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
Sebastian  Honoré | Co-founder
MSc in Economics with specialty in finance. Turned rare disease advocate, spearheading the mission to cure Lowe syndrome. Leads overall strategy, operations, and fundraising.

Cecilie Bech Hammer | Co-founder
Cecilie is a nurse by training and an advocate for improved treatments for Lowe syndrome. She navigates complex medical plans and specialist networks while actively supporting other Lowe syndrome families. In addition to her hands-on role, she leads communication and public relations efforts to raise awareness and drive progress in rare disease treatments.

Our Scientific Advisory Board


Dr. Xavier Anguela, PhD
Dr. Anguela is the former EU Chief Scientific Officer at AskBio (acquired by Bayer) and currently serves as CSO at Nava Therapeutics. He is also a co-founder of Estuary Biotherapeutics. A recipient of the Outstanding New Investigator Award (ASGCT), Dr. Anguela leads research plan development and provides both in vitro and in vivo study guidance.



Dr. Federico Mingozzi, PhD
Dr. Mingozzi, is the Chief Executive Officer of Nava Therapeutics and a pioneer in gene therapy development, including Luxturna. With a career dedicated to advancing safe and effective gene-based treatments, his research has focused on AAV vector interactions with the immune system and the clinical translation of gene therapies.



DR. Leopoldo Staiano, PhD
Dr. Staiano is Assistant Investigator at Telethon Institute of Genetics and Medicine (TIGEM). Over 12 years of research experience in Lowe syndrome and rare kidney diseases. Leads R&D strategy and scientific operations, pioneering kidney organoid platform development. Leads preclinical studies.
 

Dr. Yang Sun, MD, PhD
Dr.  Sun 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.




Dr. Alan C. Pao, MD, PhD
Dr. Pao is an Associate Professor of Medicine at Stanford University with extensive expertise in nephrology and urology. His research focuses on advancing innovative therapies for kidney disease, with an emphasis on improving patient outcomes through novel treatment strategies and translational medicine.



Dr. Siyu Chen, PhD

Dr. 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.




Our Advisors


Henrik Møgelmose
Henrik is a partner with the law firm Kromann Reumert, Copenhagen, focusing on M&A and capital markets. Henrik has advised on numerous transactions within healthcare and life science. He further holds various chairman positions in Danish companies, including such as Parken Sport & Entertainment, F.C. København, Lalandia, JENSEN Invest, B.J. Holding Middelfart and Fryco (the former owner of the medico company Ferrosan). Henrik is also an advisory board member with Network Nation and Kvinder i Fodbold.



Sibel Karina Arnes
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
Katie is Vice President of Regulatory Affairs at Akouos, a subsidiary of Eli Lilly focused on hearing loss therapies. She has extensive regulatory experience in AAV programs for hemophilia and retinal diseases, including Beqvez and Luxturna.




Terry Pirovolakis
Terry is the CEO of Elpida Therapeutics and a leading advocate for rare disease treatments. Driven by his son Michael’s diagnosis with spastic paraplegia type 50 (SPG50), he led the development of a pioneering gene therapy for the condition, bringing together global research institutions to advance the treatment. His work secured regulatory approval from Health Canada, marking a milestone in rare disease drug development.


Charlotte Møller
Charlotte is a professional board member and former Director of Toldstyrelsen, drawing on extensive leadership experience in Denmark’s financial sector. She has had senior roles at Finanstilsynet, Industriens Pension, Sampension, and PFA Pension, where she ultimately served as Director.