Sofia Sees Hope Receives Donations To Help Families Attend LCA Conference
(May 22, 2019) — Sofia Sees Hope received two grants in May from southeastern Connecticut organizations that will be used to help cover travel expenses for families to attend its second LCA Family Conference in Philadelphia in July.
Sofia Sees Hope is a 501(c)(3) nonprofit 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 Mystic Lions Community Foundation donated $1,000 to SSH at its annual Night of Giving May 16. The funds come from proceeds of events and fundraisers the group hosts throughout the year, including the popular annual Vintner’s Sale and Wine Tasting, which takes place in November at Mystic Aquarium.
On May 20, the Savings Institute Foundation donated $3,050 to SSH. The Savings Institute was recently purchased by Berkshire Bank, and its Board of Directors decided to liquidate its charitable foundation as part of the merger. Each board member was asked to choose three nonprofits to donate funds to. Savings Institute board member Michael Garvey, a principal in Garvey, Steele & Company, LLP, chose Sofia Sees Hope as one of his beneficiaries.
Helping families attend LCA conference
Laura Manfre, co-founder and chair of Sofia Sees Hope’s Board of Directors, said the two donations will be combined to kick-off an assistance fund for families hoping to travel to the organization’s conference in Philadelphia July 26-28.
“In 2018, we raised $10,000 thanks to the Power of Together 2 members, to make it possible for families to travel from across the country to our LCA Family Conference in Groton, CT,” Manfre said. “They came from all over New England, as well as the West Coast, North Carolina, Iowa, Illinois, and even Mexico to attend the conference. This was the first time we staged a conference, and it was so gratifying to see families be able to connect with each other and spend time together. And not just parents. Because it is a true family conference, it was a chance for kids to make new friends as well.”
Manfre said the organization again hopes to raise $10,000 to help families travel to this year’s conference in Philadelphia.
“We will use these two amazing donations to seed our conference travel fund,” she said. “A donation of $125 covers the price of one attendee to the full conference. $400 covers the cost of the hotel for two nights. $2,500 covers childcare for the entire conference, so parents can focus on the informational sessions, and know their kids are having a great time on an excursion.”
To help support the LCA Family Conference Travel Fund, visit sofiasees.org/donate/ or send a check to Sofia Sees Hope, P.O Box 705, Ledyard, CT 06339.
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.