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February 2021
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, January 18, and last for four weeks. Each hour-long meeting will begin at 4 p.m., EST. Upon registration, you will receive a link to join…
Find out more »Let’s Chat About: FDA Review of Rare Retinal Disease Treatments
Free
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 to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease. Wiley Chambers, MD, Supervisory Medical…
Find out more »LCA Research Update: IQCB1/NPHP5-associated retinal dystrophy
Free
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 previously, 2) provide a summary of the latest research, and 3) answer your questions! For any questions about this event, please send an email to…
Find out more »LCA Research Update: CRB1-associated retinal disease
Free
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 place previously, 2) provide a summary of the latest research, and 3) answer your questions! For any questions about this event, please send an email…
Find out more »March 2021
Let’s Chat About … Genetic Testing
Free
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 to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease. Emily Place, Licensed Genetic Counselor…
Find out more »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 cocktails for your St. Patrick's Day celebration: a Strange Brew (for the beer lovers), an Irish Blond, a Dubliner, and of course, the perfect Irish…
Find out more »April 2021
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 to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease. Jonathan Stokes, Director, Patient-Centered Outcomes…
Find out more »May 2021
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 to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease. Todd A. Durham, MS,…
Find out more »Scavenger Hunt 2021
$100
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 places. Your (suggested minimum) donation of $100/team to enter will benefit Sofia Sees Hope, and the education, outreach and advocacy work we are engaged in.…
Find out more »June 2021
Let’s Chat About … The Importance of Self Advocacy
Free
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 to join any of the sessions, as we look ahead to a common goal of advancing treatments for rare retinal disease. Today we chat with Tami…
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