensure that dedicated funds are gathered and passed from one annual host to the next;
- maintain and update a dedicated web site;
- collect, store and publish information on the meetings;
- communicate the outcomes of the meeting and promote and advertise the meeting and the cause of ATP1A3-related diseases community.
KEVIN C. ESS is temporarily non-acting member of the SC during his commitment to the Organising Committee of the 7th Symposium , Chicago, 2018.
The SC ensures that the Mission and the Vision are implemented. The current members of the SC were elected by the ATP1A3disease General Assembly at the London 2016 Symposium. The SC operates permanently to ensure meetings are continuously held at the highest scientific quality. Main tasks include:
- select the Organisers of each annual meeting;
- review and advising the Organisers(committee) on the meeting program, budget and organisation, according to the developed Guidelines.
- ensure that dedicated funds are gathered and passed from one annual host to the next;
- maintain and update a dedicated web site;
- collect, store and publish information on the meetings;
- communicate the outcomes of the meeting and promote and advertise the meeting and the cause of ATP1A3-related diseases community.
KEVIN C. ESS is temporarily non-acting member of the SC during his commitment to the Organising Committee of the 7th Symposium , Chicago, 2018.
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.
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/
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.
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
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.
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.
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.