Meet Our Speakers

Lauren Dengle Sanchez, MD 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 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.