Our Team

Staff

Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition to her role at DSF she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council, the Rare Epilepsies Network Steering Committee, as well as several advisory panels.

She has owned and managed several small businesses with an emphasis on project management in the private sector for over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational development and staff management and has continued to expand programming and fund development for DSF.

Mary Anne resides in Illinois with her husband and the youngest of her three children, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.

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jamie-cohen

Jamie holds a B.S. in accounting from Rutgers University and is a licensed certified public accountant. She has 7 years of experience in public accounting and over 10 years experience in nonprofit accounting. She currently serves as the accountant and Program Director for Dravet Syndrome Foundation. When not working, she enjoys volunteering her time, running, and being with her family. She and her husband Jason have three children, including a daughter who has a SCN1A-related seizure disorder.

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Misty resides in South Carolina, with her husband Ben and their two children, Braxton and Allie. In 2009 her son, Braxton, was diagnosed with Dravet syndrome at just 15 months old. With very little information given to them by their neurologist, they immediately went online in search of other parents to help educate and guide them in the right direction. After meeting with one of the founders of DSF, Misty knew that one day she would become part of the “Fight for a Cure”.

Soon after, her journey to raise funds for the foundation took off! Between 2010 and 2016 she hosted five events raising over $100,000.00. Her events have included two walks, a golf tournament, a 5K and a Burn-a-thon. Her mission in life is to spread awareness about Dravet syndrome, mentor parents of newly diagnosed children and help raise funds for patient assistance and research. Misty joined the DSF staff as their Steps Toward a Cure Campaign Director in late 2016.

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Wendy joined the DSF staff in early 2018. She is a former elementary school teacher living just north of Philadelphia, PA with her husband Greg and daughter, Penny. After her family was impacted by Dravet, Wendy became involved with the epilepsy community as a fundraiser and advocate. Since 2015 she’s raised over $100,000 for organizations like the Dravet Syndrome Foundation.

In the volunteer role of Parent Ambassador, Wendy helped to plan and execute the first annual Day of Dravet events for the Northeast Region in 2017 and to lay the groundwork for the Dravet Family Network. As an active member of the Dravet community Wendy is astounded daily by the expertise, compassion, and helpfulness of fellow Dravet families. These heroes are amazingly educated and empathetic as they provide minute-by-minute support to one another. Having known firsthand the sacrifices and challenges newly diagnosed families face, Wendy hopes to provide comfort, resources, and a sense of community to those who are adjusting to their lives as caregivers for a family member with Dravet syndrome.

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Jenny joined the DSF staff part-time in early 2019. She was born and raised in Morris County NJ where she lives with her partner Dennis and her daughter Lena, who has Dravet syndrome and autism. At 8 1/2 months old, Lena had her first status seizure and she continued to suffer uncontrolled tonic-clonic seizures, absence seizures and myoclonic jerks. At age two, genetic testing revealed a mutation of the SCN1A gene and a diagnosis of Dravet syndrome.

Jenny has her BA in Psychology from the College of Saint Elizabeth. She is an active member of her community serving as the Parent Coordinator for the Special Education Parent’s Advisory Group, a member of the Family Leaders for Perform Care of NJ, a member of The Regional Family Support Planning Council #1, and a POAC Autism Services member. She serves as a DSF Parent Ambassador for the Northeast region. And, she also started a “Sensory Sensitive Santa” night in her town and is working to develop a special needs ministry. You can usually find Jenny sporting purple or driving around in her awareness-cladded jeep, appropriately dubbed “HOPE”. Her motto is “a cure for more moments” and her goal is to help replace all the moments our children lose with full, healthy lives. 

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Board of Directors

Nicole lives in Colorado with her husband and three sons, the youngest of whom (age 11) has Dravet syndrome. After studying chemistry and physics at Carleton College and the University of Minnesota, Nicole earned her Master’s of Science Education from the University of Minnesota. She worked in research and development at the University of Minnesota and for a small wet chemistry company for several years before teaching chemistry and physics. She has been using that background to encourage and support parents of children with Dravet syndrome since shortly after her son’s diagnosis in 2008. Nicole volunteers with the Epilepsy Foundation of Colorado, and in her spare time likes to ski, hike, and enjoy the outdoors with her family.

