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February 2021

LCA Research Update: CRB1-associated retinal disease

February 19 @ 12:00 pm - 1:00 pm
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…

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March 2021

Let’s Chat About … Genetic Testing

March 15 @ 1:00 pm - 2:00 pm
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…

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

March 17 @ 7:00 pm - 8:00 pm

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…

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April 2021

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

April 19 @ 1:00 pm - 2:00 pm

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…

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May 2021

Let’s Chat About … My Retina Tracker

May 13 @ 1:00 pm - 2:00 pm

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,…

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Scavenger Hunt 2021

May 21 - May 31
$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.…

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June 2021

Let’s Chat About … The Importance of Self Advocacy

June 16 @ 7:00 pm - 8:00 pm
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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September 2021

Let’s Chat About … the importance of the patient voice in rare disease

September 29 @ 1:00 pm - 2:00 pm
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. Jill Dolgin, PharmD, Head…

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October 2021

Let’s Chat About … CRISPR and gene editing technology

October 18 @ 1:00 pm - 2:00 pm
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. Monica Roy is Vice…

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Bidding in the Dark

October 22 - October 29

Yes, we are asking you to tap your inner adventurer and philanthropist and bid on items that you might not have all the details around. We call it, Bidding in the Dark. For all of the items, we've provided some descriptions, so you're not completely in the dark. For some of the items, there are hints. For a few of the items, we've attempted to simulate what the item might look like to someone who has a rare retinal disease.…

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