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Leadership

CURE4/6 is led by an affected families alongside the clinicians and scientists who helped uncover RNU4-2 and RNU6 retinal disease.

Directors & Officers

  • Esther Herz, President and Chairman of CURE4/6

    Esther Herz

    President & Director

    Esther Herz

    President & Director

    See Esther's story on Home page

  • Allan Jacob, MD, Vice President and Director of CURE4/6

    Allan I. Jacob, MD

    Vice President & Director

    Allan I. Jacob, MD

    Vice President & Director

    Dr. Allan Jacob is a physician-scientist, entrepreneur, and patient advocate whose work spans medicine, biomedical research, and rare genetic disease. A graduate of Yeshiva University and Albert Einstein College of Medicine, he trained in Internal Medicine and Nephrology at University of Miami and has spent more than four decades in clinical practice, research, and healthcare innovation. He has authored numerous scientific publications and has served as founder and leader of several healthcare organizations. Motivated by families affected by inherited retinal disease, Dr. Jacob became actively involved in the search for the genetic causes of retinitis pigmentosa (RP). He was a collaborator and co-author on the landmark 2026 study that identified disease-causing variants in RNU4-2 and RNU6 genes as a cause of autosomal dominant RP, helping establish a new class of spliceosomal RNA disorders in retinal degeneration. As a founder of CURE4/6, Dr. Jacob is committed to accelerating research, building patient registries, supporting affected families, and advancing the development of treatments and cures for retinitis pigmentosa caused by variants in RNU4-2 and RNU6.

  • Steven Jeger, Director & Officer of CURE46

    Steven Jeger

    Director

    Steven Jeger

    Director

    Steven brings over 25 years of experience across multiple healthcare verticals, with a track record of building and operating multi-state healthcare companies. Throughout his career, he has led teams spanning operations, revenue cycle management, finance, and IT. Steven joins this board committed to applying that breadth of experience in support of the organization's mission.

  • Sarah Anton, Secretary of CURE46

    Sarah Anton

    Secretary

    Sarah Anton

    Secretary

    Over the past several years, Sarah Anton has built her career in healthcare operations, working behind the scenes to keep things running smoothly so healthcare teams can focus on their patients. Combining her MBA with a compassionate, people-first approach, she enjoys finding practical solutions, improving processes, and supporting those around her.

    As Secretary of Cure 4/6, Sarah is grateful to use those same skills to help support the organization's mission and the community it serves.

  • Syril Salzman, Treasurer of CURE46

    Syril Salzman

    Treasurer

    Syril Salzman

    Treasurer

    Syril Salzman has a background in accounting and financial management and brings valuable expertise to her leadership and volunteer roles. She is dedicated to community involvement and is passionate about supporting organizations that create positive change. Her professionalism, integrity, and commitment to service make her a valued member of the board.

  • Dylan Costo, Bioinformatics Manager at CURE46

    Dylan Costo

    Bioinformatics Manager

    Dylan Costo

    Bioinformatics Manager

    Molecular scientist specializing in clinical genomics, bioinformatics, and computational biology, with a passion for developing innovative tools and strategies that advance genomic research.

Scientific & Medical Advisory Board

  • Susanne Roosing, PhD, Scientific & Medical Advisory Board member of CURE46

    Susanne Roosing, PhD

    Susanne Roosing, PhD

    Susanne Roosing is a molecular geneticist whose research focuses on inherited retinal disease gene discovery. Her team works to uncover the genetic causes that remain hidden in many patients with inherited retinal disease.

    Her work has repeatedly pushed the boundaries of where these causes are found. She was a lead researcher on the landmark identification of the genetic basis of retinitis pigmentosa type 17 (RP17) — the culmination of a more-than-30-year search — which showed that structural rearrangements of DNA can drive dominant retinitis pigmentosa by altering how the genome folds. More recently, her group has helped establish that variants in non-coding genes, long overlooked in inherited retinal disease, can themselves cause blindness.

    Dr. Roosing's research is deeply collaborative, drawing on international consortia and data-sharing networks to find the additional families that turn a candidate gene into a confirmed cause. That model of careful gene discovery paired with broad collaboration directly benefits patients and families through improved diagnosis, more accurate prognostic and recurrence-risk information, and the foundation for future therapies. She is a valued research collaborator of CURE46.

  • Carlo Rivolta, PhD, Scientific & Medical Advisory Board member of CURE4/6

    Carlo Rivolta, PhD

    Carlo Rivolta, PhD

    Molecular geneticist and Professor of Ophthalmic Genetics at the University of Basel, leading the Ophthalmic Genetics Group at the Institute of Molecular and Clinical Ophthalmology Basel (IOB). He also holds a professorship in Medical Genetics at the University of Leicester and heads the European Retinal Disease Consortium Executive Committee. A pioneer in applying next-generation sequencing to medical genetics, his team contributed to the discovery of 15 of the 19 hereditary retinopathy genes identified in 2024–2026, including the noncoding RNA genes RNU4 and RNU6 linked to dominant retinitis pigmentosa. He has authored 170 peer-reviewed publications with roughly 20,000 citations.

