DSF’s Medical Advisory Board (MAB) is comprised of recognized authorities in the clinical treatment of Dravet syndrome. They have devoted their time and medical experitse to improving the lives of those afflicted with Dravet syndrome and associated epilepsies. Their role is to provide strategic advice and counsel to support the mission of DSF. The MAB offers input on clinical trials that impact the Dravet community. They serve as a representative link between DSF and the medical community. They also update the best practices for the North American Dravet syndrome treatment consensus.


board chair

Linda Laux, MD, Ann & Robert H. Lurie Children’s Hospital

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Dr. Laux is an Attending Physician in the Neurology and Epilepsy Center of the Ann & Robert H. Lurie Children’s Hospital, as well as an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Her special interests include pediatric epilepsy and Dravet syndrome.

Education

2001: Fellowship in pediatric epilepsy, Children’s Memorial Hospital

1994-97: Fellowship in neurology/child neurology, Barrow’s Neurologic Institute/St. Joseph’s Hospital, Phoenix, AZ,

1990-93: Residency in pediatrics, University of Arizona Health Science Center

1990: St. Louis University

Certifications

Board certified in Neurology with special qualifications in Child Neurology

Neurology with special qualifications in Clinical Neurophysiology

Professional Organizations

American Epilepsy Society

American Clinical Neurophysiology Society

Child Neurology Society

board members

Kelly Knupp, MD, Children’s Hospital Colorado

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Dr Knupp is an attending physician at Children’s Hospital Colorado in Aurora, CO in Pediatric Neurology and Neurophysiology. She is Assistant Professor of Pediatrics and Neurology at the University of Colorado, School of Medicine. She is director of the Dravet program at Children’s Hospital Colorado. Her interests are Dravet syndrome, infantile spasms and early pediatric encephalopathies.

 

Education:

2002-2003: fellowship in clinical neurophysiology at the Neurologic Institute of New York, Columbia Presbyterian Hospital, Columbia University

1999 – 2002: Residency in Pediatric Neurology at Children’s Hospital of New York/ Neurologic Institute of New York, Columbia University

1997-1999: Residency in Pediatrics at Children’s Hospital of New York, Columbia University

1994-1997: University of New Mexico – School of Medicine

 

Certification:

Neurology with special qualification in Child Neurology

Clinical Neurophysiology

Professional Organizations

American Epilepsy Society

Child Neurology Society

Pediatric Epilepsy Research Consortium

 

Ian Miller, MD, Miami Children’s Hospital

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My interests in epilepsy caused by SCN1a (commonly called “Dravet syndrome”) started during my child neurology residency at the University of Washington in Seattle in 2004. I can still remember the first time my attending suggested “we should test him for SCN1a” after we obtained a history of seizures following vaccination. Having an answer for the family was simultaneously rewarding and sad: in spite of the work by Dr. Scheffer and others, we had only just begun to understand the wide spectrum of seizure severity that are possible in the disorder. However, the diagnosis did allow us to avoid spending time trying ineffective medications, and we have been slowly adding to our treatment options ever since. Similarly, our experience has increased: I have personally provided medical care for over 150 children with SCN1a-related epilepsy. As a result, we now have experience with less commonly used (but scientifically supported/non-research) medications such as stiripentol, and bromide, as well as the hope for effectiveness with medications such as cannabidiol, verapamil, fenfluramine, or tailored genetic therapy such as antisense DNA.

 

Education, Training, and Previous Positions

08/1993 – 06/1997: Colorado School of Mines, Golden, CO

08/1997 – 05/2001: M.D., University of Iowa, Iowa City, IA

07/2001 – 06/2003: Resident, Pediatrics, University of Utah, Primary Children’s Medical Center, University of Utah Health Sciences Center

07/2003 – 06/2006 Resident, Neurology and Pediatric Neurology, University of Washington, Seattle, WA

07/2006 – 06/2007 Fellow, Clinical Neurophysiology, Miami, FL, Miami Children’s Hospital, Cleveland Clinic Foundation

 

Faculty Appointments

07/2007 – present: Director of Neuroinformatics, Miami Children’s Hospital, Miami, FL

01/2008 – present: Courtesy Assistant Professor in Biomedical Engineering, Florida International University

 

Membership in Honorary and Professional Societies

01/2004 – present: American Academy of Neurology

10/2007 – present: American Epilepsy Society

07/2008 – present: MCH Patient Safety Committee

07/2008 – present: MCH IT Steering Committee

 

Selected Honors and Awards

2012: Ciara’s Butterfly Bash Honoree

2006: National EpiFellows Foundation Scientific Forum Award

2006: J. Kiffin Penry Residents Program in Epilepsy Award

2005: Child Neurology Society Annual Meeting Resident Scholarship

2005: American Academy of Neurology Annual Meeting Resident Scholarship

 

