RHO Day Webinar

This session brings together clinical experts, genetic specialists, and biotech pioneers to explore Rhodopsin mediated autosomal dominant retinitis pigmentosa.

Key Topics

• Disease progression & the patient journey
• Genetic testing & autosomal-dominant inheritance
• Clinical trial participation & patient resources
• Emerging industry research pipelines
• Live audience Q&A

Featured Speakers

Jason Comander, MD, PhD (Director, Inherited Retinal Disorders Service, Mass Eye & Ear) – RHO disease overview

Dr. Jason Comander is an ophthalmologist at Massachusetts Eye and Ear in Boston who specializes in the diagnosis and care of patients with inherited retinal diseases, including retinitis pigmentosa. He is an Associate Professor of Ophthalmology at Harvard Medical School, and an investigator in the Mass Eye and Ear Ocular Genomics Institute and the Berman-Gund Laboratory for the Study of Retinal Degenerations. He directs the Inherited Retinal Disorders Service at Mass Eye and Ear, serving as an investigator and surgeon in many clinical trials for RP. His laboratory focuses on improving genetic testing for RP, and has focused specifically on the rhodopsin gene for more than a decade.

Kari Branham, MS, CGC (Director of Ophthalmic Genetic Counseling, Kellogg Eye Center, Univ. of Michigan) – Genetics & testing

Kari Branham, MS, CGC is a Clinical Associate Professor of Ophthalmology and Human Genetics, Director of Ophthalmic Genetic Counseling at the Kellogg Eye Center, and Assistant Director of the University of Michigan Genetic Counseling Training Program. She received her master’s degree in Genetic Counseling from the University of Michigan in 2002 and has over twenty-four years of experience as an ophthalmic genetic counselor at Michigan Medicine. She sees patients affected with inherited retinal disease, neuro-ophthalmic conditions, and other genetic eye diseases. She serves as the patient coordinator for those receiving the gene therapy treatment at the Kellogg Eye Center and is a co-investigator on several different clinical treatment trials at Kellogg.  Her own research focuses on understanding more about the genetic basis for disease in patients affected with inherited retinal degenerations. She serves on the Scientific Advisory Board for the Foundation Fighting Blindness (FFB) and is Chair of the FFB Clinical Consortium Genetics Review Committee.  

Mary & Lara Findlay – RHO-adRP family perspective

Mary (64) and Lara Findlay (36) are a mother and daughter from Dundee, Scotland who both have AD RHO RP, inherited from Mary’s side of the family. Three of Mary’s four children have RP. Mary was diagnosed when she was 4 years old, but her diagnosis wasn’t shared with her until the age of 18. Lara was diagnosed at age 7, and her diagnosis was shared with her at age 9. Their gene mutation appears to progress slowly, although it varies in severity amongst members of the extended family, including 2 of Mary’s 4 siblings. Mary (who retired at 62) has had a successful career as a civil servant, English Teacher, Special Educational Needs Teacher and University Tutor. Mary enjoys reading, art and gardening.

Lara works in Scotland’s technology sector, supporting people who are starting and growing businesses, having previously co-founded a software company. Outside work, she enjoys playing Scottish fiddle, travelling and volunteering with local community events. Mother and daughter have been diagnosed and monitored by the UK National Health Service, with Mary receiving cataract surgery in her 40s. Both have received accessibility support.

Julie Bayer-Vile (Clinical Research Lead), Foundation Fighting Blindness

Julie Bayer-Vile is a genetic counselor and Clinical Research Lead for Foundation Fighting Blindness. She has over five years experience as a clinical genetic counselor, including as an ophthalmology genetic counselor. She manages the day-to-day operations of the My Retina Tracker Registry and Genetic Testing Program.

Alicia Kemble, PhD (Principal, Gund Vision Fund) – Moderator

Alicia Kemble, Ph.D., is a Principal at the Gund Vision Fund, the venture philanthropy arm of the Foundation Fighting Blindness, where she leads the evaluation of new investment opportunities in retinal therapeutics. Her background spans neuroscience research and pharmaceutical drug development, prior to joining the fund. Her expertise and interests include evaluating emerging therapies, assessing their scientific and clinical potential, and working with entrepreneurs to advance promising treatments for retinal degenerative diseases. Alicia is passionate about funding translational scientific discoveries into treatments that improve the lives of people affected by vision loss and their families.

Industry Pipeline Presenters

Matthew Albert, MD, PhD – VP, Early Clinical Development, Octant

Matthew Albert is a physician scientist and brings decades of expertise to the fight against inherited retinal diseases, with a career focused on precision medicine and human genetics. His work spans multiple therapeutic areas including: immunology, metabolic disorders and neurodegeneration. At Octant, he leads efforts to translate cutting-edge discoveries into therapies that address unmet medical needs in rare diseases like autosomal dominant retinitis pigmentosa (adRP) and Fabry Disease.