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Ted lives in Bannockburn, Illinois with his wife Pat. They have three adult children, two who are married, They have two granddaughters, and the youngest Anna was diagnosed with Dravet Syndrome in 2018. Ted has been in leadership roles at both large and small companies in the pharmaceutical industry over the last 40 years. Dr. Ted earned his Ph.D. from University of Minnesota, and a B.S. and M.S. from the University of Missouri. When Anna was diagnosed, her parents and extended family turned to the DSF for information and support. Ted and his family believe strongly in the foundation’s mission, and have devoted their efforts to fundraising. Ted as a board member wants to apply his experience and know-how to help further the goals of the foundation to the benefit of all Dravet patients and families.

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Kate’s daughter Morgan was diagnosed with Dravet Syndrome at only 6 months old.  Although they received an early diagnosis, Morgan was medically fragile for the first 2 years of life; suffering frequent seizures and related medical complications.  Her family turned to organizations like the Dravet Syndrome Foundation for guidance and support.  The outreach and leadership of the organization inspired Kate to get involved in advocacy work.

She joined Compassionate Care NY in 2013, a group raising awareness for patients using or in need of medicinal cannabis in New York state.  She currently volunteers as State Director. 
Prior to this, Kate spent 10 years in the wedding gown industry focusing on production and logistics for companies such as Pronovias, Priscilla of Boston, Reem Acra, and Marchesa.  She graduated from the Chicago Academy for the Arts, a performing arts high school, and is passionate about supporting young artists.  She lives Westchester County, NY and enjoys exploring the Husdon Valley with her husband and Morgan.

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tim-wood-webTim lives in Marin County, Northern California, with his wife Ashley, their son Owen and twin daughters, Mimi and Piper – who has Dravet syndrome.

Soon after Piper’s first prolonged tonic clonic seizure on December 31, 2006 at 8 months old, genetic testing confirmed a SCN1A mutation. Soon after Piper’s diagnosis, Tim found strength and purpose advocating for Dravet syndrome. His work with DSF is driven by a belief that all those affected by Dravet syndrome may benefit from improved awareness and continuously improving best practices.

Tim is inspired by the collective work of DSF’s Scientific and Medical Advisory Boards, staff workers, volunteers, fundraisers, donors along with his fellow board members and their efforts leading towards life changing research and advancements for Dravet.

When not spending time with his family, Tim enjoys mountain biking, trail running, tennis, skiing and painting.

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nichelle-headshotNichelle currently lives in southern Spain with her husband and three children. Her youngest son Logan was diagnosed with Dravet syndrome in April of 2016 when he was almost 2 years old. Despite his typical 5-6 seizures a year, Logan is doing very well. He loves riding his bike, rollerblading, playing at the beach with his cousins, is bilingual and is learning to read and write.

Nichelle started volunteering in 2016 shortly after diagnosis and joined the board of directors in 2017. Nichelle has a Degree in Business Administration and assists with the marketing and awareness campaigns and the dravetfoundation.org website. In her spare time she likes to ride horses and is currently learning dressage.

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jenny-t

Jenny lives in Menomonee Falls, Wisconsin, with her husband, son and daughter. Jenny is the mother of three children, a stay-at-home mom, a student, and a volunteer at the local children’s hospital. Jenny’s oldest daughter Maddie, was diagnosed with Dravet syndrome in 2008 and lost her battle with the syndrome when she died in June of 2010, at the age of 2 ½.

Jenny joined the board in 2012 and her focus as a board member is now offering support to parents and family members who have lost a child due to Dravet syndrome. She began her schooling through the University of Wisconsin Milwaukee, working to obtain her license to become a grief counselor. Jenny also works with the bereavement coordinator at the Children’s Hospital of Wisconsin campus. Jenny takes what she has learned on her grief journey to help other bereaved parents. She believes that no parent should have to grieve alone.

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Ashley resides in Westlake, Louisiana with her three children, Michael, age 9, and Samuel, age 6, and Katie, age 1.

Ashley’s daughter, Katie was diagnosed with Dravet Syndrome at six months old. The Dravet Syndrome Foundation and community is a source of strength and comfort to her. She is proud to be part of an organization that will work tirelessly at making the world a better place for our children. Ashley currently serves on the committee for the Double-Down fundraiser in Houston, Texas.

