Meet our advisory teams.
We are fortunate to be served by a dedicated and compassionate group of experts who devote their time and expertise to improving lives in the GLUT1 Deficiency community and helping the G1DF further its mission.
Medical and Scientific Advisory Team
Marisa Armeno, MD, PhD
University of Buenos AiresMarisa Armeno is a pediatrician specialized in pediatric nutrition from the University of Buenos Aires and holds a Ph.D. in Medicine from the Catholic University of Argentina, where her doctoral research focused on the long-term effects of ketogenic therapy in epilepsy. She served as a staff physician in the Clinical Nutrition Department at the National Pediatric Hospital “Dr. Juan P. Garrahan” in Buenos Aires, Argentina, for 12 years. During that time, she coordinated the hospital’s interdisciplinary Ketogenic Therapy Team for drug-resistant epilepsy and neurometabolic diseases. She is currently a principal investigator at the Centro de Investigaciones Metabólicas (CINME) in Buenos Aires, leading research projects in obesity pharmacology. In addition, she is a member of the Board of Directors and Executive Committee of the International Neurologic Ketogenic Society (INKS), and serves as Chair of its Education Committee. She is also a member of the ketogenic diet task force of the International League Against Epilepsy (ILAE) and coordinates the working group on ketogenic therapies within the Argentine Society of Nutrition (SAN). Throughout her career, she has trained colleagues in ketogenic therapy and has lectured nationally and internationally on this subject. She has published numerous research articles and recently authored her first book on ketogenic therapies for Spanish-speaking countries.
L. Felipe Barros, MD, PhD
Centro de Estudios Científicos – CECs Valdivia ChileFelipe (MD, 1988; PhD, 1993, University of Chile) has been mystified by Glut1 for a while. His PhD thesis with David Yudilevich was a study of Glut1 in the placenta, followed by a postdoc in Leeds with Steve Baldwin, working on Glut1 & Glut4 regulation. In 2000 he joined the Center for Scientific Studies, a private research institute located on the left bank of the Valdivia river in Patagonia.
Most transporters and enzymes involved in brain energy metabolism are known at the molecular level, but few of them have been characterized functionally. Virtually nothing is known about their acute regulation in situ, and that includes Glut1. Equipped with genetically-encoded sensors and time-lapse fluorescence microscopy, Barros and colleagues are trying to narrow the gap.
Ongoing collaborations are with Bruno Weber (University of Zurich; Mouse), Jimena Sierralta (University of Chile; Drosophila) and Alex Gourine (University College London; pH).
Mattia Bonzanni, PhD
Weill Cornell MedicineAfter earning my PhD in Italy, where I studied how genetic mutations linked to epilepsy and cardiac arrhythmias affect neuronal and heart cell function, I completed a postdoctoral fellowship at Tufts University. There, I focused on hyperexcitability phenotypes across different models and neurological diseases. I am now an Instructor of Neuroscience at Weill Cornell Medicine in the Pascual Lab, where my research explores the connection between cellular metabolism and neuronal activity.
Mackenzie Cervenka, MD
Johns HopkinsDr. Mackenzie Cervenka is a Professor of Neurology at Johns Hopkins School of Medicine with subspecialty training in epilepsy. Dr. Cervenka is Medical Director of the Johns Hopkins Adult Epilepsy Diet Center and the Adult Epilepsy Monitoring Unit. She developed the multidisciplinary Johns Hopkins Adult Epilepsy Diet Center in 2010 and she and her colleagues have treated over 500 adults with epilepsy, glucose transporter type 1 deficiency syndrome and refractory status epilepticus using ketogenic therapies. She conducts clinical trials examining the feasibility, safety and efficacy of ketogenic therapies in managing patients with medically resistant epilepsy and refractory status epilepticus, and also collaborates with investigators to evaluate these treatments for patients with alcohol withdrawal, glioma, migraine, multiple sclerosis, dementia, psychiatric disorders and obesity hypoventilation syndrome.
