Medical Advisory Board

The AHCF Medical Advisory Board is comprised of recognized authorities of the Alternating Hemiplegia of Childhood (AHC) disorder. At leading academic facilities, clinical hospitals, and research institutions; all have devoted their time and medical expertise to improving the lives of people afflicted with AHC.

The role of the AHCF Medical Advisory Board is to provide strategic advice and counsel, as requested by the AHCF Board of Directors, to support the mission of the Alternating Hemiplegia of Childhood Foundation.

The Medical Advisory Board also serves as a representative link between the AHC Foundation and the medical community.

It may actively engage in activities that promote education, awareness, and other activities that benefit the foundation or the community of AHC families.

The Medical Advisory Board does not make decisions for the AHCF, however, their input is highly valued, especially on medical topics related to AHC.

Duties of the AHCF Medical Advisory Board are as follows; but are in no way limited by this list. Duties may also be defined by the Medical Advisory Board as the need arises.

  1. Review AHC Foundation website and other communications for medical accuracy.
  2. Make recommendations regarding medical research grants when research funding is available. Grants of all types, including medical research grants, are allocated, determined, awarded and distributed solely by the AHC Foundation Board. The Medical Advisory Board serves as a consulting entity only, when deciding merit, applicability and value of proposed research.
  3. Promote communication among the International medical community in regard to AHC topics.
  4. Provide consultation and referrals to AHC patients as the need arises.

No Member serving on the Medical Advisory Board may be involved in active research funded by the AHCF. The size of the Medical Advisory Board is not limited and those on the Medical Advisory Board are subject to the same Conflict of Interest Policy that the AHCF Board of Directors is under.

 

Kenneth Silver, MD, MSc, F.R.C.P. (Vice Chair of the AHCF Medical Advisory Board)

Program Director,
Child Neurology Training Program,
Associate Professor
Departments of Pediatrics and Neurology
University of Chicago
Comer Children’s Hospital
5721 S. Maryland Avenue
Chicago, IL 60637
Office Postal Address:
University of Chicago Medical Center
5841 South Maryland Avenue Chicago, Ill. 60637-MC3055
Phone: 773-702-6487, Fax 773-702-4786
ksilver@pds.bsd.uchicago.edu

A Pediatric Neurologist, Kenneth Silver, MD, specializes in neuromuscular disorders, cerebral palsy, neurogenic disorders, movement disorders, headaches and epilepsy. Dr Silver is also an active researcher and is fluent in English and French. He has been in practice since 1979. He completed his MD at the University of Saskatchewan, Canada, followed by residency and fellowship at Children’s Health Center in Winnipeg, Canada, Montreal Children’s Hospital and the Montreal Neurological Institute. He is a member of the American Academy of Neurology and the American Headache Society.

Selected Publications:

Swoboda KJ, Kanavakis E, Xaidara A, Johnson JE, Leppert MF, Schlesinger-Massart MB, Ptacek LJ, Silver K, Youroukos S. Alternating Hemiplegia of Childhood or Familial Hemiplegic Migraine? A Novel ATP1A2 Mutation. Annals of Neurology; 2004 55(6): 884-887.

MacLeod H. Pytel P, Wolllmann R, Chelmicka-Schorr E, Silver K, Anderson RB, Waggoner D, McNally E. A Novel Mutation in Congenital muscular Dystrophy disrupts the Dystrophin Glycoprotein Complex Neuromuscular Disorder; 2007; 17(4): 285-289.

