Hope in Focus to Host LCA Family Conference June 23-24

Don't miss this opportunity to connect with other individuals and families living with LCA

INDIANAPOLIS, June 15, 2023 /PRNewswire/ -- Hope in Focus, a nonprofit dedicated to finding treatments and cures for blindness caused by rare inherited retinal diseases, presents its 2023 LCA Family Conference from June 23-24 at the Omni Severin Hotel Indianapolis. Please see hopeinfocus.org for details.

The conference offers an extraordinary opportunity to engage in a robust and interactive exchange of knowledge, ideas, and viewpoints, while making new connections in the Leber congenital amaurosis (LCA) and rare inherited retinal disease (IRD) community. 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.

"It has been too long since we last gathered in person as an LCA community," said Laura Manfre, Hope in Focus co-founder, and board member of the Foundation Fighting Blindness. "I am very much looking forward to this year's conference, where individuals living with LCA and their families can share their experiences and learn about advances in research. Just as important, is the opportunity this conference presents for researchers, clinicians, and regulatory and industry members of our IRD space to hear first hand what it's like to live with vision loss and to hear what questions and concerns we have. There aren't enough opportunities for all sides of our rare disease ecosystem to come together and learn from one another, and I'm very happy Hope in Focus is able to make this possible with our conference."

The LCA Family Conference brings together families and researchers from across the United States and beyond.  Attendees will learn the latest advances in research, deepen their understanding of the roles various organizations play in developing treatments, and gain insight into ways an active patient community can support and accelerate treatment. Shannon Boye, the founder of Atsena Therapeutics, Wiley Chambers from the Office of Specialty Medicine – Division of Ophthalmology at the Federal Drug Administration and many other researchers will be among the speakers. Research panels will be led by Hope in Focus partner, Foundation Fighting Blindness. Visit hopeinfocus.org for a full list of speakers and an agenda.

"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 Director of Outreach and Development 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."

Hope in Focus knows that travel can be expensive, so for those who may need some financial assistance to attend, please contact us to see how we can help.

The LCA Family Conference is made possible with the support of our generous sponsors including Spark Therapeutics, Foundation Fighting Blindness, Atsena Therapeutics, Kiora Pharmaceuticals, Janssen, and MeiraGTx. 

If you would like to support the LCA Family Conference Travel Assistance Fund, please visit our website at www.hopeinfocus.org and click on the green "Donate" button. When making your gift you can designate "LCA Family Conference Support." All proceeds will directly benefit families in need to attend the conference.

About Hope In Focus 
Hope in Focus, formerly known as Sofia Sees Hope, was founded in 2014 by Laura Manfre and Charles Priebe, whose daughter Sofia has LCA. This rare genetic retinal condition is characterized by blindness or severe vision loss at birth that leads to total blindness.

The mission of Hope in Focus 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.

CONTACT:
Courtney Coates
Director of Outreach and Development
[email protected]
860-266-6062

SOURCE Hope in Focus