Theresa V. Strong

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Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB). After postdoctoral studies with Dr. Francis Collins at the University of Michigan, she joined the UAB faculty, leading a research lab focused on gene therapy for cancer and directing UAB’s Vector Production Facility. Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In 2016, she transitioned to a full-time position as Director of Research Programs at FPWR. She remains an Adjunct Professor in the Department of Genetics at UAB. She and her husband Jim have four children, including a son with PWS.

Tania Markovic

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Tania Markovic is the Director of the Metabolism & Obesity Services, a Senior Staff Specialist in the Department of Endocrinology at the Royal Prince Alfred Hospital in Sydney and a Clinical Associate Professor at the Charles Perkins Centre, University of Sydney. For the past 20 years, her clinical work and research have revolved around the understanding and management of obesity. As the director of a large multidisciplinary weight management clinic at a tertiary referral centre she has been involved in all aspects of the care of patients with complex obesity. Her team treats a diverse group of patients with obesity using many forms of therapy, including education programs, group and individual counselling, very low energy diets, pharmacotherapy and surgery. She is the director of the Metabolism & Obesity Service, where she runs a clinic dedicated to managing adults with Prader-Willi Syndrome.

Elizabeth Roof

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Elizabeth Roof has worked with children and teens with PWS for almost 30 years at Vanderbilt University. Elizabeth has been licensed since 1994 as a Health Service Provider in Psychology in the state of Tennessee and has been doing research with Elisabeth Dykens since 2003, focused on the psychiatric, behavioral and adaptive strengths in PWS and WS. Elizabeth has personally evaluated over 450 individuals with PWS and WS.  Elizabeth has trained 27 research staff over the years, who take that expertise with them to graduate, medical, and nursing school, and out into the real world. Elizabeth also works with residential and clinical professionals and schools to provide best practices for those living with PWS and WS. Elizabeth has managed 5 NIH trials and 11 clinical trials in PWS since 2014 and works with sponsors to identify best outcome measures, study designs, and logistics that best suit PWS families. Elizabeth has spoken at PWS and WS conferences across the US, Canada, Europe, and Australia. She loves meeting new families and continuing to have lasting relationships with many families over the years.

Jennifer Miller

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Dr. Miller is a Professor in the division of pediatric endocrinology at the University of Florida . She graduated with her M.D. from the University of Florida in 1998, and her M.S. in Clinical Investigation from the University of Florida in 2005. She has done all of her training in pediatrics and pediatric endocrinology at the University of Florida. She specializes in the care and treatment of individuals with Prader-Willi syndrome and other genetic causes of early-onset excessive weight gain. She has been working towards achieving an appropriate treatment for hyperphagia in patients living with Prader-Willi syndrome for the past 12 years. She currently follows over 500 patients with Prader-Willi syndrome from around the world.

Dr. Jo Sourbron

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Dr. Jo Sourbron, MD, PhD, MPharm, is a physician scientist with a clinical practice at the University Hospitals of Ghent (UZ Ghent, Belgium) and a postdoctoral researcher at the University of Leuven (UZ/KU Leuven, Belgium).

Dr. Sourbron has a special interest in genetic forms of epilepsy and clinical trials for drug-resistant forms of epilepsy. He has been a preclinical researcher for over a decade, focused on finding novel serotonergic (5-HT) compounds for drug-resistant epilepsies. Dr. Sourbron has explored the efficacy and safety of a variety of anti epileptic drugs including, 5-HT2 agonists like fenfluramine and lorcaserin in various animal models.

For the past five years, he has been particularly involved in research involving epilepsy with eyelid myoclonia (EEM) with prominent photic induction (Sunflower syndrome). Concomitantly, he was involved in the pilot clinical trial of fenfluramine in Sunflower syndrome patients. Finally, he participated in several other clinical trials for drug-resistant epilepsies, such as cannabidiol in the treatment of drug-resistant epileptic disorders.

