Ready, Set, Go! Hope in Focus 2023 LCA Family Conference Brings Together Rare Retinal Disease Community in Indianapolis

 In Blog

People living with LCA, family members, retinal doctors, researchers, advocates, and representatives of the biotechnology and pharmaceutical industries converge in the racing capital of the world this weekend, when Hope in Focus presents its third LCA Family Conference.

A global advocacy organization helping those affected by blindness, Hope in Focus connects families living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs) through its Family Connections program and through events such as this conference at the Omni Severin Hotel in downtown Indianapolis from Friday, June 23, to Saturday, June 24.

The gathering creates an ideal environment for creating opportunities for thoughtful and interactive exchanges of knowledge, ideas, and viewpoints in sessions focusing on research, future treatments, advocacy, people sharing their stories, and making connections with people traveling similar journeys.

The conference is sponsored by Spark Therapeutics, Foundation Fighting Blindness, MeiraGTx, Janssen, Atsena Therapeutics, Ocugen, and Kiora Pharmaceuticals. We offer special thanks to Eighty Six Media, Indiana School for the Blind and Visually Impaired, Scott D. Allison, OD, MBA, Lori St. Arnaud, and Lee St. Arnaud.

Courtney Coates, Director of Outreach and Development for Hope in Focus, and Laura Manfre, Board Chair and Co-Founder of our organization, kick off the event by sharing the ways in which we are supporting the LCA and rare IRD community.

Our first panel is about Advocating for Treatments, moderated by Jonathan Stokes, AbbVie’s Senior Director of Patient-Centered Outcomes Research. Panelists are:

* Jacose Bell, Senior Patient Advocacy Lead at Spark Therapeutics

* Wiley A. Chambers, MD, Supervisory Medical Officer of New Drugs, Center for Drug Evaluation at the U.S. Food and Drug Administration

* Jill Dolgin, PharmD, Executive Director of Global Patient Advocacy & Scientific Engagement at Beacon Therapeutics

* Laura Manfre, Co-Founder and Board of Directors’ Chair

* Emily Place, MS LCGC, Senior Genetic Counselor and Manager of Genetics and Genetic Counseling at Mass Eye and Ear


A second panel explores Living with LCA, moderated by Lee St. Arnaud, a father of two teen-agers living with LCA. Panelists are:

* Beth Borysewicz, Educational Consultant, State of Connecticut Department of Aging and Disability Services with the Bureau of Education Services for the Blind

* Mohamed Farid, Founder and CEO, MFK Continuity

* Tami Morehouse, LCA research pioneer, who lives with LCA2 RPE65 and volunteered for the first clinical trial for gene therapy

* Patrick St. Arnaud, who lives with LCA17 IQCB1/NPHP5 and is a high school senior

* Mirielle St. Arnaud, who lives with LCA17 IQCB1/NPHP5 and is a high school junior


A session will be held on LCA Drug Development by our partners at the Foundation Fighting Blindness. The speakers are Chad R. Jackson, PhD, Senior Director of the Foundation’s Preclinical Translational Research Program, and Ben Shaberman, Foundation Vice President of Science Communications.


Another panel will discuss Gene Agnostic Therapies, moderated by Chad R. Jackson, PhD, with panelists:

* Huma Qamar, MD, MPH, CMI, Head of Clinical Development and Medical Affairs at Ocugen

* Eric Daniels, MD, Chief Development Officer at Kiora Pharmaceuticals

* Ben Shaberman, Vice President of Science Communications at Foundation Fighting Blindness


The last panel will discuss Gene Therapies for LCA, moderated by Ben Shaberman of the Foundation. Panelists are:

*Shannon E. Boye, Founder and Director and Acting Chief Science Officer at Atsena Therapeutics

* Ash Jayagopal, PhD, Chief Scientific Officer, Opus Genetics

* Thomas Mendel, MD, PhD, Assistant Professor of Ophthalmology, and Vitreoretinal Surgeon, Havener Eye Institute, Department of Ophthalmology & Visual Sciences of The Ohio State University

* Bikash R. Pattnaik, PhD, Professor, University of Wisconsin-Madison


Hope in Focus is dedicated to generating awareness, raising funds for research, and providing support, education, and outreach to the LCA and rare inherited retinal disease community.

We look forward to seeing you at our LCA Family Conference!




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