Jansen A, Cao H, Kaplan P, Silver K., Leonard G, Veilleux, M, DeMeirleir, L., Lissens, W., Liebaer, I., Andermann, F., Hegele, R.A., Andermann, E. Sanfilippo syndrome type D: Natural history and identification of 3 novel mutations in the GNS Gene. Archives of Neurology 2007, 64(11): 1629-34

Elkay M., Silver,K, Evaluation of Infantile Dystonia. British Medical Journal Point of Care/Epocrates online, June 2008

Sweney MT. Silver K. Gerard-Blanluet M. Pedespan JM. Renault F. Arzimanoglou A. Schlesinger-Massart M. Lewelt AJ. Reyna SP. Swoboda KJ. Alternating hemiplegia of childhood: early characteristics and evolution of a neurodevelopmental syndrome e-Pediatrics 2009; 123(3):e534-41

Elkay M., Silver,K ,Penn RD, Dalvi A, Dystonic storm due to Batten’s disease treated with pallidotomy and deep brain stimulation,MovementDisorders,2009;24

Silver K, Andermann F. Alternating hemiplagia in childhood: A study of 10 patients and results of flunarizine treatment.Neurology 43(1): 36-41, Jan 1993.

Frederick Andermann, O.C., M.D., F.R.C.P.(C)

Professor of Neurology and Paediatrics,
McGill University
Director, Epilepsy Service
Montreal Neurological Hospital & Institute
Tel: 514-739-5419
Fax: 514-739-4291
andermannf@qc.aibn.com

Dr. Andermann is a Professor in the Departments of Neurology and Neurosurgery, and Pediatrics at McGill University.  He is also the Director of the Epilepsy Service and the Epilepsy Unit at the Montreal Neurological Institute and Hospital. Dr. Andermann is one of the world’s foremost leaders in the description, diagnosis and treatment of epilepsy.  He has shown a remarkable ability to identify syndromes and assemble multidisciplinary teams of researchers to conduct further clinical investigations.  The results of his inquiries in such areas as cortical dysplasias, progressive myoclonic epilepsies, epilepsy surgery and genetically determined disorders have been published in six books and over 500 articles.  His monographs on alternating hemiplegia, Rasmussen’s Syndrome and migraine-epilepsy syndromes have contributed significantly to understanding these disorders and have led to further research in these areas.  Much of Dr. Andermann’s pioneering investigations into epilepsy have been in collaboration with his wife and colleague, Dr. Eva Andermann. They are best known for identifying in the 1970s what later came to be known as Andermann’s syndrome, a debilitating and degenerative disease of the nervous system concentrated in patients of the Saguenay and Charlevoix regions of Quebec.

Dr. Andermann has been a key figure in training neurologists and in the development of epilepsy programs around the world.  Through his vision and leadership, he has expanded his sphere of expertise by gathering around him a strong group of colleagues at the MNI that provide a rich multidisciplinary environment.  Dr. Andermann’s reputation and the environment he has built at the Neuro with Dr. Eva Andermann, have attracted fellows from around the world.  He has trained fellows from more than 15 countries, many of whom have gone on to distinguished academic careers at Harvard University, University of Melbourne, University College Hospitals in London and Tokyo Women’s Medical College.

Dr. Andermann has been recognized for his outstanding achievements with the 2003 Prix Wilder Penfield, the 2000 William G. Lennox Award from the American Epilepsy Society, the 1999 Penfield Award for Contribution in Outstanding Canadian Epileptology from the Canadian League Against Epilepsy, and the 1995 Distinguished Clinical Investigator Award from the American Epilepsy Society and Milken Foundation.  The University of Chicago has created The Fred Andermann and Pierre Gloor Award of Excellence in Clinical Neuro-physiology to be bestowed on an individual for his or her outstanding performance in clinical neurophysiology.  In 2006 he was named Officer of the Order of Canada for his work in the field of health care and in 2007 he was awarded the Peter Emil Becker Prize.