  • Dror Sharon, PhD, Scientific & Medical Advisory Board member of CURE4/6

    Dror Sharon, PhD

    Dror Sharon, PhD

    Professor of Experimental Ophthalmology at the Hebrew University of Jerusalem and Head of the Molecular Ophthalmology Laboratory at Hadassah Medical Center, where he has led research on the genetics of inherited retinal diseases in Israeli and Palestinian populations since 2003. Trained at the Weizmann Institute and Harvard Medical School under retinal-genetics pioneer Thaddeus P. Dryja, he has, together with Prof. Eyal Banin, recruited over 2,300 families with inherited retinal diseases and identified FAM161A as the most common cause of inherited retinal degeneration in the Israeli population, along with 15 additional novel disease genes. His group develops gene-augmentation, readthrough, and RNA-editing therapies for IRDs, and he has authored more than 130 peer-reviewed publications.

  • Eyal Banin, MD, PhD, Scientific & Medical Advisory Board member of CURE46

    Eyal Banin, MD, PhD

    Eyal Banin, MD, PhD

    Eyal Banin, MD, PhD, is Professor of Ophthalmology at Hadassah-Hebrew University Medical Center in Jerusalem and Director of the Hadassah Center for Retinal and Macular Degenerations. He is a graduate of the Hebrew University-Hadassah School of Medicine, where he also completed a PhD in Neurobiology, followed by ophthalmology residency at Hadassah and a combined medical retina and IRD fellowship at the Scheie Eye Institute, University of Pennsylvania. As a clinician-researcher, his work focuses on inherited and age-related retinal and macular degenerations, combining molecular, genetic, and clinical approaches to advance the understanding of these diseases and explore new therapeutic strategies. Over the past two decades, he has contributed to translational efforts including cell- and gene-based therapies evaluated in early-phase clinical studies. The recipient of many research grants from Israeli and foreign institutions, Dr. Banin has authored over 200 peer-reviewed articles in leading medical journals.

  • Mathieu Quinodoz, PhD, Scientific & Medical Advisory Board member of CURE4/6

    Mathieu Quinodoz, PhD

    Mathieu Quinodoz, PhD

    Senior Scientist in the Ophthalmic Genetics Group at the Institute of Molecular and Clinical Ophthalmology Basel (IOB), focusing on the genetic architecture of inherited retinal diseases. He made the initial discovery that dominant variants in the U4 and U6 small nuclear RNA genes cause retinitis pigmentosa, and has developed widely used bioinformatic tools including DOMINO, AutoMap, MutScore, and OFF-PEAK, as well as RetiGene, a comprehensive gene atlas for inherited retinal diseases. He has authored more than 60 peer-reviewed publications.

  • Rob W.J. Collin, PhD, Scientific & Medical Advisory Board member of CURE46

    Rob W.J. Collin, PhD

    Rob W.J. Collin, PhD

    Rob Collin is a molecular geneticist whose research group at Radboudumc focuses on developing and implementing novel molecular therapies for inherited retinal diseases (IRDs). Where much of the field works to identify the genetic causes of blindness, Collin's group concentrates on the next step: correcting them. His central focus is the modulation of pre-mRNA splicing — designing antisense oligonucleotide and gene-augmentation strategies to repair the consequences of disease-causing variants in selected forms of IRD.

    Trained in chemistry and originally a doctoral researcher in the protein biology of Alzheimer's disease, Collin joined Radboudumc in 2006 and was part of the team that discovered several genes underlying hereditary hearing loss and inherited blindness. After a period developing gene therapy in the United States, he shifted his own program toward molecular therapeutics in 2010, and was appointed Full Professor at Radboudumc and Radboud University in 2021. His group's earlier work — restoring a specific RNA splicing defect that causes a common form of congenital blindness — has since advanced into patient testing, and his research employs a range of cellular models (patient fibroblasts and iPSC-derived retinal cells and organoids) alongside zebrafish and mouse systems.

    Collin coordinates international consortia developing genetic therapies for IRDs and has helped translate laboratory discoveries toward the clinic. He is the founder of Astherna B.V., a Radboudumc spin-out company developing RNA-based therapies — particularly antisense oligonucleotide splice-modulation treatments — to fight inherited forms of blindness. Astherna has licensed intellectual property from Radboudumc on which Collin is an inventor, carrying his laboratory's splice-correction work toward therapeutic development. That bridge between fundamental discovery and treatable targets makes him a valued therapeutic-development collaborator of CURE46.

  • Winston Lee, PhD, Scientific & Medical Advisory Board member of CURE46

    Winston Lee, PhD

    Winston Lee, PhD

    Dr. Winston Lee is an Assistant Professor of Ophthalmology at the Bascom Palmer Eye Institute, University of Miami Miller School of Medicine. His research focuses on the genetics of inherited retinal diseases, including gene discovery, variant interpretation, retinal disease phenotyping, and the development of precision-medicine approaches for patients and families affected by retinal degeneration.

    Before joining Bascom Palmer, Dr. Lee conducted research at Columbia University in inherited retinal disease genetics, where he worked on applying genomic and phenotypic data to identify disease-causing variants and improve diagnosis for rare retinal disorders. His work aligns closely with the mission of CURE4/6: accelerating discovery, diagnosis, and therapeutic development for retinitis pigmentosa caused by variants in RNU4-2 and RNU6.