Ashley Kerns is Vice President of her family’s business, Mike Hooks, LLC.  The company is among the largest dredging contractors in the country. Ashley received her Bachelor of Science Degree in Civil Engineering from Louisiana Tech University in 1999. She also obtained a Masters Degree in Business Administration from McNeese State University in 2002.

Ashley is an active member of several professional organizations. She has served on the Board of the Dredging Contractors of America (DCA) since 2011. In 2014, Ashley was elected President of that organization and served a second term as President in 2016. Ashley is the first female President of DCA and the first President to serve consecutive terms.  Ashley was also selected to serve on the Board for the Western Dredging Association in 2016.

Ashley enjoys serving in various community organizations. Ashley was the President of the Parent Teacher Organization and a School Board Member at her sons’ school from 2017 to 2018. Ashley has also held various positions on other local community organizations. She served as Vice President of Finance/Treasurer for several years for the Junior League of Lake Charles and was awarded “Active of the Year” in 2014. She also served as a Board Member for the Literacy Council of Southwest Louisiana for many years and chaired the fundraising committee.

In her free time, Ashley enjoys running, mountain biking, hiking, and traveling.

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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 syndrome 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 Syndrome as well as the principal investigator at UCSF for the Epilepsy Genetics Initiative.

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Medical Advisory Board

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 expertise 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; serve as a representative link between DSF and the medical community; and update the best practices for the North American Dravet Syndrome Treatment Consensus.

Dr. Laux with a patient

Dr. Laux with a patient

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

Dr. Andrade is the Medical Director of the Epilepsy Program of University Health Network, University of Toronto. She is the founder and Director of Krembil Neuroscience Adult Epilepsy Genetics Program, where she studies the causes and long-term outcomes of pediatric-onset epilepsies. Dr. Andrade is also the Director of the Epilepsy Transition Program, a program in collaboration with The Hospital for Sick Children that helps promote coordinated, smooth and efficient transition from the pediatric to the adult health systems for patients with intractable epilepsy. She was the chair of the epilepsy implementation task force sub-group for the development of Guidelines for Transition in Epilepsy for the Province of Ontario.

Dr. Andrade graduated in Medicine at Universidade Federal do Parana (Brazil) and completed her Neurology Residency at Hospital N.S. Gracas (Brazil). She then completed a Masters of Sciences at The Hospital for Sick Children, University of Toronto, Canada, studying “Protein Therapy for Unverricht-Lundborg Progressive Myoclonus Epilepsy”. In 2006 Dr. Andrade completed an Epilepsy and Clinical Electrophysiology Fellowship at Toronto Western Hospital, University of Toronto.

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

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

Dr. Perry is the Medical Director of Neurology and the Genetic Epilepsy Clinic at the Jane and John Justin Neurosciences Center of Cook Children’s Medical Center, Fort Worth, TX. He completed his MD at the University of Mississippi School of Medicine and general pediatrics and child neurology training at Emory University. He completed a Clinical Neurophysiology fellowship at Miami Children’s Hospital before joining Cook Children’s in 2009. His clinical and research interests include the use of epilepsy surgery for the treatment of intractable childhood epilepsy and the evaluation and treatment of genetic epilepsy syndromes.

Laureate Professor Ingrid Scheffer is a physician-scientist whose work as a paediatric neurologist and epileptologist has led the field of epilepsy genetics over 25 years, in collaboration with Professor Samuel Berkovic and molecular geneticists. This resulted in identification of the first epilepsy gene and many more genes subsequently. Professor Scheffer has described many novel epilepsy syndromes and refines genotype–phenotype correlation. Her major interests are in the genetics of the epilepsies, epilepsy syndromology and translational research. She has research projects in genetics of speech disorders, autism and intellectual disability. She led the first major reclassification of the epilepsies in two decades as Chair of the International League Against Epilepsy Commission for Classification and Terminology. Awards include American Epilepsy Society Clinical Research Recognition Award, 2013 GSK Award for Research Excellence, ILAE Ambassador for Epilepsy Award, 2013 Emil Becker Prize for child neurology and Asia-Pacific L’Oréal-UNESCO Women in Science Laureate for 2012. She is a Fellow of the Australian Academy of Science and Vice-President of Australian Academy of Health and Medical Sciences. She was co-recipient of 2014 Prime Minister’s Prize for Science and received the Order of Australia in 2014.

joseph-sullivan-mdJoseph 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 syndrome 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 Syndrome as well as the principal investigator at UCSF for the Epilepsy Genetics Initiative.

elaine-wirrell-mdDr. 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.