Bibliography

Refereed journal publications / Original papers

  • Tito, M. et al. Classification of electroencephalographic seizure recordings into ictal and interictal files using correlation sum. Comput Biol Med. 2009 Jul;39(7):604-14. Epub 2009 May 20. (PMID: 19467652).
  • Perry, M. et al. Predictors of seizure freedom after incomplete resection in children. Neurology. 2010 Oct 19;75(16):1448-53. (PMID: 20956789).
  • Butson, C. et al. Selective neural activation in a histologically derived model of peripheral nerve. J Neural Eng. 2011 Jun;8(3):036009. Epub 2011 Apr 11. (PMID: 21478574).
  • Oh, S. et al. In vivo optical properties of cortical tubers in children with tuberous sclerosis complex (TSC): a preliminary investigation. Epilepsia. 2011 Sep;52(9):1699-704. Epub 2011 Jul 18. (PMID: 21762450).
  • Miller, I. & Sotero, M. SCN1a-Related Seizure Disorders. www.ncbi.nlm.nih.gov/books/NBK1318/ (Written: November 29, 2007; Updated: November 10, 2011.)
  • Krsek, P. et al. Localizing value of ictal SPECT is comparable to MRI and EEG in children with focal cortical dysplasia. Epilepsia. 2013 Feb;54(2):351-8. Epub 2013 Jan 7. (PMID: 23293926).

Books, chapters, and reviews

  • Duchowny, M., and Miller, I. (2009). Interepretation of Subdural EEG. In B. Fisch & R. Spehlmann (Ed.), Fisch and Spehlmann’s Eeg Primer: Basic Principles of Digital and Analog EEG
  • Miller, I. and Tuchman, R. (2009). In P Howlin,T. Charman, and M. Ghaziuddin (Ed.), The SAGE Handbook of Developmental Disorders.

Abstracts

  • Miller, I. et al. Early Experience with Minimally Invasive Epilepsy Surgery using Laser Ablation in a Pediatric Cohort. American Epilepsy Society, 2012.
  • Bhatia, S and Miller, I., et al. Surgical failure in hemispherectomy – incomplete disconnection or contralateral epileptogenicity. American Epilepsy Society, 2008.
  • Butson, C., Miller, I., et al. Computational Model Of Axon Activation Evoked From Electrode Array Implanted In Cat Sciatic Nerve. Program No. 493.4. 2003 Abstract Viewer/Itinerary Planner. Washington, DC: Society for Neuroscience, 2003.
  • R.C. Ahrens et al. Temporal Association Between Acquisition Of Pseudomonas Aeruginosa Infection And Onset Of Declining Fev1 In Patients With Cystic Fibrosis. 10th Annual North American Cystic Fibrosis Conference. Orlando, Florida, October 24-27, 1996. Abstracts. Pediatr Pulmonol Suppl. 1996 Sep;13:74-365

Joseph Sullivan, MD, UCSF

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Joseph Sullivan is an Associate Professor of Neurology & Pediatrics and Director of the UCSF Pediatric Epilepsy Center. As a clinician, Dr. Sullivan sees patients on both the outpatient and inpatient setting and has specific interests in epilepsy surgery as well as genetic epilepsies such as Dravet and PCDH19 Girls Clustering Epilepsy.

His research has focused on EEG and clinical phenotyping of these pediatric epilepsies and he was a member of the EPGP EEG core. His current projects include a collaboration sponsored by the Dravet Syndrome Foundation using a Delphi process to look at Diagnosis and Treatment Consensus in Dravet as well as the principal investigator at UCSF for the Epilepsy Genetics Initiative.

Elaine Wirrell, MD, Mayo Clinic

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Dr. Wirrell is a Professor of Epilepsy and Child Neurology and Director of Pediatric Epilepsy at Mayo Clinic in Rochester MN. She is also a member of the Steering Committee of the Pediatric Epilepsy Research Consortium. She is particularly interested in early onset epilepsies such as Dravet syndrome. Her research focuses on the epidemiology and co-morbidities of epilepsy and on outcomes with various therapies.

Education:

1989                       M.D. Honours, University of British Columbia, Vancouver, B.C.

1989-1993            Pediatrics Residency, IWK Hospital for Children, Halifax, Nova Scotia

1993-1996            Pediatric Neurology, Epilepsy Fellow, IWK Hospital for Children, Halifax, Nova Scotia

Selected Publications:

1. LD Hamiwka, EC Wirrell. Co-morbidities in Pediatric Epilepsy: Beyond “Just” Treating the Seizures. J Child Neurol. 2009;24 (6):734-42.

2. B Moseley*, K Nickels, J Britton, E Wirrell. How common is ictal hypoxemia and bradycardia in children with partial complex and generalized convulsive seizures? Epilepsia 2010;51:1219-24.