Soumalya Chakraborty, MD
Columbia University Medical CenterI am a pediatrician and medical geneticist trained in caring for children with rare genetic disorders. I completed my medical school education at the Medical College, Kolkata, followed by a residency in pediatrics at PGIMER, Chandigarh, and a fellowship in medical genetics at AIIMS, New Delhi, India. My fellowship helped me develop an interest in exploring new therapeutic avenues for children with rare genetic disorders. I was fortunate enough to have been exposed to a vast array of genetic diseases, including small and large molecule metabolic diseases. The unmet need for therapies for these diseases motivated me to turn to the bench to investigate the pathogenesis of these diseases and, in doing so, explore novel therapies along the way. I joined Dr Monani’s lab at Columbia University in 2024, and since then, I have been investigating the role of astrocytes in GLUT1 deficiency syndrome. I’ve also been trying to solve genomically unsolved cases of GULT1 Deficiency syndrome by analyzing genome sequencing data.
Darryl De Vivo, MD
Columbia University - EmeritusDarryl C. De Vivo MD
Founding Director of the Colleen Giblin Research
Laboratories for Pediatric Neurology
The Neurological Institute of New York
Columbia University Irving Medical Center
710 West 168th Street, Suite 201
New York, New York 10032-3784
Tel: 212-305-5244
Dr. De Vivo served as the Sidney Carter Professor of Neurology, Professor of Pediatrics, and Director Emeritus (1979-2000) of the Pediatric Neurology Service at Columbia University Medical Center in New York City. Dr. De Vivo received his MD Degree from the University of Virginia Medical School. Residency training in Medicine, Pediatrics, Neurology and Pediatric Neurology followed at Harvard, National Institutes of Health and Washington University. He then joined the Medical School Faculty at Washington University and over the next decade was promoted from Assistant Professor to Professor as he developed his clinical research skills in neurochemistry, metabolic diseases and neuromuscular disorders. He joined the Columbia University Faculty in 1979 as the Sidney Carter Professor of Neurology and Pediatrics and Director of the Pediatric Neurology Service.
Dr. De Vivo was the Founding Director, Colleen Giblin Research Laboratories; Founding Director, Pediatric Neuromuscular Disease Center, Co-Director of the Center for Motor Neuron Biology and Diseases (MNC) and Associate Chairman (Neurology) for Pediatric Neurosciences. Dr. De Vivo was a Director for Neurology and President of the American Board of Psychiatry and Neurology, Secretary of the American Academy of Neurology, and President of the Child Neurology Society. He has published more than 500 original articles and reviews, lectures extensively in the U.S. and abroad, served on several editorial boards and advisory committees, and was a former associate editor for Rudolph’s Textbook of Pediatrics and editor of “Neuromuscular Disorders in Infancy, Childhood and Adolescence: A Clinician’s Approach”, recognized as the standard reference in the field. Dr. De Vivo received funding from the NIH, DOD, SMA Foundation, MDA, Hope for Children Research Foundation, Milestones for Children, Glut1 Deficiency Foundation and the Will Foundation. He served as the Director for the PNCR Clinical Trials Network for SMA and he oversaw several other sponsored clinical trials involving rare diseases such as MELAS, spinal muscular atrophy, muscular dystrophy and Glut1 Deficiency.
Kelly Faltersack, MS, RD, LDN, CD
University of Wisconsin-MadisonKelly Faltersack is a registered dietitian nutritionist at UW Health in Madison, Wisconsin. Kelly has over 10 years of experience as a registered dietitian nutritionist. She has five years of experience in neuro intensive care and has specialized in ketogenic diet therapy for adults with epilepsy and other neurological conditions since 2016. Kelly has co-authored publications on ketogenic diet therapy, and has presented to a variety of groups, including the American Epilepsy Society, Epilepsy Foundation of Wisconsin, Glut1 Deficiency Foundation, and the Wisconsin Academy of Nutrition and Dietetics.
Elizabeth Felton, MD, PhD
University of Wisconsin-MadisonElizabeth Felton, MD, PhD is an Assistant Professor of Neurology and Biomedical Engineering at the University of Wisconsin School of Medicine and Public Health. She specializes in epilepsy and her clinical interests include ketogenic therapy for adults, special issues affecting women, neurostimulation and pediatric to adult transitions. She is the UW Health Ketogenic Diet Program Director and Women’s Epilepsy Clinic Co-Director. She established the UW Health Adult Neurology Ketogenic Diet Therapy Clinic and developed a parallel clinical research program.