Scientific Advisory Board

Dravet Syndrome Foundation’s Scientific Advisory Board (SAB) oversees the organization’s research activities. They review and approve all research grant applications and meet annually with other interested researchers and scientists to discuss innovative and promising research in the field of Dravet syndrome and associated epilepsies at DSF’s Research Roundtable.

Jack M. Parent, MD, is a professor of neurology, director of the Neurodevelopment and Regeneration Laboratory, and co-director of the Comprehensive Epilepsy Center in the University of Michigan Medical School. His current research interests include modeling severe childhood epilepsies with patient-derived cells using induced pluripotent stem cells, neural stem cell transplantation to treat brain injury and neurodegeneration, and the modification of adult neural stem cells to promote brain repair after stroke or to prevent epilepsy.

Dr. Parent earned a Bachelor of Arts degree, with distinction, in human biology from Stanford University and his medical degree from the Yale University School of Medicine. He completed a medical internship and neurology residency at the University of California, San Francisco (UCSF), where he was selected chief resident. He stayed at UCSF for clinical fellowship training in epilepsy and clinical neurophysiology, and postdoctoral training in neuroscience research. An internationally recognized research leader in the fields of neural stem cell biology, regeneration after brain injury and epilepsy, Dr. Parent established the Neurodevelopment and Regeneration Laboratory at the U-M in 2000.

Dr. Parent serves on the Board of Directors of the American Epilepsy Society and as Secretary of the American Neurological Association, and is a member of the Epilepsy Foundation of America Research Council, the Medical Advisory Board of the Global Ischemia Foundation, and the Independent Scientific Review Panel of the New Jersey Commission on Brain Injury Research. He is also Epilepsy Section Editor of Experimental Neurology. Associate Editor for Basic Science of Epilepsy Currents, Associate Editor of Frontiers in Neurogenesis, and is on the editorial boards of Brain Plasticity and Stem Cells International. He has received several awards for his research, including a Paul Beeson Physician Faculty Scholars in Aging Award, a Dreifuss-Penry Epilepsy Award from the American Academy of Neurology, and a Grass Foundation Award in Neuroscience from the American Neurological Association.

Dr. Isom is the Maurice H. Seevers Professor and Chair of the Department of Pharmacology, Professor of Molecular and Integrative Physiology, and Professor of Neurology at the University of Michigan Medical School. Prior to becoming Chair of Pharmacology she served as Director of the Program in Biomedical Sciences and Assistant Dean for Graduate Education in the University of Michigan Medical School. She received her PhD in Pharmacology at Vanderbilt University School of Medicine and then trained as a postdoctoral fellow in the laboratory of Dr. William A. Catterall at the University of Washington. Dr. Isom’s postdoctoral research included the first cloning, sequencing, and expression of voltage-gated sodium channel SCN1B and SCN2B, encoding b1 and b2 subunits, respectively. Dr. Isom’s laboratory at the University of Michigan focuses on voltage-gated sodium channel structure, function, and role in epileptic encephalopathy, including Dravet syndrome.

Her laboratory employs a variety of techniques, including cellular and molecular biology, genetics, and electrophysiology. Highlights of Dr. Isom’s research program include the discovery that sodium channel b subunits, in addition to functioning as ion channel modulators, are multi-functional cell adhesion molecules of the immunoglobulin superfamily that regulate neuronal migration, pathfinding, and fasciculation. She reported the first mutation in SCN1B linked to Dravet syndrome and collaborates with Dr. Jack Parent and Dr. Miriam Meisler to investigate SCN1A, SCN1B, and SCN8A epileptic encephalopathy mutations in mouse models and human induced pluripotent stem cell (iPSC) neurons and cardiac myocytes. In addition to her research activities, Dr. Isom serves as PI of an NIH funded T32 grant, co-chairs the Dravet Syndrome Foundation Scientific Advisory Board with Dr. Parent, serves on NIH grant study sections and editorial boards of scientific journals, and has received awards for research and mentoring, including a recent NINDS Javits R37 MERIT award and the University of Michigan Rackham Distinguished Graduate Mentoring Award. In 2011, she was elected a Fellow of the American Association for the Advancement of Science for her work in Neuroscience and Graduate Education.

