Meet Our Speakers

Mel Anderson is the Director and Chair of the PURA Foundation Australia, a volunteer non-profit organisation dedicated to supporting individuals and families affected by PURA syndrome across Australia and New Zealand. Her involvement with the foundation is deeply personal; Mel’s daughter, Sarah, was the first Australian diagnosed with PURA syndrome in 2014. Through her involvement with the PURA Foundation Australia, Mel has been a driving force in advancing research focused on understanding and treating PURA syndrome. The foundation supports studies that aim to deepen clinical knowledge, drive translational epilepsy research, and offer meaningful insights for patients and their families. 

In addition to her leadership role in Australia, Mel served as a founding board member of the PURA Syndrome Foundation and held the position of Research/Scientific Liaison from 2015 to 2019, where she played a key role in developing a global research network for PURA syndrome and supporting both clinical and scientific research efforts. Through her leadership and advocacy, Mel continues to make significant contributions to the international PURA syndrome community, striving to improve the lives of those affected by this rare neuro-developmental disorder.

Dr. Lauren Dengle Sanchez is both a Pediatric Neurologist and a mother of a child with PURA Syndrome. After obtaining her bachelor’s degree in Molecular and Cell Biology at Texas A&M and her medical degree from McGovern Medical School in Houston, Texas, Dr. Sanchez completed a Pediatrics and Pediatric Neurology residency at UT Southwestern Medical School in Dallas. She remained at UT Southwestern after graduation in 2014 as an Assistant Professor of Pediatric Neurology. She is also the Associate Program Director of the Pediatric Neurology residency program at UT Southwestern. In her role in medical education she trains medical students and residents and helps usher in the next generation of pediatric neurologists. In her clinical practice, she sees pediatric patients with general neurological concerns, with a special focus on brain tumors and the rare disorder Neurofibromatosis type 1. Her research experience has focused on the rare disorders Glut 1 transporter deficiency and Mucopolysaccharidosis type IIIc.

Lauren is also the mother of a young child with PURA Syndrome. As a pediatric neurologist, Lauren is lucky to have prior clinical experience with this syndrome which allowed her to recognize the syndrome early in her daughter and led to a rapid diagnosis. She has learned a lot from being on the other side of the medical interactions. She is grateful to now be learning from the experience of other families of people with PURA Syndrome. Lauren hopes that her combination of experience from a physician’s and a parent’s perspective could be applied to help current and future PURA families.

Professor Michael Hildebrand is a senior neurogenetics researcher who heads the Translational Neurogenetics Laboratory in the Epilepsy Research Centre, Melbourne Brain Centre. He was promoted to Professor of Medicine at The University of Melbourne in 2023 at age 42 years. Professor Hildebrand’s research program has resulted in major advances in the field of epilepsy through integrated research arms focused on solving developmental and epileptic encephalopathies, speech and language disorders, and trialling drug therapies for vascular malformations. 

These discoveries have had clinical impact with new genetic diagnoses informing prognosis, genetic counselling, and targeted therapies. This includes many diagnostic findings for patients with severe speech disorders, work that has led to mouse models being examined with novel therapies prior to human studies. A major aim of Professor Hildebrand’s research is to understand genetic mechanisms underlying neurodevelopmental disorders including discovery of novel genetic mechanisms for PURA syndrome. He has served on the PURA Foundation Australia Scientific and Clinical Advisory Team since 2024 and was appointed Head of Research in 2025.

Celena Lozano is a 4th year Neuroscience PhD candidate at the University of California, Davis. She received her B.S. in Neurobiology, Physiology and Behavior from UC Davis. She began graduate school studying the role of immune molecules in neurodevelopment and how their dysregulation contributes to neurodevelopmental disorders. After learning of her son’s PURA Syndrome diagnosis, she transitioned to a lab focused on developing gene therapies for rare genetic disorders. Celena is passionate about improving the lives of individuals with neurodevelopmental disabilities by strengthening science communication, education, and advocacy.