Before joining Octant, Matthew served as Chief Translational Officer at Human Immunology Biosciences and Senior Vice President at insitro, where he directed the Department of Translational Genetics and Biology. At Genentech, he founded and led the Reverse Translation Organization within the Cancer Immunology Department, leading efforts to bridge clinical insights back into drug discovery. He also served as Director of the Immunology Department at the Institut Pasteur in Paris, where he co-founded the Milieu Intérieur Consortium, a global initiative to uncover the genetic, microbiome and environmental determinants of health and disease.

Matthew’s work resulted in the discovery of multiple drug targets and advancement of numerous therapies into clinical trials and clinical practice. His foundational research provided definitive evidence that human tumor immunity is driven by the cross-priming of antigen-specific cytotoxic T cells (CD8+), laying the groundwork for modern immuno-oncology treatments.

Matthew holds an M.D. from Weill Cornell Medical College, a Ph.D. in Immunology from Rockefeller University, and completed his residency in Clinical Pathology at New York Presbyterian Hospital. He is committed to translating scientific breakthroughs into real-world impact, working with patient communities to ensure that innovative therapies address their needs and improve their lives.

Sally Tucker, PhD – Chief Medical Officer, Opus Genetics

Sally Tucker, Ph.D., is the chief medical officer at Opus Genetics and an independent prescribing optometrist with a Ph.D. in ophthalmology and a master’s in business management. Sally joined the ophthalmology industry in 2003, with her career spanning sales and marketing, training, medical affairs, and clinical. Her expertise and special interests include all phases of clinical research activities — from first-in-human and FDA investigational studies to numerous post-marketing evaluations — as well as developing relationships with international sites and KOLs.

Sally is a passionate patient advocate who is driven to bring ground-breaking treatments to those that need it the most, the patients and their families.

Kali Stasi, MD, PhD – Chief Medical Officer, SparingVision

Kali Stasi, M.D., Ph.D., is an ophthalmologist and physician-scientist with extensive experience in ophthalmology and clinical development of gene and cell therapies. She currently serves as Chief Medical Officer at SparingVision, where she leads clinical strategy and development for the company’s gene therapy programs aimed at preserving and restoring visual function in patients with inherited retinal diseases. Kali holds an M.D. and Ph.D. in neurodegenerative diseases from the University of Patras School of Medicine and trained at leading academic institutions in the U.S., including Mass Eye & Ear, Johns Hopkins University, the University of Rochester NY and Mount Sinai NY. Prior to joining SparingVision, she held senior leadership roles at Novartis and biotechnology companies including Adverum Biotechnologies and Tenpoint Therapeutics, and previously served as Assistant Professor at the University of Pennsylvania’s Scheie Eye Institute.

Beth Scott, OD, MS – VP, Clinical Development, Ocugen

Dr. Beth Scott brings more than three decades in ophthalmology, including 18 years in industry, with a career spanning Regulatory Affairs, Medical Affairs, Clinical Development, Clinical Operations, and Pharmacovigilance for both Clinical Phase and Post Approval commercial companies. At Bayer HealthCare, she led neovascular nAMD for medical on a global rollout of EYLEA (aflibercept) across 56 countries and drove the post-approval PASS/PAES/registry programs for nAMD, DME, CRVO, and myopic CNV. At Alcon, she served as Global Regulatory and Medical Affairs Lead, running Phase 3 and Phase 4 programs while managing submissions and registrations across international jurisdictions. She has also advanced science for mid-sized & small biotech organizations including Shire, Aerie, Eyenovia, Horizon, Dompe, and Ocugen. Beth delivers innovation, especially to rare diseases in areas of greatest unmet need to improve patient outcomes and experience. 

Emily Brown, PhD – Associate Director, Clinical Development, Ophthalmology, BlueRock Therapeutics

Emily Brown, PhD, is Associate Director of Clinical Sciences at BlueRock Therapeutics, where she helps lead the development of new cell therapies for inherited retinal diseases and other vision-threatening conditions. She has more than 12 years of experience in retinal research, working to translate scientific discoveries into potential treatments for patients. Before joining BlueRock, Emily spent many years studying inherited retinal diseases and helping advance research aimed at developing new treatments for people affected by these conditions. Her work included research at Harvard Medical School/ Massachusetts Eye and Ear. She is passionate about partnering with patients, families, researchers, and clinicians to advance innovative therapies and improve the lives of people affected by retinal disease.

Register to receive your meeting link and connect with the global community. All registrants receive session recordings and materials post-event. For questions, contact Grace Warner at GraceWarner@GundVisionFund.org