Scott C. Baraban, PhD is a Professor of Neurological Surgery and William K. Bowes Jr. Endowed Chair in Neuroscience Research at the University of California, San Francisco. Dr. Baraban’s lab studies the cellular and molecular basis of epilepsy, specifically catastrophic epilepsies of childhood. While some seizures can be controlled with available medications, a large number of pediatric epilepsy patients are medically intractable. Combining pharmacology, genetics, electrophysiology, cell transplantation, and unique zebrafish models of genetic epilepsies they are identifying new treatments for these patients.  The first zebrafish models for epilepsy were developed in the Baraban lab over 15 years ago and recent drug screening efforts in a zebrafish model for DS have led to new therapeutic candidates. Publications from the Baraban laboratory (>100) have appeared in Science, Nature Neuroscience, Nature Communications, Journal of Neuroscience, Proceedings of the National Academy of Sciences, and Neuron.

Dr. Baraban is the recipient of awards from the Esther and Joseph Klingenstein Fund, the Sandler Family Supporting Foundation, the UCSF Innovation in Basic Science Award, a EUREKA grant and Javits Neuroscience Award from the NIH. In 2016, he received the Basic Science Research Recognition Award from the American Epilepsy Society. He was co-Chair (with Jack Parent) of the 2014 Gordon Research Conference on epilepsy and Scientific Program Committee Chair for the 2015 AES meeting. He serves on the Scientific Advisory Board of the Dravet Syndrome Foundation, the Gruppo Famiglie Dravet association (Italy) and as a regular member of CNNT study section at NIH.

Dennis J. Dlugos, MD, is Professor of Neurology and Pediatrics in the Perelman School of Medicine at the University of Pennsylvania; and Director, Pediatric Regional Epilepsy Program at The Children’s Hospital of Philadelphia (CHOP). He received his MD from Columbia University College of Physicians and Surgeons, New York. He went on to complete his internship in Pediatrics at the National Naval Medical Center, Bethesda, Maryland; a residency in Pediatrics at Thomas Jefferson University, Philadelphia, Pennsylvania, and Alfred I. duPont Institute, Wilmington, Delaware; a residency in Neurology / Child Neurology at the University of Pennsylvania Medical Center and CHOP; and his fellowship in Epilepsy and Clinical Neurophysiology, CHOP.  He is a member of the American Epilepsy Society, and serves as Chair of the Education and Professional Development Committee. Dr. Dlugos serves as Vice-President of the Epilepsy Study Consortium, which is dedicated to improving the quality of epilepsy clinical trials.

His clinical and research interests include clinical trials, epilepsy genetics and pharmacogenetics, epilepsy surgery, and intensive-care EEG monitoring. Articles authored or co-authored by Dr. Dlugos have been published in Neurology, Annals of Neurology, Lancet Neurology, Epilepsia, Lancet, Nature, the New England Journal of Medicine, and other journals. Dr. Dlugos has been NIH-funded since 2001, and has mentored 30 pediatric epilepsy fellows.  He has lectured extensively throughout the US, Europe, South America and Asia.

Ethan Goldberg, MD, is Assistant Professor of Neurology & Neuroscience in the Division of Neurology at The Children’s Hospital of Philadelphia and Departments of Neurology & Neuroscience at The University of Pennsylvania School of Medicine in Philadelphia, PA. He received a PhD in Physiology & Neuroscience at New York University in 2006 under the direction of Bernardo Rudy as well as an MD at NYU. He completed residency training in pediatrics and child neurology and post-doctoral training in the laboratory of Douglas Coulter at CHOP.  He is now an Attending Physician in the Neurogenetics Program at The Children’s Hospital of Philadelphia and leads a biomedical research laboratory studying the pathophysiology of pediatric epilepsy.

sookyong-koh-md

Dr. Koh is a pediatric neurologist with a clinical and research specialization in epilepsy at Children’s Healthcare Atlanta. She is a Marcus Professor in Neurology and Associate Professor, Division of Neurology, Department of Pediatrics at Emory University School of Medicine. Her research is focused on understanding the progressive disease processes and brain damage that devastate many children with epilepsy.

