Who we are
The Cure Lowe Foundation brings together a world-class team of scientists, industry experts, and patient advocates.
Combined our trusted experts have developed several gene therapies and brings decades of research in Lowe Syndrome.
Parents & Founders
Economist turned rare disease advocate, spearheading the mission to cure Lowe syndrome for his son Walther and children worldwide.
Nurse by trade juggling care plans and specialists while championing improved treatments for her son Walther and fellow Lowe syndrome families.
Our Scientific Advisory Board
Dr. Yang Sun, MD, PhD
Dr. Yang Sun, MD, PhD, is Professor of Ophthalmology at Stanford University School of Medicine and our Scientific Co-Founder. With over a decade of dedicated research in Lowe syndrome, Dr. Sun bridges the gap between laboratory discoveries and patient care, using cutting-edge technologies including patient-derived iPS cells, CRISPR gene editing, and functional retinal imaging to develop new treatments.
Former chief science and technology officer at Spark Therapeutics, Inc., is a pioneer in gene therapy having led the development of Luxturna. Now CEO at Nava Therapeutics, a non-viral gene therapy company.
Dr. Siyu Chen, PhD
Dr. Siyu Chen is a Postdoc at Stanford University, specializing in cutting-edge gene editing techniques. Her research is focused on the development of novel methods in gene therapy, aimed at addressing and potentially curing a wide array of genetic disorders. She has specifically worked on advancing treatments for conditions such as Lowe Syndrome and Glaucoma, etc.
Associate Professor of Medicine at Stanford University, has extensive expertise in nephrology and urology. His work focuses on advancing therapies for kidneys
Pioneering kidney gene therapies with over 20 years of experience in both academia and industry. He played a pivotal role in the development of Beqvez, Pfizer’s approved gene therapy for hemophilia B. Now a CSO and Co-founder of Estuary Biotherapeutics.
Our Advisors
Sibel is an Investment Professional at Adelis Equity, where she focuses on Healthcare & Life Sciences investments. She brings extensive experience in global healthcare investing, having previously served as a Principal at Novo Holdings. Her board experience spans multiple continents, including positions at BBI Solutions (UK), Tempus Labs (US), Mission Bio (US), and currently SSI Diagnostica (DK).
Katie Wachtel, VP of Regulatory Affairs at Akouos a subsidiary of Eli Lilly focused on hearing loss therapies. Her experience includes AAV programs for hemophilia and retinal diseases, such as Beqvez and Luxturna
Terry Pirovolakis is the CEO of Elpida Therapeutics and a prominent rare disease advocate. After his son Michael was diagnosed with SPG50, a rare neurodegenerative disorder, Pirovolakis spearheaded the development of a groundbreaking gene therapy treatment that received Health Canada approval. He now leads efforts to transform rare disease treatment approaches while educating other families through free gene therapy courses.