Sofia Sees Hope Expands Board of Directors
Ledyard, CT (Dec. 4, 2017) — Sofia Sees Hope, a Ledyard, CT-based patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by Leber congenital amaurosis (LCA) and other rare inherited retinal diseases, has expanded its Board of Directors.
Three new positions were added to the Board in November. Laura Manfre, co-founder of the nonprofit and chair of the Board, said the expansion was needed because the organization has grown so quickly.
“In just three years since we began, advances in research have continued at a rapid pace, and with it so has demand from the LCA community for more information and support,” Manfre said. “Today, we’re receiving requests from all corners of the globe and working hard to keep pace with the needs of our community. Expanding our board of directors is an obvious next step, and I’m grateful to our three new Directors for volunteering their time and skills. They are joining a team of dedicated local volunteers who have helped this organization grow from a small startup nonprofit to what is rapidly turning into global rare disease organization.”
Coming onto the Board are Elizabeth Borysewicz, Shanda Easley and Stephanie Filippetti.
Easley is a Program Manager for Thames River Family Program in Norwich. Her daughter Helena has experienced gradual vision loss and is currently undergoing genetic testing to determine the cause. Learn more about Helena and Shanda here.
Borysewicz is an Educational Consultant with the State of Connecticut Department of Rehabilitation Services and the Bureau of Education Services for the Blind. She teaches students with visual impairments and has worked as a Braille transcriptionist. You can read Beth’s blog here.
Filippetti is Senior Accountant at Hoyt, Filippetti & Malaghan, LLC, headquartered in Groton. She brings extensive accounting experience to the board. The firm has supported Sofia Sees Hope from its inception.
Other Board of Directors members are: Michael Mondello, First Vice President, Investment Officer, Wells Fargo Advisors LLC; Jeffrey Finman, Ph.D., Independent Consultant, Jupiter Point Pharma Consulting, LLC; Dr. George Adrian, O.D., Owner, Groton Eye Center; Patricia Coan, Product Manager, Portfolio Development at Eagle Investment Systems; Charles Priebe, former Construction Executive.
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 degenerative genetic 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 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.