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March 2019

A Rare Opportunity

March 30, 2019 @ 6:00 pm - 8:30 pm
Lake of Isles, 1 Clubhouse Dr
North Stonington, CT 06359 United States
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  Please join us for an evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. Featuring: Nicole Kear, bestselling author of the memoir “Now I See You,” about her diagnosis with retinitis pigmentosa. Christian Guardino, Howie Mandel's 2017 Golden Buzzer winner on America’s Got Talent, diagnosed with Leber congenital amaurosis, who received gene therapy to reverse vision loss. Sofia Priebe, sophomore at Ledyard…

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July 2019

New Kids On The Block: The Mixtape Tour

July 3, 2019 @ 7:30 pm - 10:30 pm
Mohegan Sun, 1 Mohegan Sun Blvd
Uncasville, CT 06382 United States
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NKOTB Mixtape Tour at Mohegan Sun Arena Skybox Wednesday, July 3, 2019 7:00 p.m. Buy Your Tickets! New Kids On The Block launched their biggest tour in years in May, and Sofia Sees Hope has scored a skybox at Mohegan Sun Arena! Join us as we travel down Memory Lane on THE MIXTAPE TOUR with NKOTB and VERY special guestsSalt N Pepa, Tiffany, Debbie Gibson and Naughty by Nature. WOW… can you believe that??? Enjoy the concert in style with…

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LCA Family Conference 2019

July 26, 2019 - July 28, 2019
Warwick Rittenhouse Square, 220 S 17TH ST
PHILADELPHIA, PA 19103 United States
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Join Sofia Sees Hope for its 2nd LCA Family Conference in Philadelphia. In multiple sessions, hear the latest in research, treatments, education, and advocacy in the Leber congenital amaurosis and inherited rare disease communities. Families living with LCA or IRDs connect in a convivial atmosphere of shared stories and mutual support. 2019 CONFERENCE INFORMATION  

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February 2020

NORD Connecticut Rare Action Network Rare Disease Day 2020

February 28, 2020 @ 8:00 am - 10:30 am
Connecticut State Legislative Office Building, 300 Capitol Avenue
Hartford, CT United States
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Please join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event on Rare Disease Day to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Connecticut.

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April 2020

CANCELED: A Rare Opportunity: New York Times Bestselling Author Kody Keplinger

April 26, 2020 @ 2:00 pm - 4:00 pm
La Grua Center, 32 Water Street
Stonington, CT United States
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WE HOPE TO RESCHEDULE IN THE FALL. Sofia Sees Hope presents "A Rare Opportunity: Kody Keplinger," New York Times bestselling author who lives with Leber congenital amaurosis. Kody Keplinger was born and raised in small town western Kentucky, where she began her writing career after penning The New York Times bestseller, The DUFF, at age 17. Kody has Leber congenital amaurosis (LCA), a rare inherited retinal disease (IRD) that causes low vision or blindness, typically from birth. Join us as…

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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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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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