Sofia Sees Hope Rebrands with New Name, Same Mission
Hope in Focus Reflects NPO’s Global Impact
Ledyard, CT (October 19, 2021) — Sofia Sees Hope, a nonprofit that has been raising research funding and awareness around Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs) since 2014, today unveiled a new name and logo. The rebrand is designed to reflect the organization’s growing global impact.
The mission remains the same and stronger than ever: to generate LUXTURNA™ (voretigeneneparvovec), is the first pharmacologic treatment for inherited retinal disease and the first gene therapy for a genetic disease in the US Ledyard, CT – Sofia Sees Hope, a patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by rare inherited retinal diseases (IRD), applauds the U.S. Food and Drug Administration’s Dec. 19 approval of LUXTURNA™, the first gene therapy for a genetic disease in the United States.
Spark Therapeutics’ Ledyard, CT –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 Mystic, CT – Tickets are on sale for the annual culinary adventure, Dinner In the Dark, taking place Saturday, October 14, 2017 at the Mystic Marriott Hotel & Spa.
Now in its fourth year, Dinner in the Dark is the major annual fundraiser for Sofia Sees Hope, a 501(c)(3) nonprofit organization dedicated to funding research and providing education and support to families affected by blindness caused by Leber congenital amaurosis (LCA) and other rare inherited retinal diseases.
This event comes at a Oct. 22 fundraiser for Sofia Sees Hope to feature Jean Bennett M.D., Ph.D. from the University of Pennsylvania Mystic, CT – Dr. Jean Bennett, M.D., Ph.D., a groundbreaking researcher from the University of Pennsylvania who is working to cure blindness, will be the keynote speaker at this year’s Dinner in the Dark event to benefit local charity Sofia Sees Hope.
In its first two years, Dinner in the Dark raised more than $130,000 to fund research into rare retinal diseases. With the third dinner coming up
Sofia Sees Hope Rebrands with New Name, Same Mission: Hope in Focus Reflects NPO’s Global Impact
Sofia Sees Hope Lauds FDA Approval of LUXTURNA™
Sofia Sees Hope Expands Board of Directors
4th ''Dinner in the Dark'' to Benefit Inherited Retinal Disease Community Oct 14
Innovative Researcher Will Speak at 3rd Annual 'Dinner in the Dark' Event
Tuesday, October 19, 2021
Wednesday, December 20, 2017
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