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June 2020

Visions 2020

June 18, 2020 - June 20, 2020
Hyatt Regency Minneapolis, 1300 Nicollet Mall
Minneapolis, MN 55403 United States
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Join Sofia Sees Hope at VISIONS 2020, the national conference of the Foundation Fighting Blindness, a one-of-a-kind event in which individuals who are visually impaired, and their families, have the opportunity to hear about exciting advancements in blindness research. All attendees can gain practical skills for thriving with vision loss, learn about products and services that can improve their lives, and connect with others from across the country. The program is designed specifically for individuals and families who are affected by…

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August 2020

A Toast To Treatments: A Fundraiser to Benefit LCA and Rare IRD Treatments & Community

August 22, 2020 @ 7:00 pm - 8:30 pm
$150

A unique blend of history and mixology, with two-time James Beard Award-winner and Master Mixologist Dale DeGroff, (aka King of Cocktails). Invite a few friends, fire up the Zoom, and join Dale and Erik Andersson, Eastern Region Ambassador for Hendrick’s Gin, for "The Evolution of the Martini: From 1888 to the New Millennium." James Beard Award Winner, Mixologist Dale DeGroff developed his techniques tending bar, most notably at New York's famous Rainbow Room, where he pioneered a gourmet approach to…

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October 2020

Bidding in the Dark

October 8, 2020 - October 10, 2020

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, our sponsors have provided hints. For a few of the items, we've attempted to simulate what the item might look like to someone who has a rare…

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January 2021

Webinar: Let’s Chat About … the Latest in LCA Therapy Research

January 27 @ 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. Ben Shaberman, Senior Director,…

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February 2021

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

February 8 @ 4:00 pm - 5:00 pm

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…

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

February 16 @ 3:00 pm - 4:00 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. Wiley Chambers, MD, Supervisory Medical…

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LCA Research Update: IQCB1/NPHP5-associated retinal dystrophy

February 18 @ 12:00 pm - 1:00 pm
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…

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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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