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Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease.

 

JANUARY 27, 2021 - 1:00pm ET

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Ben Shaberman

Senior Director, Scientific Outreach & Community Engagement

Foundation Fighting Blindness

Let’s Chat About … What’s in the therapy pipeline for Leber congenital amaurosis.

For 16 years, Ben has been reporting on retinal research for all of FFB’s electronic and print publications. In addition, he presents the latest scientific advancements at local and national events for patients and families, and conducts various training activities for staff and constituents. He enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them. Ben also leads the company’s outreach to eye care professionals throughout the United States.

Ben has written three books – Retina Boy, Jerry’s Vegan Women, and The Vegan Monologues – all published by Loyola University (Maryland). He earned a Master of Arts in writing from Johns Hopkins University, a Master of Science in systems management from the University of Maryland, and a Bachelor of Science in computer information science from Cleveland State University.

FEBRUARY 16, 2021 - 3:00pm ET

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Wiley A. Chambers, MD

Supervisory Medical Officer

Office of New Drugs, Center for Drug Evaluation and Research

Food and Drug Administration (FDA)

Let’s Chat About … What it takes to receive approval for a new treatment for rare disease.

Wiley A. Chambers, MD, is a Supervisory Medical Officer in the Office of New Drugs, Center for Drug Evaluation and Research at the Food and Drug Administration (FDA). After receiving an undergraduate degree from Colgate University, Dr. Chambers completed medical school and a residency in Ophthalmology at The George Washington University School of Medicine and Health Sciences in Washington, DC. He is currently a Clinical Professor of Ophthalmology and Adjunct Assistant Professor of Computer Medicine at The George Washington University. He joined the FDA in 1987, as a primary reviewer for ophthalmic drug products and in 1990 became a Supervisory Medical Officer for Ophthalmologic Drug Products. In this capacity, Dr. Chambers has supervisory responsibility for the clinical review of ophthalmologic drug products and ophthalmic therapeutic biologic products submitted to the Center for Drug Evaluation and Research. Additionally, Dr. Chambers is the recepient of numerous Public Health Service, FDA and Center for Drug Evaluation and Research awards for his work with the FDA and he has served as the American Academy of Ophthalmology’s Delegate to past United States Pharmacopeia Conventions.

MARCH 15, 2021 - 1:00pm ET

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Emily Place

Licensed Genetic Counselor and Research Study Coordinator

Massachusetts Eye and Ear

Let’s Chat About … The ins and outs of genetic testing.

 

Emily graduated from the University of St. Thomas with a Bachelor of Arts in Biology. She went on to earn her master’s degree in Human Genetics from Sarah Lawrence College. Prior to working at the Ocular Genomics Institute, she worked as a pediatric genetic counselor at The Children’s Hospital of Philadelphia.


Emily joined the OGI in 2011, where she provides risk assessment and genetic counseling services to families with inherited retinal dystrophies. She also serves as the study coordinator for the research study of molecular genetics of inherited retinal dystrophies.

Sofia Sees Hope is a 501c(3) nonprofit global patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by rare inherited retinal diseases. Our mission is to generate awareness, raise funds for research, and provide outreach, support and education to those affected by LCA and other rare retinal diseases.

Leber congenital amaurosis (LCA)  is a rare inherited retinal disease (IRD) that causes the degeneration of the cone and rod cells in the retina. It is characterized by severe vision loss at birth and results in complete blindness. As a rare disease that is not widely known or understood, LCA can often create feelings of isolation, frustration and helplessness.

All families affected by LCA can benefit from opportunities to connect and share information with other families, medical specialists and advocacy groups. A vital element of the Sofia Sees Hope mission is to provide more opportunities for all people affected by LCA to connect and provide mutual support and information. For more information about Sofia Sees Hope visit our website.

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