Dr. Felton is a graduate of the American Academy of Neurology Diversity Leadership Program and is the UW-Madison Department of Neurology Diversity, Equity and Inclusion Officer. She is involved in several DEI efforts locally as well as nationally with her professional societies. She is passionate about reducing neurology health disparities, educating about implicit bias, and improving diversity and representation in the sciences. She is involved in outreach efforts and mentoring to learners at every level ranging from elementary school to junior faculty.
Matthew Gentry, PhD
University of FloridaDr. Matthew S. Gentry is Professor & Chair of Biochemistry & Molecular Biology in the College of Medicine at University of Florida. He is a prominent brain metabolism scientist who has made seminal discoveries in the realm of brain glycogen and glucose metabolism and how perturbations in these pathways impact neuro-centric diseases. Dr. Gentry has nearly 20 years of experience working on glycogen storage diseases (GSD). He did research on cell signaling and cell division at Syracuse University for his Ph.D and then worked on the GSD and childhood dementia called Lafora disease as a postdoctoral scholar in the laboratory of Dr. Jack Dixon at UC-San Diego where he defined the biochemical properties of the genes mutated in the disease. Building on this foundational biochemistry, he has been continuously funded by NIH since 2007 along with funding from foundations and industry. His lab works on a number of diseases linked to perturbed metabolism with many being CNS-centric, focusing on defining disease mechanisms, pre-clinical drugs and clinical biomarkers. He has published >100 scientific papers and holds multiple patents.
HC Glick, MD
St. Francis Hospital
HC Glick, MD
St. Francis Hospital
Prof. Dr. Jörg Klepper
Children's Hospital AschaffenburgDr. Klepper is the Medical Director of Aschaffenburg Children’s Hospital in Aschaffenburg, Germany. Dr. Klepper’s clinical interests include disorders of brain energy metabolism such as Glut1 Deficiency and pyruvate dehydrogenase. His research interests include the mechanisms and adverse effects of the ketogenic diet on these disorders and establishing international protocols for the use of the ketogenic diet for epilepsy and metabolic disorders. Dr. Klepper earned his medical degree at Frankfurt/M and Würzburg University and completed his pediatric training at Würzburg and Essen University in Germany. He then completed his fellowship at Columbia University in New York City. In addition to his role at Aschaffenburg Children’s Hospital, Dr. Klepper serves as a consultant for pediatric neurology at Essen University and a lecturer on pediatrics at Essen University and Würzburg University. He is a board member of the Neuropaedriatric Society and a member of the German Paediatric Society.
Eric Kossoff, MD
Johns HopkinsDr. Kossoff is a Professor of Neurology and Pediatrics at Johns Hopkins University in Baltimore, Maryland. He received his medical degree from SUNY at Buffalo School of Medicine in New York, followed by a residency in pediatrics at Eastern Virginia Medical School in Norfolk, Virginia. He completed a fellowship in child neurology and then pediatric epilepsy at Johns Hopkins Hospital in Baltimore. He has been at Johns Hopkins for over 20 years, since 1998. His research and clinical practice focuses on the diagnosis and treatment of childhood seizures and epilepsy, particularly treatments other than medications such as diet, neurostimulation and surgery. Currently the Medical Director of the Pediatric Ketogenic Diet Center at Johns Hopkins, Dr. Kossoff is one of the world experts on ketogenic dietary therapy for neurologic disorders and developed the Modified Atkins Diet for children and adults in 2003. He is dedicated to bringing the use of diet therapies for neurologic disorders to the entire world and was recently the leader of a Task Force within the International League Against Epilepsy to help achieve this goal. He is a coauthor of The Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders, now in its 6th edition, and helped organize both the 2008 and 2018 expert consensus guidelines on ketogenic diet management. Dr. Kossoff is also very involved in teaching and mentorship, and is the Director of the Child Neurology Residency Program at Johns Hopkins.