Terence Sanger, MD, PhD

Children’s Hospital Los Angeles
4650 Sunset Blvd.
Los Angeles, CA 90027
(323) 361-2471,  fax:  (323) 361-1109
terry@sangerlab.net

Terence Sanger, MD PhD, Associate Professor of Biomedical Engineering, Biokinesiology, and Child Neurology.  Dr. Sanger is an Electrical Engineer and Child Neurologist specializing in movement disorders of children. His NIH funded research includes work on understanding motor learning in children, work on the use of kinematic measurements of children to design assistive communication interfaces, and multiscale modeling of large-scale neural systems for control, with particular application to understanding the development of spasticity and dystonia.  He is the director of the Child Movement Disorders Clinic at Children’s Hospital of Los Angeles.  His laboratory has made important recent discoveries on the role of long-latency stretch reflexes in the genesis of childhood secondary dystonia

Dr Sanger received his undergrad degree and Masters of Science  both in Applied Mathematics from Harvard University. He received his MD from Harvard and went on to achieve a PhD in Electrical Engineering from MIT.

Among his many awards are:

Dystonia Medical Research Foundation Millennium award, Pfizer scholars in pediatric research award, United Cerebral Palsy Leaves of Hope award, Hume scholars award, Stanford Biodesign fellowship teaching award, American Academy of Cerebral Palsy and Developmental Medicine Goldenson award

Selected peer reviewed publications:

Goetz, CG, Stebbins, GT, … Sanger TD, … and others, 2009, Testing objective measures of motor impairment in early Parkinson’s disease: Feasibility study of an at-home testing device, Movement Disorders 24(4):551-556.

Van Doornik J., Sanger T. D., 2009, Hypertonia in childhood secondary dystonia due to cerebral palsy is associated with reflex muscle activation, Movement Disorders, 24(7):965-971.

Chu W. T. V., Sanger T. D., 2009, Force variability during isometric biceps contraction in children with secondary dystonia due to cerebral palsy, Movement Disorders, 24(9):1299-1305

Bloom, R, Przekop, A, Sanger, TD, Prolonged electromyogram biofeedback improves upper extremity function in children with cerebral palsy, J Child Neurol 25(12): 1480-1484.

Sanger, TD, Chen, D, and others, and the Taskforce on Childhood Motor Disorders, 2010, Definition and classification of hyperkinetic movements in childhood, Movement Disorders 25: 1538–1549.

Young, SJ, van Doornik, J, and Sanger, TD, 2010, Finger Muscle Control in Children with Dystonia, Movement Disorders, 26: n/a. doi: 10.1002/mds.23534.

Sanger, TD, 2011, Distributed Control of Uncertain Systems using Superpositions of Linear Operators, Neural Computation, in press.

Ongoing Research Support:

James S. McDonnell Foundation “High Speed Simulation and Prediction of the Effect of Brain Injury on Development” The major goal of this project is to develop technology and mathematics for high-speed simulation of developmental brain disorders.

NIH/NINDS/NIBIB, “High-speed simulation of developmental motor disorders.”The major goal of this project is to use high-speed programmable logic devices to simulate the development of long and short-latency reflexes and the evolution of spasticity and dystonia in children with early brain injury.

NIH/NINDS “Optimizing communication devices for children with dyskinetic cerebral palsy” The major goal of this proposal is to improve the communication rates in children with cerebral palsy who use assistive communication devices to communicate.

Joshua Magleby, PhD

Clinical Neuropsychologist
Integrative Neuropsychology Inc.
Consulting Psychology Inc.
3250 West Market Street, Suite 106
Fairlawn, Ohio 44333
(p) 330-873-9516, (f) 330-864-8678
maglebyphd@gmail.com
http://www.cpini.com/

Joshua Magleby, PhD is a licensed clinical neuropsychologist who focuses on the assessment and treatment of neuropsychological and psychological disorders for all age ranges. He is primarily interested in child and adolescent psychological and neuropsychological disorders, including ADHD, learning disorders, Traumatic Brain Injury, disruptive behaviors, anxiety, depression, PTSD and sleep problems. He is currently the director of Consulting Psychology/Integrative Neuropsychology, Inc., a full-time broad-based private psychology and neuropsychology practice located in Fairlawn, Ohio, with satellite offices in Canton, Kent and downtown Cleveland. He is a member of Division 40 [Neuropsychology] of the American Psychological Association, and the Ohio Psychological Association.

