To support Salla disease treatments, research, education, awareness, & family networks  

Sam Taylor

Sam Taylor came to the STAR Foundation as a parent-volunteer. He has two daughters, the younger of which was diagnosed with Free Sialic Acid Storage Disease (FSASD) in 2013. Though he has no professional experience in genomics, Sam hopes to make a difference by bringing his diverse data management background and proactive attitude to the STAR Foundation through management of the patient data registry.
 

Professionally, Sam is the Manager of Data Management at the Army Analytics Group’s Research Facilitation Laboratory, a contract research organization that supports a broad range of studies, research, and analysis efforts, both clinical and non-clinical, across the Department of Defense.
 

In his current role, he directs operational data management activities and oversees an electronic data capture system containing over 3,000 unique clinical and non-clinical data assets, in support of a large portfolio of research projects. He also collaborates closely with patient care providers, researchers, and scientists on a routine basis.

Prior to his work in medical data management, Sam served in the U.S. Army Military Intelligence Corps for ten years, a career that included postings at the National Security Agency and at tactical units across the country. As an intelligence collector, one of his primary roles was the management and organization of intelligence data. Sam employs the same tenacity and work ethic he had in the military to supporting the STAR Foundation’s patient registry data efforts. He looks forward to assisting families and researchers in the furtherance of FSASD research.
 

 

Dr. Steven U. Walkley, DVM, PhD

Steven U. Walkley, DVM, PhD is Professor of Neuroscience, Pathology and Neurology and Director of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center at the Albert Einstein College of Medicine in New York.

 

Dr. Walkley is internationally known for his research on the pathogenesis and treatment of lysosomal diseases. As head of the Sidney Weisner Laboratory of Genetic Neurological Disease he pursues NIH- and private foundation-funded research on Niemann-Pick, Tay-Sachs, Batten and related disorders impacting the function of the lysosomal system.  Of particular focus are disease-induced changes in endocytic, autophagic and salvage pathways and their impact on brain function. Dr. Walkley’s research has also been at the forefront of therapy development for these disorders, including pioneering studies in the use of bone marrow transplantation and substrate reduction therapies. His research led to the only currently approved therapy (by the EMA) for Niemann-Pick type C disease. 

 

Dr. Walkley was co-founder of the Gordon Research Conference on Lysosomal Disease and is an active member of the scientific advisory boards of many lysosomal disease organizations. He is a founding member of the unique scientific research collaborative known as Support of Accelerated Research for NPC disease (SOAR-NPC). 

 

Dr. Walkley received his undergraduate, DVM and PhD degrees at universities in his native state of Alabama (Auburn University and the University of Alabama in Birmingham). He also carried out pre- and post-graduate studies at Auckland University in New Zealand, the University of Edinburgh in Scotland and the Albert Einstein College of Medicine in New York.  He joined the faculty of the Albert Einstein College of Medicine in 1982 and today is a tenured professor. He has published more than 100 research papers in leading scientific journals.

 

Dr. Shih-hsin Kan, PhD

Shih-hsin Kan, PhD is the Scientist II researcher at the CHOC Children’s Research Institute since 2018.  His   research is focus on translational studies on developing treatments for varies lysosomal storage disorders (LSD), including mucopolysaccharidoses (MPS), Pompe and Salla diseases. He has achieved in several different approaches for LSD treatment development, including enzyme replacement therapy (ERT), AAV gene therapy, bone marrow stem cell transplant, induced pluripotent stem cells (iPSC) transplant, CRISPR gene editing in early stage of animal models.

 

​Dr. Shih-hsin Kan received his PhD from Oxford University in Medical Molecular Genetics.  He also completed his post-doctoral T32 fellowship at the UCLA Intercampus Medical Genetics Training Program in 2015.  He has won multiple awards including the Young Investigator Award in WORLD Symposium in 2017.  Before moving to CHOC Children’s Research Institute, he has worked 9+ years in LSD related researches at Lindquist Research Institute (formally LA BioMedical Research Institute).

Dr. Raymond Wang, M.D

Raymond Wang, M.D. is the Director of the Multidisciplinary Lysosomal Storage Disorder Program at CHOC Children’s and a board certified clinical geneticist and biochemical genetics specialist. 

 

As an undergraduate, Dr. Wang attended Stanford University where he was a member of the Phi Beta Kappa honors society and graduated with a bachelor’s degree with Honors and Distinction in Biological Sciences. He earned his medical degree from the University of California, Los Angeles (UCLA) where he was a member of the Alpha Omega Alpha honors society. He completed his internship and residency in medical genetics and pediatrics at Cedars-Sinai Medical Center where he served as chief resident in his final year of training. Dr. Wang completed his fellowship in biochemical genetics at the UCLA Intercampus Medical Genetics Program.

 

In 2006, Dr. Wang received the American College of Medical Genetics and Genzyme Fellowship in Biochemical Genetics Award. In the same year, he also received the Cedars-Sinai Medical Center’s Paul Rubenstein Prize for Excellence in Resident Research.

 

Dr. Wang has been named an Orange County Clinical Biochemical Genetics Physician of Excellence in 2015, 2016, 2017, and 2018. He was nominated for a 2018 Global Genes RAR

Dr. Melissa Wasserstein, M.D. 

Melissa Wasserstein, M.D. is the Chief of the Division of Pediatric Genetic Medicine at the Children’s Hospital at Montefiore and an Associate Professor of Pediatric and Genetics at the Albert Einstein College of Medicine

In addition to diagnosing and managing patients with inborn errors of metabolism, Dr. Wasserstein is a clinical investigator. Her research focuses on expanding newborn screening for rare inherited disorders and evaluating novel, ethical, legal and social implications of newborn screening. She is a Principal Investigator of NYCKidSeq, a multisite program studying the implementation of genomic medicine in underserved populations. She has been the Principal Investigator on numerous clinical trials evaluating novel therapeutics for rare genetic diseases.

Dr. Wasserstein is a Co-Director of the Newborn Screening Translational Research Network’s Steering Committee. She is on the Executive Committee of the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center where she also serves as Associate Director of the Human Clinical Phenotyping Core. She is also on the Scientific Advisory Board of the International Niemann-Pick Disease Association. 

Dr. Wasserstein received her B.S. in biology from Cornell University and her medical degree from New York University School of Medicine. She completed her pediatrics residency and medical genetics fellowship at the Mount Sinai School of Medicine, where she subsequently remained as a faculty member before moving to Einstein-Montefiore in 2016. She has published more than 70 articles and chapters in leading scientific journals.  

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Salla Treatment And Research Foundation | PO Box 115 | Goldens Bridge, NY 10526

©2018 by STAR for Ben