Umrao Monani, PhD
Columbia UniversityDr. Umrao Monani is Professor of Neurology (in Pathology & Cell Biology) at the Columbia University Medical Center and the Director of the Colleen Giblin Research Laboratory at the medical center. He is also a founding member of the Columbia University Center for Motor Neuron Biology & Disease. Dr. Monani received his PhD at the Ohio State University School of Medicine and has spent many years engaged in the study of the neuromuscular disorder, spinal muscular atrophy (SMA). He was amongst the first to develop viable SMA model mice and his work has informed SMN repletion treatments for the human disease. More recently, Dr. Monani has turned his attention to Glut1 deficiency syndrome (Glut1 DS) and shown that gene replacement strategies are highly effective in treating a mouse model of the human disease. These studies also revealed novel brain microvasculature defects resulting from Glut1 deficiency. Currently, Dr. Monani’s lab is engaged in exploring the feasibility of translating the pre-clinical gene replacement findings in his lab into a viable treatment for the human condition. Dr. Monani has received several awards including the American Academy of Neurology Young Investigator Award, the Sanofi Innovator Award, the 2023 Humanitarian Award from the Hope for Children Research Foundation and the Darryl C. De Vivo Endowed Professorship at Columbia University. His lab is dedicated to the study of rare pediatric neurological diseases with a view to eventually treating them.
Juan Pascual, MD, PhD
Weill Cornell MedicineDr. Juan Pascual is chief of the Division of Child Neurology in the Department of Pediatrics at NewYork-Presbyterian Komansky Children’s Hospital and Weill Cornell Medicine, effective March 1.
Dr. Pascual oversees the child and neonatal neurology divisions with a focus on increasing access to high-quality care, expanding scientific research, and recruiting and developing faculty, clinicians and researchers. Dr. Pascual was recruited to Weill Cornell Medicine as a professor of pediatrics, of neurology and of neuroscience in the Feil Family Brain and Mind Research Institute and an affiliate faculty member in the Sage School of Philosophy in the College of Arts and Sciences on Cornell’s Ithaca campus. He will also grow the rare brain disorders program for patients with undiagnosed, complex or severe neurological diseases.
Dr. Pascual joins NewYork-Presbyterian Komansky Children’s Hospital and Weill Cornell Medicine from UT Southwestern Medical Center in Dallas, Texas, where he directed the rare brain disorders program. As one of the few actively practicing pediatric neurologists in the nation who is also a laboratory scientist, Dr. Pascual specializes in genetic and metabolic diseases of the nervous and neuromuscular systems in infants, children and adults, with an emphasis on complex disorders. He has also authored numerous peer-reviewed articles, abstracts and textbooks.
Dr. Pascual earned his medical degree with unique distinction from Universidad de Granada, Spain, followed by a doctorate in molecular physiology and biophysics at Baylor College of Medicine. He completed his residency in pediatrics at St. Louis Children’s Hospital and Washington University School of Medicine and in neurology and pediatric neurology at NewYork-Presbyterian/Columbia University Irving Medical Center.
Caroline Pearson, PhD
Weill Cornell MedicineDr Pearson is a developmental biologist with 20 years of expertise in neural stem cell biology, cortical development, and patient-derived stem cell models. Her research investigates how intrinsic and extrinsic signals regulate early human brain development, with a focus on how disruptions in metabolic pathways, particularly GLUT1-mediated glucose transport, contribute to neurodevelopmental disorders. Her lab leverages induced pluripotent stem cells (iPSCs), 3D cerebral organoids, and transcriptomics to model early corticogenesis in vitro.
Current projects in the Pearson lab explore how GLUT1 Deficiency Syndrome (GLUT1-DS) affects progenitor cell dynamics, neurogenesis, and metabolic programming during early cortical development. Her work integrates stem cell biology, cellular metabolism, and advanced imaging and tissue analysis. The long-term goal of Dr Pearson’s research is to define disease-specific developmental trajectories and identify therapeutic interventions in rare pediatric brain disorders.
Toni Pearson, MBBS, MD
Nationwide Children's HospitalToni Pearson, MBBS, is an attending pediatric neurologist at Nationwide Children’s Hospital and professor of Pediatrics at The Ohio State University College of Medicine. Originally from Australia, she earned an undergraduate degree in music and her medical degree from the University of Adelaide. She then completed her residency training in pediatrics at the Children’s Hospital of Westmead (University of Sydney) and Montreal Children’s Hospital (McGill University), before moving to New York to undertake child neurology residency and a movement disorders fellowship at Columbia University.
Dr. Pearson is a specialist in childhood movement disorders and evaluates patients with dystonia, chorea, parkinsonism, ataxia, myoclonus, tremor, tics and spasticity. She also works in collaboration with the Comprehensive Cerebral Palsy Program at Nationwide Children’s. Her clinical research interests focus on the characterization and treatment of rare neurogenetic conditions, including work on an NIH-funded clinical trial investigating gene therapy for the neurotransmitter disorder aromatic L-amino acid decarboxylase (AADC) deficiency.