Professor Dr. Dierk Niessing has over 25 years of experience in biomedical research and currently serves as research liaison to the PURA Syndrome Foundation. He studied Biology and did his PhD at the Max-Planck-Institute for Biophysical Chemistry (Germany). After research visits at The Rockefeller University (New York City) and SGX Pharmaceuticals INC (San Diego), he became a research group leader at the Helmholtz Zentrum München. Since 2017 he also serves as head of the Institute of Pharmaceutical Biotechnology at the Ulm University (Germany). Both labs, in Munich and Ulm, use structural, biochemical and stem cell-based approaches to understand the molecular underpinnings of the PURA Syndrome.

Kathryn Post DeMott  is a Scientist at the non-for profit company Odylia Therapeutics. She is responsible for overseeing the science of all Odylia programs and is the lead of the Brydge Solutions program. Through the Brydge Solutions program she works with rare disease patient advocacy groups, academics and industry to accelerate drug development timelines, mitigate risks and optimize research investments.

Kathryn received her Bachelors in Neuroscience from Boston University and her PhD in Neuroscience from the University of British Columbia where she studied rare mutations associated with neurodevelopmental disorders. Following her PhD, she did a Post-Doctoral Fellowship at the Center for Rare Childhood Disorders at Translational Genomics in Phoenix, Arizona before joining Odylia as a Scientist. Over the last decade she has gained extensive experience working in the fields of neurodevelopment and neurodegeneration with a focus on genetics.

With 34 years of experience in healthcare policy and advocacy, Michelle Rice is a nationally recognized leader in driving collaborative solutions that enhance patient care and improve healthcare sustainability. As the CEO and Founder of Michelle Rice & Associates, LLC, she leverages her deep expertise to foster consensus among diverse stakeholders, including legislators, state regulators, clinicians, payers, patients, and the pharmaceutical industry.

Michelle is known for her solution-oriented approach, visionary leadership, and ability to cultivate open communication and mutual respect among key stakeholders. She is widely regarded as fair, trustworthy, and authentic, ensuring that all voices are heard in the advocacy and policymaking process.

Among her many accomplishments, Michelle spearheaded the development of a nationally recognized collaborative quality improvement and cost management initiative. This groundbreaking program advances the sustainability of the integrated comprehensive care treatment model for individuals affected by hemophilia and other bleeding disorders, setting a benchmark for innovative and effective healthcare solutions.

Through her work, Michelle continues to champion policies and initiatives that enhance healthcare access, quality, and affordability, making a lasting impact on patients and the broader healthcare landscape.

Rana R. Said, M.D. FAAN is a Professor of Pediatrics and Neurology at the University of Texas Southwestern Medical Center in Dallas, Texas. 

After graduating from the University of Jordan, Faculty of Medicine, in Amman, Jordan, she completed general pediatrics residency and then child neurology residency  at Tufts University, Floating Hospital for Children in Boston, followed by a epilepsy and clinical neurophysiology fellowships at Children’s Hospital Boston, Harvard University.

She was the program director of the Child Neurology Residency program  at UTSW for 20 years,  transitioning out of this role in September 2024, and currently is the Director of Education for the Division of Pediatric Neurology.  She has special expertise in the fields of pediatric epilepsy, infantile spasms, electrical status epilepticus of sleep, epilepsy surgery, status epilepticus and new onset status epilepticus, genetic epilepsies and the ketogenic diet. She is passionate about medical education, curriculum innovation and the recruitment of students into the field of child neurology. She is a sought out mentor across disciplines.

Chris Stafford lives with his family in Denver, Colorado. He and his wife, Megan, are the parents of one girl and two boys, including their 16 year old #PuraPerfect daughter, Lily. He is a devoted dad and partner and enjoys spending time with his family, being outdoors, and household DIY projects. He is active in the local special needs community and enjoys meeting and mentoring families on their own special needs journey. He has a Masters Degree in Organizational Leadership and works in the healthcare industry focusing on team development, technology implementation, project management, and operations.