Sofia Sees Hope Book Club: Read “Lila and Hadley”

Welcome to the inaugural Sofia Sees Hope Book Club! This club is especially made for middle school-age kids who are visually impaired. It will be moderated by Sofia Priebe, a high school senior in Connecticut who has vision loss due to Leber congenital amaurosis (LCA). The Book Club will meet weekly on Zoom beginning Monday, […]

Let’s Chat About: FDA Review of Rare Retinal Disease Treatments

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free

LCA Research Update: IQCB1/NPHP5-associated retinal dystrophy

We invite you to attend the research update for IQCB1/NPHP5-associated retinal disease (also known LCA 17). Speakers are Amy Laster, Phd, Foundation Fighting Blindness; Todd Durham, PhD, Foundation Fighting Blindness, and Laura Manfre, co-founder and president of Sofia Sees Hope. Our speakers will 1) share an overview of the Scientific Advancement Workshop that took place […]

Free

LCA Research Update: CRB1-associated retinal disease

We invite you to attend the research update for CRB1-associated retinal disease (also known as LCA 8). Speakers are Amy Laster, Phd, Foundation Fighting Blindness; Todd Durham, PhD, Foundation Fighting Blindness, and Laura Manfre, co-founder and president of Sofia Sees Hope. Our speakers will 1) share an overview of the Scientific Advancement Workshop that took […]

Free

Let’s Chat About … Genetic Testing

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free

A Toast to Treatments: St. Patrick’s Day Edition

Put on your green and join us for a unique blend of history and mixology, with James Beard Award Winner Mixologist Dale DeGroff, (AKA the King of Cocktails)! Fire up the Zoom and enjoy a live presentation that includes a history of the Irish Coffee, along with tips, tricks and the stories behind these Irish-themed […]

Let’s Chat About … natural history and patient outcome studies

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Let’s Chat About … My Retina Tracker

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Scavenger Hunt 2021

Welcome to the Sofia Sees Hope Scavenger Hunt! We launched it last year because of the coronavirus crisis, when in-person fundraising went dark and we were unable to be with our family and friends in person. It was so fun that we are bringing it back this year, even as COVID restrictions are being lifted in many […]

$100

Let’s Chat About … The Importance of Self Advocacy

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free
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