DSF MERCHANDISE - Key Persons
Job Titles:
- Member of the Board
- Vice President of Her Family 's Business, Mike Hooks
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.
Clare's daughter, Alexis, had her first seizure before she was three months old. In 2006, at the age of 17 months, she was diagnosed with Dravet syndrome. During this difficult journey, the Dravet Syndrome Foundation has been a lifeline for their family, connecting them to a supportive community and giving them hope for a cure by pushing the research forward.
In March 2011, the Carey family hosted Luck Be Alexis Tonight, a casino night fundraiser for DSF. The fundraiser marked a turning point in coping with a disorder they had little control over. The support they received from their family, friends, and community was incredible. It has become an annual event and a way for them to make a positive impact.
Clare is originally from England. Her professional career began as a dancer, giving her a wonderful opportunity to travel around the world, and ultimately brought her to the United States. She then made a career change, and in 2002 graduated from the University of Utah with a Master's degree in Physical Therapy. Her career as a physical therapist was short, as she chose not to return to work after Alexis began having seizures.
Clare lives in Boise, Idaho with her husband and three children. They enjoy all the fabulous recreational opportunities around them. Recently, Clare has started drum lessons, which has proved to be mentally stimulating and very therapeutic!
Job Titles:
- Member of the American Academy of Pediatrics
Dr. Dlugos is a member of the American Academy of Pediatrics, the American Academy of Neurology, the American Epilepsy Society, the American Clinical Neurophysiology Society, and the Child Neurology Society. Dr. Dlugos is a frequent lecturer locally and at national medical meetings on topics related to pediatric neurology, epilepsy, and electroencephalograms. He has published papers in journals such as Neurology, Epilepsia, Archives of Neurology, Pediatric Neurology, and Journal of Child Neurology.
Ethan Goldberg, MD, PhD, is a pediatric neurologist in the Division of Neurology at Children's Hospital of Philadelphia (CHOP) and Director of the Epilepsy NeuroGenetics Initiative (ENGIN). He sees patients in the Neurogenetics Clinic at CHOP.
Dr. Goldberg specializes in the diagnosis and care of children with neurodevelopmental disorders including epilepsy, developmental delay/intellectual disability, and autism spectrum disorder. He has a particular interest in the genetic basis of these disorders, and has specific expertise in evaluating and caring for children with Dravet syndrome and other epilepsies due to ion channelopathy such as KCNC1, SCN2A, SCN3A, and SCN8A-related epilepsies.
"I am interested in how alterations in the building blocks of brain function lead to large-scale brain dysfunction such as is seen in these disorders, and in the development of new treatments and potentially cures for such conditions," he says.
Along with his work at CHOP, Dr. Goldberg is an Assistant Professor in the Departments of Neurology and Neuroscience at the Perelman School of Medicine at the University of Pennsylvania.
Dr. Goldberg's research focuses on the mechanisms of these neurodevelopmental disorders. He notes that advances in neurogenetics - the study of the role of genetics in the development and function of the nervous system - have drastically improved diagnoses. Advances in brain science hold promise for innovative new treatments, he says.
"Modern 21st-century neuroscience techniques such as stem cell technology, large-scale electrical recordings, optogenetics, novel imaging techniques, and computational neuroscience approaches allow us to dream of new ways to use genetic information to develop specific therapies," he says. Learn more about Dr. Goldberg's research in the Goldberg NeuroLab.
Job Titles:
- Physician
- Jude 's Research Hospital
Dr. Mefford is a physician scientist with training in pediatrics and human genetics. She works for the Center for Pediatric Neurological Disease Research at St. Jude Children's Research Hospital, and has a research laboratory devoted to the discovery of novel genetic and genomic causes of pediatric disease.
A major focus of her group's work is to identify genetic causes of pediatric epilepsy. Using state-of-the-art technology, including next-generation sequencing, the group has recently identified numerous new epilepsy genes. She has also been involved in the discovery and characterization of several new genomic disorders - conditions caused by small deletions or duplications (copy number changes) of DNA. Examples include deletions of chromosomes 1q21, 15q13, and 17q12, each of which causes a range of clinical features. She is continuing to investigate individuals with these conditions to better understand the variable outcomes.
Using the same technologies, her research group works to discover new genes and copy number changes that underlie a variety of pediatric conditions. Examples include neurocognitive disorders such as autism and intellectual disability and congenital abnormalities including craniosynostosis and kidney defects. Mefford's clinical interests parallel her research interests and include seeing patients with genomic disorders and patients with neurocognitive defects of unknown etiology.
Job Titles:
- Associate Professor of Pharmacology
Jennifer Kearney, PhD, associate professor of Pharmacology, focuses her research on studying the genetic modifiers that influence the clinical severity of epilepsy. She received her Ph.D. in Neuroscience from The University of Michigan in 1997. She remained at The University of Michigan for postdoctoral training in Genetics and joined the faculty in 2002 as a Research Investigator in Human Genetics. In 2007, she moved to Vanderbilt University to join the Division of Genetic Medicine and the Institute for Integrative Genomics. In July of 2014, Dr. Kearney joined the Department of Pharmacology at Northwestern University Feinberg School of Medicine.