Jacqueline French

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Jacqueline French is a professor of Neurology in the Comprehensive Epilepsy Center at NYU Grossman School of Medicine and Founder/Director of the Epilepsy Study Consortium, an academic group that has performed a number of early phase epilepsy trials. Dr. French trained in Neurology at Mount Sinai Hospital in New York, and did her fellowship at Mount Sinai hospital and Yale University. Dr. French serves as the Medical Director of the Epilepsy Foundation. She is the past president of the American Epilepsy Society. She has authored over 300 articles and chapters, and lectures internationally on use of antiseizure medicines.

Dennis J. Dlugos, MD

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Dennis J. Dlugos, MD, is Professor of Neurology and Pediatrics at the University of Pennsylvania; and Director, Pediatric Epilepsy Program at Children’s Hospital of Philadelphia (CHOP). He received his MD from Columbia University College of Physicians and Surgeons, New York. He completed internship in Pediatrics at the National Naval Medical Center, Bethesda, Maryland; residency in Neurology-Child Neurology at the University of Pennsylvania/CHOP; and Epilepsy fellowship at CHOP.

Dr. Dlugos currently serves as a Vice-President of the Epilepsy Study Consortium, Incorporated (ESCI).  As Vice-President, he coordinates reviews and adjudications for pediatric epilepsy trials, and participated in discussions with FDA regarding extrapolation of efficacy for focal-onset seizures to one-month to age, and the validity of Developmental and Epileptic Encephalopathy broadly (DEE Other) as a clinical indication for pivotal trials and FDA labelling.  Dr. Dlugos is also a member of AES and the Pediatric Epilepsy Research Consortium (PERC).  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 helped train more than 30 pediatric epilepsy fellows.  He has presented extensively throughout the US, South America, Europe, and

Terence J. O’Brien

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Terence J. O’Brienis Chair of Medicine (Neurology) and Head, The School of Translational Medicine, Monash University and Program Director, Alfred Brainand Deputy Director of Research, Alfred Health. He is a specialist in neurology and clinical pharmacology, with particular expertise in epilepsy and neurodegenerative diseases, pre-clinical and clinical trials, and in-vivo imaging in animal models and humans.He leads a large translational research team undertaking both basic studies and clinical studies focused on developing improved treatments for people with epilepsy and related brain diseases, including traumatic brain injury, dementias and brain tumours.He has published >850 peer-reviewed original papers which have been highly cited (>42,000 times GS). He has been a PI on >200 clinical trials, including 8 that have been translated from his basic discovery research program.He has trained and mentored multiple students, fellows and early carer researchers, from Australia and many countries of the world, including to completion 55 doctoral students, 11 masters students, 80 honours/medical research students, 22 post-doctoral research fellows and 29 clinical epilepsy fellows. He has received 18 research awards from national and international scientific bodies.

Michael P. Bogenschutz, MD

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Michael P. Bogenschutz, MD, an acknowledged leader in the field of psychedelic medicine, is Director, NYU Langone Center for Psychedelic Medicine and Professor, Department of Psychiatry at NYU Grossman School of Medicine. Dr. Bogenschutz’s research interests include substance-related disorders, alcoholism, hallucinogens, emergency services, and alcohol-related disorders. He is actively engaged in numerous clinical trials and research studies, including one entitled, “Leveraging Biomarkers for Personalized Treatment of Alcohol Use Disorder Comorbid With PTSD.” In 2021, he was named Director of the newly created NYU Langone Center for Psychedelic Medicine, which was created to support health-focused research across the translational spectrum, from basic science to phase III clinical trials, with three transdisciplinary areas of focus: psychiatry, medicine, and preclinical research. Dr. Bogenschutz received his MD from Harvard University.

Robert C. Malenka, MD, PhD

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Robert C. Malenka, MD, PhD, is the Pritzker Professor of Psychiatry and Behavioral Sciences, Director of the Nancy Pritzker Laboratory and Deputy Director of the Wu Tsai Neurosciences Institute at Stanford University. His laboratory conducts research on the molecular mechanisms of neural communication, as well as the role of circuit dysfunction in brain disorders including addiction, Alzheimer’s, autism, and depression. He is currently engaged in a clinical trial entitled, “Engaging Self-regulation Targets to Improve Mood and Weight and Understand Mechanism in Depressed and Obese Adults.” After graduating from Harvard College, Dr. Malenka received an MD and a PhD in Neuroscience from Stanford University School of Medicine.

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