Professional Organizations
American Epilepsy Society, Child Neurology Society, American Academy of Neurology, Society for Neuroscience

Medical School
University of Rochester, 1991

Postgraduate Training

  • Clinical Epilepsy Fellowship, Children’s Hospital Boston, 1998-2001; Clinical and Research
  • Fellowship in Epilepsy, Mass General Hospital,1996-1998; Residency in pediatric neurology,
  • New England Medical Center, Boston, 1993-1996; Residency in pediatrics, New England
  • Medical Center, 1991-1993; Postdoctoral fellowship in neurobiology and anatomy, University of
    Rochester, 1989

Certifications

  • Board certified in: Neurology with special qualifications in Child Neurology;
  • Neurology with special qualification in Epilepsy

Dr. Mefford is an Associate Professor of Pediatrics at the University of Washington in the Division of Genetic Medicine and attending physician at Seattle Children’s Hospital in the Genetic Medicine Clinic. Dr. Mefford’s research laboratory is devoted to the discovery of novel genetic and genomic causes of pediatric disease. A major focus of their current work is to identify causes of pediatric epilepsy by employing state-of-the-art technologies including whole exome sequencing, targeted gene panel sequencing and custom array comparative genomic hybridization (aCGH). The Mefford lab has discovered numerous new epilepsy genes and copy number variants. Dr. Mefford has also been involved in the discovery and characterization of several new genomic disorders, including deletions of chromosomes 1q21, 15q13 and 17q12, each of which cause a range of clinical features. She is continuing to investigate individuals with these conditions to better understand the variable outcomes. Dr. Meffords clinical interests parallel her research interests and include seeing patients with genomic disorders and patients with severe epilepsies and neurocognitive defects of unknown etiology.

miriam-meisler-phd-university-of-michiganDr Meisler’s laboratory is studying neurological disease mutations in genes encoding human voltage- gated sodium channels and phosphoinositide metabolism. To examine the molecular mechanisms of pathogenesis, we generate mouse models of specific human mutations. We are screening patient populations to identify new disease mutations. In related projects, we are cloning several new mouse mutants, using genomic tools including human/mouse genomic sequence comparisons to identify noncoding regulatory sequences.

