4th ‘Dinner in the Dark’ Raises $200K for Inherited Retinal Disease Research
Ledyard, CT (Oct. 25, 2017) — The Oct. 14 ‘Dinner in the Dark’ event hosted by Sofia Sees Hope raised nearly $200,000 to support its advocacy and education programs for families affected by Leber congenital amaurosis (LCA), a rare inherited disease that causes blindness. The event also helps fund research for cures and treatments.
The event capped a busy week for Sofia Sees Hope, a 501(c)(3) nonprofit organization. On Thursday, Oct. 12, SSH co-founder Laura Manfre was in Washington, D.C. to testify before a U.S. Food & Drug Administration panel about a proposed genetic therapy for Leber congenital amaurosis caused by the RPE65 gene mutation. As a presenter at the FDA’s public advisory meeting of the Cellular, Tissue and Gene Therapies Advisory Committee (CTGTAC), Manfre represented patients and families living with LCA and other rare inherited retinal diseases.
Following the day of testimony, the committee voted unanimously to recommend to the FDA approval of Spark Therapeutics’ LUXTURNA™ (voretigene neparvovec), an investigational, potential one-time gene therapy that would help those with RPE65 gene mutation form of LCA.
The success of the 4th annual Dinner in the Dark comes at an important time, Manfre notes. “With the incredible advances in research, we are closer every day to being able to treat — and even cure — rare diseases that used to be a life sentence. It is critical now more than ever that we have an educated and informed patient community that is receiving the support they need and makes their voice heard in industry and policy. Funds raised through Dinner in the Dark will go a long way toward helping us achieve our goals for the LCA community.”
About Sofia Sees Hope
Sofia Sees Hope was founded in 2014 by Laura Manfre, whose daughter Sofia has Leber congenital amaurosis (LCA). This rare degenerative genetic condition causes the cones and rods in the retina to deteriorate and eventually 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 support, education and outreach to those affected by LCA and retinal disease.
Since its inception, Sofia Sees Hope is on track to provide a quarter million dollars of support for cutting edge proof of concept research to cure blindness, free genetic testing for 15 families, and to provide valuable support, outreach and education to those impacted by LCA and rare inherited retinal disease.
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Sofia Sees Hope