Thomas Rebbecchi, MD
Cooper University Hospital
Thomas Rebbecchi, MD
Cooper University Hospital
Jong Rho, MD
Yale University School of MedicineDr. Jong Rho is the Section Chief for Pediatric Neurology at Yale University School of Medicine. He completed his undergraduate degree in Molecular Biophysics & Biochemistry at Yale University before receiving his MD at the University of Cincinnati College of Medicine. He then completed residencies in Adult Neurology and Pediatric Neurology at the UCLA David Geffen School of Medicine in Los Angeles, CA. For over two decades, Dr. Rho has worked and conducted basic-translational research in the field of developmental neurosciences, initially with a focus on the basic mechanisms of anti-seizure medication action, and later followed by investigations into metabolism-based treatments for neurological disorders (i.e., ketogenic diet or KD) with a focus on brain mitochondria, human surgically-resected hypothalamic hamartomas, and more recently, autism spectrum disorder (ASD). His contributions to this burgeoning area of investigation can be divided into two broad domains: (1) collaborative basic-translational research; and (2) leadership in the field of neurometabolism and neurological disorders, through a combination of administrative and organizational roles in international societies, foundations and funding agencies.
Prior to his current position, Dr. Rho was chief of pediatric neurology at Rady Children’s Hospital-San Diego, held full-time academic faculty appointments at the University of Washington (Seattle) and Seattle Children’s Hospital; the University of California at Irvine; the University of Arizona and Arizona State University (Barrow Neurological Institute in Phoenix), and the Alberta Children’s Hospital and the University of Calgary (Alberta, Canada).
Dr. Rho completed residency training in pediatrics at Children’s Hospital Los Angeles (affiliated with the University of Southern California), followed by adult neurology and pediatric neurology residency/fellowship training at the University of California Los Angeles Medical Center (David Geffen School of Medicine at UCLA). He also completed a research fellowship in neuropharmacology at the National Institutes of Health. Dr. Rho received his undergraduate degree in molecular biophysics and biochemistry from Yale University and his medical degree from the University of Cincinnati.
Ivy Samuels, PhD
Louis Stokes Cleveland VA Medical Center | Cleveland ClinicDr. Ivy Samuels is a mid-career Research Biologist with a primary appointment at the Louis Stokes Cleveland VA Medical Center. She additionally holds a Staff Project Scientist position in the Department of Ophthalmic Research at the Cleveland Clinic Foundation. She earned her Ph.D. in the Department of Neurosciences at Case Western Reserve University, studying the role of Extracellular Regulated Kinase 2 in cortical development. The primary focus of her lab is investigating the mechanisms of retinal dysfunction in Diabetic Retinopathy (DR) and exploring the onset and degree of retinal dysfunction in inherited retinal disorders via electroretinography. She has studied the role of Glut1 in both Type1 and Type2 diabetes, utilizing transgenic mouse models to manipulate expression of Glut1 in specific retinal cell types. She found that reduction of Glut1 in the retina, but not RPE of diabetic mice mitigates DR by reducing polyol accumulation, oxidative stress and inflammation. She is currently studying mechanisms to reduce Glut1 in the diabetic retina and therapeutic interventions for prophylactic treatment. For her studies on the role of Glut1 in DR, she employed Dr. Darryl De Vivo’s Glut1+/- mouse and became interested in Glut1 Deficiency Syndrome. She is uniquely qualified to investigate the role of Glut1 in the retina of Glut1 Deficiency Syndrome patients and has a keen interest in identifying mechanisms controlling Glut1 expression which can be manipulated for both disorders to confer therapeutic advantage.
Rodrigo Starosta, MD, PhD
Oregon Health and Science University (OHSU)Dr. Starosta is a clinical and biochemical geneticist who sees pediatric and adult patients with a wide variety of genetic and metabolic conditions. He is particularly interested in seeing patients with lysosomal storage disorders (LSDs) and congenital disorders of glycosylation (CDGs), as well as any patient with an inherited disorder that requires complex and comprehensive medical care. His research focuses on discovering novel treatments for inherited metabolic disorders, especially LSDs and CDGs; and integrating evidence-based medicine into Medical Genetics, including exploring the role of novel genomic technologies such as whole genome sequencing and multi-omics in clinical practice.