Education

1968: Ph. D. Ohio State University, Biological Chemistry

1963: B. A. Queens College, CUNY. B. A., Chemistry and Biology

Honors and Awards

2005: Distinguished Biomedical Faculty Lectureship, University of Michigan

2001: AAAS Fellow

1997-99: President, International Mammalian Genetics Society

1995: Sarah Goddard Power Award, University of Michigan

1993: Distinguished Faculty Achievement Award, University of Michigan

1975: Basil O Connor Scholar Award, March of Dimes

2011: Distinguished University Professor, University of Michigan

Selected Publications

  • Lenk GM, Ferguson CJ, Chow CY, Jin N, Jones JM, Grant AE, Zolov SN, Winters JJ, Giger RJ, Dowling JJ, Weisman LS and Meisler MH (2011) Rescue of neurodegeneration by transgenic expression of a pathogenic variant of FIG4 responsible for Charcot-Marie-Tooth Disease, PLOS Genetics, 7(6):e1002104162.
  • Freilich ER, Jones JM*, Reyes C, Meisler MH* and Pearl PL (2011) Novel SCN1A mutation in a patient with Malignant Migrating Partial Seizures of Infancy, Arch. Neurol. 68:665-671.
  • Nicholson G, Lenk GM, Reddel S, Grant AE, Towne CF, Ferguson CJ, Simpson E, Scheuerle A, Yasick M, Hoffman S, Blouin R, Brandt C, Coppola G, Biesecker LG for the NIH Intramural Sequencing Center, Batish SD and Meisler MH (2011) Distinctive genetic and clinical features of CMT4J, a severe neuropathy caused by mutations in the PI(3,5)P2 phosphatase FIG4. Brain 134: 1959-1971.
  • Ferguson C., Lenk G, Meisler MH (2009) Defective autophagy in neurons and astrocytes from mice deficient in PI(3,5)P2 Human Molecular Genetics 18: 4868-4878.
  • Sharkey LM, Xiaoyang Cheng, Valerie Drews, David A. Buchner, Julie M. Jones,Monica J. Justice, Stephen G. Waxman, Sulayman D. Dib-Hajj, and Miriam H. Meisler (2009). The ataxia3 Mutation in N-Terminal Cytoplasmic Domain of Sodium Channel Nav1.6 Disrupts Intracellular Trafficking. J. Neurosci.29:2733-2741.
  • Chow CY, Landers JE, Bergren SK, Sapp PC, Grant AE, Jones JM, Everett L, Lenk GM, McKenna-Yasek DM, Weisman LS, Figlewicz D, Brown RH, and Meisler MH (2009) Deleterious variants of FIG4, a phosphoinositide phosphatase, in patients with ALS. Am. J. Hum.Genet. 84:85-88.
  • Jin N, Chow CY, Liu L, Zolov SN, Bronson R, Davisson M, Petersen JL, Zhang Y, Park S, Duex JE, Goldowitz D, Meisler MH* and Weisman LS* (2008) VAC14 nucleates a protein complex that is essential for the regulation of PI(3,5)P2 levels in yeast and mouse. EMBO J. 27:3221-34. (*co-senior authors).
  • Drews VL, Shi K, de Haan G and Meisler MH (2007) Identification of evolutionarily conserved, functional noncoding elements in the promoter region of the sodium channel gene SCN8A. Mammalian Genome 18:723-31.
  • Howell VM, Jones JM, Bergren S, Li L, Billi AC, Avenarius MR and Meisler MH (2007) Evidence for a direct role of the disease modifier SCNM1 in splicing. Human Molecular Genetics 16:2506-2516.
  • Chow CY, ZhangY, Dowling J, Jin N, Adamska M, Shiga K, Szigeta K, Shy M, Li J, Zhang X, Lupski JR, Weisman L, Meisler MH (2007) Mutation of FIG4 causes neurodegeneration in the pale tremor mouse and patients with CMT type 4G. Nature 448:68-72.
  • Kearney JA, Wiste AK, Stephani U, Trudeau MM, Siegel A, RamachandranNair R, Elterman RD, Muhle H, Reinsdorf J, Shields WD, Meisler MH, Escayg A. (2006) Recurrent de novo mutations of SCN1A in severe myoclonic epilepsy of infancy. Pediatric Neurol. 34:116-120.
  • Levin SI, Aman TK, Khaliq ZM, Grieco TM, Woodruff-Pak DS, Raman IM and Meisler MH. (2006) Impaired motor function and learning in mice with conditional knockout of the Na channel Scn8a (NaV1.6) in cerebellar Purkinje neurons and granule cells. J. Neurophysiology 96:785-93. Epub 2006 May 10.
  • Trudeau MM, Dalton JC, Day JW, Ranum LP, Meisler MH. (2006) Heterozygosity for a protein truncation mutation of sodium channel SCN8A in a patient with cerebellar atrophy, ataxia and mental retardation. J Med Genet. 43:527-30. Epub 2005 Oct 19.
  • Schmitt-JohnT, Drepper C, Mumann A, Hahn P, Kuhlmann M, Thiel C, Hafner M, Lengeling A, Heimann P, Jones JM, Meisler MH, Jockusch H (2005) Mutation of Vps54 causes motor neuron disease and defective spermiogenesis in the wobbler mouse. Nature Genetics 37:1213-1215.

Family Network Ambassadors

Family Network Ambassadors work to support our community by facilitating opportunities for engagement, support, and advocacy. Learn more about the DSF Family Network here.

Peer Support Ambassadors

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Community Engagement Ambassadors

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Social Media Ambassadors

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Investment Committee

Matthew has over 20 years of experience as a banker, working for large national banks. He holds a B.A. in Business Administration and Economics from Eastern Washington University. His primary concentration is credit analysis and portfolio management.

