Sofia Sees Hope Co-founder Named Foundation Fighting Blindness National Trustee
Sofia Sees Hope is a 501(c)(3) nonprofit founded in 2014 that supports people with Leber congenital amaurosis (LCA). This rare genetic retinal condition is characterized by severe vision loss at birth and leads to total blindness.
The Foundation’s National Trustee organization “is focused on building sustainable development and fundraising capacity for the Foundation Fighting Blindness throughout the country,” according to the Foundation. “A Trustee plays a crucial role in helping the Foundation achieve its objectives and it is important that Trustees understand their roles and responsibilities. The primary responsibilities of the Trustees include providing leadership in events, giving and raising money and serving as spokespersons and ambassadors for the Foundation.”
“We are delighted and privileged to have Laura join the Foundation’s leadership team,” said Benjamin Yerxa, PhD, chief executive officer at the Foundation. “She brings extensive knowledge and experience, as a nonprofit executive and as a parent, to our mission. Furthermore, Laura is extraordinarily passionate about the drive for preventions, treatments and cures.”
Since its inception, Sofia Sees Hope has worked closely with the Foundation. In December 2018, SSH provided $100,000 to support research into restoring vision for patients diagnosed with LCA. The donation was made to Foundation Fighting Blindness, which funneled it to three researchers selected by the SSH Board of Directors, and to the Foundation’s own program called My Retina Tracker. The $25,000 donation to support free genetic testing through My Retina Tracker brings SSH’s total support of that program to $105,000 since 2016.
“From the moment of our founding, we’ve made it a point to focus on how we can leverage the great work of other organizations, and differentiate our service by filling very specific needs within our rare disease community,” Manfre said. “Foundation Fighting Blindness is an established organization doing excellent work to advance research for all retinal disease, working with agencies, researchers and industry globally. They have been great partners with us, lending their global expertise in research, so we can focus on the specific needs of our rare retinal disease community, empowering them through outreach, education and connecting individuals. I am so honored to be invited to become a National Trustee.”
About Sofia Sees Hope
Sofia Sees Hope was founded in 2014 by Laura Manfre and Charles Priebe, whose daughter Sofia has Leber congenital amaurosis (LCA). This rare genetic retinal condition is characterized by severe vision loss at birth and leads to total blindness.
The mission of Sofia Sees Hope is to transform the lives of those affected by blindness caused by rare inherited eye 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.
About Foundation Fighting Blindness
Established in 1971, the Foundation Fighting Blindness is the world’s leading private funding source for retinal degenerative disease research. The Foundation has raised more than $750 million toward its mission of preventing, treating, and curing blindness caused by the entire spectrum of retinal degenerative diseases including: retinitis pigmentosa, age-related macular degeneration, Usher syndrome, and Stargardt disease. Visit www.FightingBlindness.org for more information.