3. Wirrell EC, Grossardt  BR, So EL, Nickels KC. A Population-Based Study of Long-term Outcomes of Cryptogenic Focal Epilepsy in Childhood: Cryptogenic Epilepsy is NOT Probably Symptomatic Epilepsy. Epilepsia 2011;52(4):738-45.

4. Wirrell EC. Grossardt  BR, Wong-Kisiel L, Nickels KC. Incidence of New-Onset Epilepsy and Epilepsy Syndromes in Children in Rochester, Minnesota from 1980-2004: A population-based study. Epilepsy Research 2011;95:110-8.

5. Carranza Rojo, D, Hamiwka L, McMahon JM, Dibbens LM, Asrov T, Suls A, Bayly MA, Burke C, Stodberg T, Kelley K, Dalatycki M, Wirrell E, Appleton R , Mackay M, Freeman JL, Berkovic SF, Bienvenu T, De Jonghe P, Thorburn DR, Mulley JC, Mefford HC, Scheffer IE. Migrating partial seizures of infancy is uncommonly associated with SCN1A mutations. Neurology 2011;77:380-3.

6. AM Quek, JW Britton, A McKeon, E So, VA Lennon, C Shin, CJ Klein, RE Watson, AL Kotsenas, TD Lagerlund, GD Cascino, GA Worrell, EC Wirrell, KC Nickels, KP Wandinger, SJ Pittock. Autoimmune epilepsy: clinical characteristics and response to immunotherapy. Arch Neurol 2012;69(5):582-93.

7. E Wirrell, L Wong-Kisiel, J Mandrekar, K Nickels. Predictors and Course of Medically Intractable Epilepsy in Young Children Presenting Before 36 Months of Age: A Population-Based Study. Epilepsia 2012;53(9):1563-9.

8. KC Nickels, BR Grossardt, EC Wirrell. Epilepsy-related mortality is low in children: a 30 year population-based study in Olmsted County, MN. Epilepsia 2012;53:2164-71.

9. JC Mulley, B Hodgson, JM McMahon, X Iona, S Bellows, S Mullen, K Farrell, M Mackay, L Sadleir, A Bleasel, D Gill, R Webster, EC Wirrell, M Harbord, S Sisodiya, E Andermann, S Kivity, SF Berkovic, IE Scheffer, LM Dibbens. The role of the sodium channel SCN9A in GEFS+ and Dravet syndrome. Epilepsia 2013;54:.122-6.

10. E Wirrell, L Wong-Kisiel, J Mandrekar, K Nickels. What predicts enduring intractability in children who appear medically intractable in the first 2 years after diagnosis? Epilepsia, 2013;54:1056-64.

11. A Berg, K Nickels, E Wirrell, A Geerts, WF Arts, P Callenbach, C Rios, P Camfield, C Camfield. Mortality risks in new-onset childhood epilepsy. Pediatrics 2013;132:124-31.

12. E Wirrell, L Laux, DN Franz, J Sullivan, RP Saneto, RP Morse, O Devinsky, H Chugani, A Hernandez, L Hamiwka, MA Mikati, I Valencia, ME Le Guern, L Chancharme, M Sotero de Menezes. Stiripentol in Dravet syndrome: results of a retrospective US study. Epilepsia 2013;54:1595-604.

13. B Moseley, L Bateman, JJ Millichap, E Wirrell, CP Panayiotopoulos. Autonomic epileptic  seizures, autonomic effects of seizures and SUDEP. Epilepsy Behav, 2013;26(3)375-85.

14. S Shull, G Diaz-Medina, S Eckert, L Wong-Kisiel, K Nickels, E Wirrell. Early efficacy of the ketogenic diet is not affected by initial body mass index percentile. Pediatric Neurol 2014;50:469-73.

15. E Wirrell, L Wong-Kisiel, K Nickels. Seizure outcome after AED failure in pediatric forcal epilepsy: impact of underlying etiology. Epilepsy Behav 2014;34:20-4.

Recent Book Chapters:

1. E Wirrell, CS Camfield, PR Camfield. Benign and Idiopathic Focal Epilepsies. In Epilepsy: Principles and Practice, 5th edition, E. Wyllie, G Cascino, B Gidal, H Goodkin (eds), Lippincott-Williams-Wilkins, 2010, pp 243-57.

2.  K Nickels, E Wirrell. Symptomatic Generalized Epilepsy. In Adult Epilepsy: G Cascino, J Sirven, J Whelass (eds), John Wiley and Sons, West Sussex, UK, 2011.

3. K Nickels, E Wirrell. Pediatric Epilepsy Syndromes. Epilepsy Continuum Edition, American Academy of Neurology, 2010;16:57-85.

4. K Nickels, E Wirrell. Benign and Malignant Epilepsies in Children. Epilepsy “Neurology in Practice”, J Miller, H Goodkin, editors, 2014.