Since joining Northwestern Medicine, she described a new mutation linked to severe childhood epilepsy in a paper published in the Oct. 2014 issue of Annals of Neurology. Her team found an anomaly in a potassium channel gene that causes neurons to misfire, which can lead to seizures and disrupted development. Her research program is focused on studying the genetic basis of epilepsy and epileptic encephalopathies. Isolation of epilepsy genes will help us understand the underlying pathophysiology and suggest novel therapeutic strategies for improved treatment of patients. Her lab uses classical genetic approaches to identify modifier genes in mouse models and then investigates whether the same genes contribute to epilepsy risk in human patients. One of their current projects is focused on identifying genetic modifiers of Dravet syndrome, a severe epileptic encephalopathy in which patients have intractable epilepsy accompanied by intellectual disability and autistic features. They developed a mouse model of Dravet syndrome that exhibits variable phenotype severity depending on the genetic background. Identifying genetic modifiers and understanding how they contribute to disease development and progression may suggest novel, genome-guided therapeutic strategies. The ultimate goal of her research is to translate our genetic knowledge toward precision medicine in epilepsy and improve patient outcomes.
Job Titles:
- Board Co - Chair University of Michigan Medical Center
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 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.
Her research has focused on the physiology and pharmacology of voltage-gated sodium channels and the role of sodium channel mutations in epilepsy, cardiac arrhythmia, and demyelinating disease. She has played a critical role in using translational research to model and find treatment for a rare form of infantile epilepsy known as Dravet syndrome (DS) that increases risk for Sudden Unexpected Death in Epilepsy (SUDEP). The syndrome has been linked to loss of function mutations in the SCN1A gene that causes an improper folding of Na V 1.1 channels in GABAergic interneurons. Decreased excitation of GABA interneurons can lead to neuronal hyper-excitability and seizures as well as cardiac arrhythmias. Dr. Isom's lab has published over 90 articles and received $22 million in funding to investigate genetic links between neuronal excitability and epileptic encephalopathy.
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.
Job Titles:
- Head
- Cook Children 's Medical Center
- Director of the Genetic Epilepsy Clinic
Dr. Perry is the Head of Neurosciences and Director of 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.
Dr. Meisler is the Myron Levine Distinguished University Professor, Professor of Human Genetics and Professor of Neurology at the University of Michigan Medical School. She earned her PhD at The Ohio State University in Physiological Chemistry and carried out postdoctoral training funded by a NSF Postdoctoral Fellowship at the Roswell Park Cancer Institute.
For the past 25 years, Dr. Meisler's lab has focused on the role of sodium channel mutations in epilepsy, studying human genetic disorders and mouse models that are relevant to human health. The lab most recently identified VAC14, a cause of pediatric neurological decline.
Dr. Meisler served as the first president of the International Mammalian Genome Society, a Fellow of the American Association for the Advancement of Science, and a Senior Fellow in the Michigan Society of Fellows. She received an Eleanor Roosevelt Cancer Fellowship, and from the University of Michigan the Distinguished Faculty Achievement Award, Myron Levine Distinguished University Professorship in Human Genetics, Sarah Goddard Power Award, and Distinguished Faculty Lectureship Award. She has also served on the AES Scientific Program Committee, the External Advisory Board of the Center for Molecular Genetics at Wayne State University, the American Society of Human Genetics Program Committee, and the Scientific Advisory Board of the Dravet Syndrome Foundation.
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 Steps Toward a Cure 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 Campaign Director in late 2016.
Nathan lives in Atlanta, Georgia with his wife Whitney, and his two sons: Cooper 5 and Colton 3. Cooper had his first seizure at 7 months of age. He had many subsequent seizures before his he was diagnosed at age 2 with Dravet syndrome, when he was found to carry a SCN1A gene mutation. Nathan and his wife also received genetic testing, and it was revealed that Whitney was a silent carrier of the exact gene mutation. They discovered this when she was 6 months pregnant with their second son Colton. The doctors said there was a 50/50 shot that Colton would also carry the gene mutation. On delivery, Colton was tested, and was found to carry the gene mutation. Colton's first seizure was also at 7 months, and he received a diagnosis of Dravet syndrome.
Nathan joined the Board of Directors to help advocate not only for his sons, but also for all the current and future individuals, as well as their families, that will have to navigate his condition. His goal is to spread awareness, raise funds, and work with companies to find better treatments, and one day a cure.
Nathan works full time in medical device sales. He enjoys most spending quality time with his family. For recreation, he competes in triathlons during the year. He has been able to turn his triathlon events into an opportunity to fundraise, by soliciting donations through social media. Nathan's goal is to scale this technique, and recruit numerous others to participate in fundraising during their own race events.
Job Titles:
- Business Consultant
- Vice President
Santiago Alessandro Anaya is a 3 yr old warrior and he will soon be having a baby brother, Ezequiel. His mommy is Valeria and his daddy is Jose Angel. We live in Del Rio, Tx. Santiago spends a lot of time with his grandparents Aurora and Carlos who also know what to do in case of a seizure and has been with him in every hospitalization. He loves playing drums and many other instruments. He enjoys music and swimming.
Veronica joined DSF in 2020. She has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic and molecular regulation contribute to complex neurological diseases. In 2007, Veronica had a son, Gabriel, who faced severe developmental challenges. Gabriel presented with initial seizure activity within his first two months of life, and his medical needs quickly became quite complex. Despite endless testing, a diagnosis remained elusive, and at the age of 8, Gabriel passed away.
These experiences fueled Veronica's passion to advance medical research and shaped her desire to support other families facing similar challenges. She hopes to apply her scientific knowledge and her understanding of the caregiver experience to support the Dravet community by facilitating Dravet-focused research and acting as a liaison between researchers, professionals, and families.
Veronica currently lives in Tennessee. She enjoys spending time with her partner Scott and their pets and being outdoors in her free time.