Dr. Magleby is a frequent lecturer on topics related to neuropsychological and psychological assessment, learning and executive function disorders, brain development, behavior management, brain-based learning, motivation, and the effects of stress and sleep deprivation on the brain. He has taught at the undergraduate and graduate levels at The University of Utah, Westminster College and Towson State University, and published research in the areas of memory and rare childhood neurodevelopmental disorders.

Dr. Magleby holds a doctorate degree in Educational Psychology from The University of Utah. He completed his predoctoral internship in Pediatric Neuropsychology and Child & Family Therapy at the Kennedy Krieger Institute/Johns Hopkins School of Medicine, after completing a 1-year school-based predoctoral internship in Utah. He then completed a 2-year residency in Clinical Neuropsychology at The Cleveland Clinic, where he specialized in Pediatric Neuropsychology but completed rotations in Adult Neuropsychology as well.

Prior to entering private practice, Dr. Magleby worked as a neuropsychologist and assessment supervisor for Applewood Centers Inc., a large community-based mental health center in downtown Cleveland.  He has specialized training through experiences at LeBonheur Children’s Hospital [Memphis, TN], CBTU Autism School [Salt Lake City, UT], Neurobehavior Clinic [Salt Lake City, UT], and Stixrud & Associates [Silver Spring, MD] as well as placements in centers specializing in assessing and treating Tourette’s syndrome and Obsessive-Compulsive Disorder.

Marcio A. Sotero de Menezes, MD

Director, Pediatric Neurology and Epilepsy
Swedish Neuroscience Institute, Pediatric Neuroscience Center and Genetic Epilepsy Clinic
Swedish Medical Center
Clinical Associate Professor, University of Washington Department of Neurology
Marcio.SoteroDeMenezes@swedish.org

 

Personal Interests: Meditation, Martial Arts and Brazilian culture

Medical School: Rio de Janeiro State University -Faculdade de Ciencias Medicas

Residency: HSE-RJ Brazil (Peds); Loyola Medical Center (Peds); Massachusetts General Hospital/Harvard Medical School (Child Neurology)

Fellowship(s): The Children’s Hospital – Boston – Harvard Medical School

Board Certifications: Board Certified in Neurology with Special Qualification in Child Neurology and Clinical Neurophysiology (ABNP)

Additional Information: Genetic Epilepies, SCN1A-mutations related epilepsy, Autossomal Dominant, Nocturnal Frontal Lobe Epilepsy, Familial Temporal Lobe Epilepsy, Familial Temporal Lobe Epilepsy with Auditory Features, (Familial Lateral Temporal Lobe Epilepsy), Familial Mesial Temporal Lobe Epilepsy, Surgical Treatment and Evaluation of Epilepsy, Vagus Nerve Stimulator Treatment for epilepsy, Skilled in intraoperative neuromonitoring.

 Suzanne D. DeBrosse, MD

Clinical Geneticist
Center for Human Genetics
University Hospitals Case Medical Center
Lakeside 1500
11100 Euclid Avenue, Mailstop LKS 6055
Cleveland, OH 44106
Phone: 216.844.3936
Fax: 216.844.7497
suzanne.debrosse@uhhospitals.org

Suzanne D. DeBrosse, M.D. is a clinical geneticist in the Center for Human Genetics at University Hospitals Case Medical Center, and a Clinical Assistant Professor of Genetics at Case Western Reserve University in Cleveland, Ohio. She is a graduate of Case Western Reserve University School of Medicine, and completed residencies in Pediatrics and Child Neurology at Rainbow Babies & Children’s Hospital. She completed her residency in Medical Genetics at University Hospitals Case Medical Center.

Dr DeBrosse is board certified in Pediatrics, Neurology with Special Qualification in Child Neurology, and Medical Genetics. She practices clinical genetics with a focus on diseases of the nervous system in children and adults.