Matthew resides in Moses Lake which is centrally located in Washington State. He and his awesome wife of over 10 years, Afton, dote on their two beautiful boys, Makino and Makaio, every minute of every day. Makaio had his first seizure at 3 months of age in October 2017 and was diagnosed with Dravet Syndrome the following Spring. Makaio has been a warrior whose resilience never ceases to amaze. His older brother, Makino, has been a beacon of light for his family, constantly guiding them through the storms with his unbridled joy.

Matthew is resolute in his duty to advocate and fight for his sons to his full ability. He believes in the mission and approach of the Dravet Syndrome Foundation and will apply his experience to further the cause. His goal is to support others in their efforts to ultimately find a cure and spread awareness so that families may find the support they need.

Neil resides in New Jersey with his wife Jenn and their three children, Ryan, Hunter and Morgan. Neil’s daughter Robyn lives in Florida. Neil and Jenn’s son Hunter had his first seizure just shy of 1 year of age (Sept 2013) and was officially diagnosed with Dravet Syndrome just prior to his 3rd birthday (August 2015).

Neil is a senior finance and accounting executive with 20+ years of experience in finance leadership roles across industries, including Medical Device, Renewable Energy and Technology. Neil is currently the Group Controller for Stryker Corporation’s Orthopaedics businesses. Neil is a licensed certified public accountant (CPA) and graduated Summa Cum Laude with a Bachelors of Science degree in Accounting from Rider University.

Director Emeriti

Abby Hemani is a mother of three and full-time attorney. She graduated from Yale University and Harvard Law School, and she currently works as an in-house litigator at Fidelity Investments in Boston. Prior to her work for Fidelity, she clerked for two federal appeals court judges and was a member of the law firm Goodwin Procter LLP. When not working, Ms. Hemani enjoys spending time with her husband, Micah, her seven-year-old twins, Jonah and Norah, and her younger son, Nathaniel. Abby’s daughter, Norah, was diagnosed with Dravet syndrome in 2009, at eleven-months old, and Abby immediately became involved in fundraising for DSF. She joined the board in 2012 and has served as both board President and Vice President.Abby Hemani is a mother of three and full-time attorney. She graduated from Yale University and Harvard Law School, and she currently works as an in-house litigator at Fidelity Investments in Boston. Prior to her work for Fidelity, she clerked for two federal appeals court judges and was a member of the law firm Goodwin Procter LLP. When not working, Ms. Hemani enjoys spending time with her husband, Micah, her seven-year-old twins, Jonah and Norah, and her younger son, Nathaniel. Abby’s daughter, Norah, was diagnosed with Dravet syndrome in 2009, at eleven-months old, and Abby immediately became involved in fundraising for DSF. She first joined the board in 2012 and has served as both Board President and Vice President, prior to being named a Director Emeritus.

Amanda is a mom to three beautiful girls and wife to an incredibly supportive guy. The family of five lives in Connecticut. Her oldest daughter, Molly, has an unnamed syndrome that is closely associated with Dravet syndrome. Amanda has been with DSF since its inception in 2009, originally serving as a board member and then as the Executive Assistant to assist in day-to-day tasks. Upon leaving her staff position, she was appointed a Director Emeritus by the DSF Board of Directors to thank her for her many years of service to the Dravet syndrome community.

Before DSF came into her life, Amanda was a middle school music teacher and holds a Master’s degree in education. Now, in her spare time, she teaches and assists in the local adaptive arts dance and theater program and is an active member of her Church community, teaching Sunday school and singing in the choir.

Our Partners

Dravet Syndrome Foundation recognizes that by opening lines of communication, connecting scientists, and forming partnerships with doctors, researchers, and patient organizations, we can assure rapid distribution of information and avoid duplication of efforts. DSF chooses to partner with like-minded organizations who share our priorities of finding better treatments and a cure, and who share our integrity and values. Through these meaningful collaborations we can have a much greater impact than working alone. DSF welcomes partnerships with other organizations who wish to contribute and participate in projects that are in-line with their mission and which appeal to their supporters. The quickest way to a cure for a rare disease such as Dravet syndrome is through global collaboration.

Advocacy organizations, medical partners, industry or other parties interested in partnering with DSF should email Mary Anne.