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March 2019
A Rare Opportunity
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…
Find out more »July 2019
New Kids On The Block: The Mixtape Tour
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…
Find out more »LCA Family Conference 2019
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
Find out more »February 2020
NORD Connecticut Rare Action Network Rare Disease Day 2020
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.
Find out more »April 2020
CANCELED: A Rare Opportunity: New York Times Bestselling Author Kody Keplinger
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…
Find out more »June 2020
Visions 2020
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…
Find out more »August 2020
A Toast To Treatments: A Fundraiser to Benefit LCA and Rare IRD Treatments & Community
$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…
Find out more »January 2021
Webinar: Let’s Chat About … the Latest in LCA Therapy Research
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,…
Find out more »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 »