Matthew T. Sweney, MD., M.S. (Chair of the AHCF Medical Advisory Board)

University of Utah, Division of Pediatric Neurology
Clinical Instructor/Clinical Neurophysiology Fellow
Primary Children’s Medical Canter
100 N Mario Capecchi Drive
Salt Lake City, Utah 84113
801-587-7575
sweney@genetics.utah.edu

Matthew Thomas Sweney, MD, MS is originally from Lincoln, NE, and attended the University of Nebraska-Lincoln where he received his BS in Biosystems Engineering.  Afterward, Matthew attended the University of Minnesota-Twin Cities and received his Masters in Biomedical Engineering. He returned to Nebraska and attended the University of Nebraska, College of Medicine, where he received his MD in 2004. After graduation, Matthew completed his pediatric residency at the combined University of Nebraska-Creighton University training program. He came to the University of Utah in 2007 and completed a one year Research Fellowship studying Alternating Hemiplegia of Childhood with Katherine Swoboda, MD prior to completing his fellowship in general child neurology in 2011.  Following his child neurology, he completed a one-year clinical neurophysiology fellowship with focus on electroencephalography and epilepsy.  He is currently appointed as an assistant professor of pediatric neurology with special emphasis on epilepsy.

Dr Sweney’s past research interests have included ocular drug delivery and neuroprotective measures in stroke management during his graduate training. He has published on congenital malformations and steroid use in neonatal critical care during his general pediatric training.  Currently, he continues to investigate the genetic and clinical aspects of Alternating Hemiplegia of Childhood as well as focusing efforts on improving epilepsy care for children in Utah and surrounding areas.  He is board certified in both general pediatrics and neurology with special emphasis on child and adolescent care.

Mary Zupanc M.D.

Medical Director of the CHOC Children’s Comprehensive Epilepsy Program and Chief of the Division of Neurology

1201 W La Veta
Orange, CA 92868
phone: (714) 509-7601
fax: (714) 509-7650

mzupanc@CHOC.ORG

Dr. Mary Zupanc joined the PSF-CHOC-UCI faculty on February 1, 2011 as Director of the Comprehensive Epilepsy Program and Chief of the Division of Child Neurology. Dr. Zupanc is one of the country’s most highly regarded pediatric epileptologists. She received her MD degree at UCLA, her pediatric training at the University of Washington and her pediatric neurology training at the University of Wisconsin. Her training in advanced epilepsy has been broad, with additional training at the University of Wisconsin, UCLA, and Stanford University. She has been instrumental in the development of comprehensive pediatric epilepsy programs at Mayo Clinic, Columbia University, and NYU School of Medicine. Since 2001, Dr. Zupanc has been the Director of the Comprehensive Epilepsy Program and Chief of the Child Neurology Division at Children’s Hospital of Wisconsin in Milwaukee. Dr. Zupanc is boarded in Pediatrics by the American Board of Pediatrics and in Child Neurology by the American Board of Psychiatry and Neurology. She is boarded in Clinical Neurophysiology by both the American Board of Psychiatry and Neurology and the American Board of Clinical Neurophysiology.

Dr. Zupanc is highly esteemed for her scholarship and contributions to the advancement of Pediatric Neurology. She has presented at numerous nationally and internationally recognized lecture series and is a much sought after speaker.

Among Dr. Zupanc’s many awards are those for teaching recognition and clinical care at each of the major institutions she has served. She has published many articles in peer reviewed journals, most notably the Journal of Pediatric Neurology regarding pediatric epilepsy surgery and outcomes, the efficacy of Felbamate, and infantile spasms. Dr. Zupanc is the author of 15 textbook chapters including the chapter on epilepsy surgery in the primary textbook in the field: Pediatric Neurology.

Links to Dr. Zumpanc’s videos and articles can be found here: http://www.choc.org/findadoc/index.cfm?id=P00348&pid=1643