Ledyard, Connecticut (6/4/2025) —Hope in Focus, a nonprofit dedicated to advancing treatments and cures for blindness caused by the rare inherited retinal disease Leber congenital amaurosis (LCA), is hosting its 2025 LCA Family Conference from June 20 to 21 at the Embassy Suites in Minneapolis, Minnesota. Please see hopeinfocus.org for details.
LCA is a rare inherited retinal disease characterized by severe vision loss at birth. While some children are born with little or no vision, others may have significant vision loss in the first few years of life, stable vision for a period of time, and then eventually complete vision loss as the retina deteriorates into total blindness.
The Hope in Focus LCA Family Conference provides information about advances in research to deepen attendees’ understanding of various stakeholders’ roles in developing treatments. It also allows those living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs) and those involved in developing treatments to learn from each other.
“I am truly honored to be part of the LCA Family Conference this year. Connecting with families, sharing recent advancements, and exploring new opportunities is always inspiring. Most importantly, I cherish these conversations that remind us why our work matters. Behind every development is a true story, a real family, and a real future to look forward to. This is because more than 300 gene defects cause inherited retinal degeneration, and several therapies have been developed. Still, the available clinical trials are barely countable. It’s on us how we remain connected to educate families and identify beneficiaries.” Bikash Pattnaik, Clinical Director of Visual Electrophysiology, UW-Health.
The Hope in Focus LCA Family Conference will provide information about advances in research and treatment development. Speakers include Bikash R. Pattnaik, PhD, founder of Hubble Therapeutics, Michael Scwhartz, Chief Operating Officer at Sepul Bio, Dr. Kenji Fujita, Chief Medical Officer at Atsena Therapeutics, and many others. Research panels will be led by Hope in Focus partner The Foundation Fighting Blindness. Visit hopeinfocus.org for a full list of speakers and an agenda.
“This year’s conference is shaping up to be our biggest yet, with families and individuals joining us from across the United States as well as other countries. The conference is an opportunity for the LCA community to learn about the latest research taking place and engage in purposeful and impactful conversations,” said Hope in Focus Executive Director Courtney Coates. “The more we empower our community, the better we can accelerate treatments. It’s a chance for parents and caregivers to walk away with new knowledge, friendships and hope.”
The LCA Family Conference is made possible by generous sponsors, including The Foundation Fighting Blindness, Atsena Therapeutics, Sepul Bio, Opus Genetics, MeiraGTx and Genentech.
To support the LCA Family Conference Fund which helps keep event costs low for families and provides travel assistance to those in need, please visit www.hopeinfocus.org and click the green “Donate” button. When making your gift, you can designate “LCA Family Conference Support.” All contributions will benefit families attending the conference.
About Hope In Focus
Hope in Focus, formerly Sofia Sees Hope, was founded in 2014 by Laura Manfre and Charles Priebe, whose daughter Sofia has LCA. Hope in Focus’s mission is to transform the lives of those affected by blindness caused by rare inherited retinal disease. The nonprofit organization generates awareness, raises funds for research, and provides outreach, support, and education to those affected by LCA and other rare retinal diseases.