Standing Committee (SC)
The Standing Committee's 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.
Alfred L. George, Jr.
Dr. George is the Alfred Newton Richards Professor and Chair of the Department of Pharmacology, and Director of the Center for Pharmacogenomics at the Northwestern University Feinberg School of Medicine. He has more than 30 years of experience investigating the structure, function, molecular genetics and pharmacology of human ion channels and transporters. As an internationally regarded leader in the field of channelopathies, Dr. George’s research represents a unique blend of human molecular genetics, ion channel biology and pharmacology.
Work in his laboratory strives to elucidate the molecular and cellular mechanisms responsible for alternating hemiplegia of childhood (AHC) and related developmental neurological disorders caused by mutations in ATP1A3. Dr. George has also been closely aligned with parent-led AHC Foundations as well as the international AHC community. He hosted the 2018 international ATP1A3 in Disease symposium held in Chicago.
Contact information: Alfred L. George, Jr., M.D., Professor and Chair, Department of Pharmacology, Northwestern University Feinberg School of Medicine, Chicago, IL USA 60611, Phone: 312-503-4892, al.george@northwestern.edu
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.
Hendrik Rosewich
Dr. Rosewich, MD is an associate Professor, pediatric neurologist, senior physician and Assistant Medical Director in the Department of Pediatrics and Adolescent Medicine, Division of Pediatric Neurology at the University Medical Center Göttingen at Georg August University in Göttingen, 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, Associate Professor and Assistant Medical Director, Department of Pediatrics and Adolescent Medicine, Division of Pediatric Neurology, University Medical Center Göttingen, Georg August University, Faculty of Medicine, Office Postal Address: Robert-Koch-Strasse 40, D-37075 Göttingen, Germany, Phone:+49 551-39 67019 Fax: +49 551-39 13068899,
hendrik.rosewich@med.uni-goettingen.de
Tsveta Schyns
Tsveta Schyns-Liharska is the co-founder the ATP1A3 Disease Symposia and organiser of the Brussels (2012) meeting. She was also part of the Org Committees of Lunteren (2014), Bethesda (2015) & London (2016) .
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. She works as Cnsultant and independent expert in evaluating scientific projects at the European Commission and at the European Medicines Agency's Paediatric Committee. Email:
ts@enrah.net.
Nina Frost
Nina leads the research program for the Alternating Hemiplegia of Childhood (AHC) patient community, uniting multiple AHC patient organizations around the world. Nina has spearheaded the design, centralization, and management of a strategic portfoof therapy-forward, patient-centered research.
In collaborations with scientists and researchers, Nina champions a "patients-as-partners" model to develop and execute innovative, patient-centric studies. She has led novel initiatives to investigate the priorities and symptom burdens of the AHC population, enabling her to represent patients with authority and precision.
Nina and Simon Frost founded Hope for Annabel in 2018 to help catalyze research for therapies for AHC, and to serve as a research hub for the community. In 2025, Hope for Annabel was renamed RARE Hope to reflect a wider, dual mission to advance therapeutics-centric research for AHC and to accelerate research and therapeutics development for related rare diseases.
Nina’s prior professional experience was in management consulting. Nina and Simon met at Cambridge University, where they were graduate students together. Nina earned an MPhil in History from Cambridge University. Today, Nina works full-time to advance research for AHC.
Contact information: Nina Frost, RARE Hope,
ninafrost@gmail.com
Bridget Vranckx
Bridget Vranckxhas been the president of AHC Spain (AESHA) since 2018. As the mother of Oliver (born 2015), who was diagnosed with AHC at eight months, she has dedicated herself to raising awareness of the condition within the Spanish-speaking community in Spain and Latin America. Under her leadership, AHC Spain has expanded its reach through social media campaigns, fundraising initiatives and educational initiatives. She contributed to the organisation of an AHC Symposium in Barcelona (Spain) in 2019 and, together with the AESHA Board, hosted the 12
th ATP1A3 in Disease Symposium (2024). AESHA also facilitated several webinars to support and educate Spanish-speaking families in Latin America.
Alongside her advocacy work, Bridget pursues a professional career in copywriting and communication and brings this expertise to support and amplify the voice of the AHC and wider ATP1A3 community. With a Belgian-British background and over 20 years of living in Spain, she is adept at navigating multiple cultures and languages, helping to build bridges and strengthen international collaboration in AHC research and support.
bridget.vranckx@aesha.org