Victoria Whiteley, RD
Royal Manchester Children's HospitalVictoria has been a dietitian for over 20 years. She joined the Royal Manchester Children Hospital in 2012 to set up the Ketogenic diet service and has developed this service to become the largest centre in the United Kingdom. She is a specialist in the field of ketogenic diet therapy and is an invited speaker and author on this subject. Her particular are of interest is in use of the diet in infants and those with inherited metabolic conditions. She supports children and young people across the North West of England with GLUT1 deficiency and she also serves on the medical board for GLUT1 Deficiency UK.
Robin Williams, PhD
Royal Holloway University of LondonRobin Williams is a research scientist, in the field of molecular cell biology, with a special interest in dietary treatments for epilepsy. He investigates how dietary treatments, and current medicines work at a molecular and cellular level. His research, often in collaboration with clinicians, has led to important advances in understanding dietary treatments, including the development of a new dietary approach for the treatment of people with a diagnosis of drug-resistant epilepsy. He has discovered direct therapeutic roles for medium chain fatty acids, beyond ketones, providing new insight to the use of related diets. His interests also include metabolic effects of diets and expanding their use to those with other disorders including cancer and bipolar disorder. In these roles, he has helped to validated and expand the use of dietary approaches to improve the health and quality of life for all.
Prof. Dr. Michél Willemsen
Radboud UniversityDr. Willemsen completed medical school and his residencies in pediatrics, pediatric neurology, and adult neurology at Radboud University Medical Center in Nijmegen, The Netherlands. He has been a professor of Pediatric Neurology at Radboud since 2012 where he also serves as the head of the Pediatric Neurology Department and the head of Radboud UMC Expert Centre for Genetic Movement Disorders. His fields of clinical and research interest include pediatric movement disorders, neurometabolic and neurodegenerative disorders, especially Sjögren-Larsson syndrome, Ataxia Telangiectasia, Glut1 Deficiency Syndrome, and neurotransmitter biosynthesis defects. Academic teaching contributions include international courses and research focused on the same disorders, leading to numerous publications. Dr. Willemsen is a member of the board of the Dutch Society of Pediatric Neurology, the European Pediatric Neurology Society, and the International Child Neurology Congress. He is a member of many other international organizations on pediatrics, neurology and inborn errors of metabolism; local and national committees on health issues linked to pediatrics and pediatric neurology; and scientific boards of international congresses. He is a member of the editorial boards of the European Journal of Pediatric Neurology, Neuropediatrics, and Developmental Medicine and Child Neurology.
Professional Advisory Team
Kristin Engelstad, MS, CGC
Columbia University Medical CenterKristin Engelstad MS, CGC
Genetic Counselor and Clinical Coordinator
Department of Neurology
Columbia University Irving Medical Center
NI 2nd Floor
710 W. 168th St
New York City, NY 10032
Tel: 212-305-6834
Kris is a board certified genetic counselor at Columbia University. She has a long history of involvement with natural history studies and clinical trials for patients with Glut1 Deficiency Syndrome. She is also involved with various clinical studies in mitochondrial disorders. In addition, Kris provides genetic counseling services for the Columbia University Neuromuscular Clinic and for various clinical trials.
Karthik Rajasekaran, PhD
Jazz PharmaceuticalsKarthik is a neuroscientist with expertise in medical affairs, translational research and drug development, dedicated to advancing innovative treatments for neurologic disorders. He is experienced in medical strategy, real-world evidence generation, due diligence, and cross-functional collaboration, leveraging data-driven insights to inform decision-making. He plays a key role in advancing medical affairs by translating scientific innovation into meaningful patient impact through strategic execution, collaboration, and data-driven insights.
Beth Zupec-Kania, RDN, CD
The Charlie FoundationBeth is a world-renowned ketogenic expert, clinician, and speaker. She is a registered and certified dietitian and nutritionist. For over 25 years, she has coached medical professionals, patients and families through safe and effective use of nutritional ketosis for neurological disorders, certain cancers and other metabolic based conditions that require careful formulation and laboratory surveillance. Alongside her private practice, she is the primary consultant for the Charlie Foundation. Her work is about health and hope.