A Rare Opportunity
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A Rare Opportunity
March 30, 2019 @ 6:00 pm - 8:30 pm
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 High School who dances and rows, diagnosed with Leber congenital amaurosis.
- Diana Owen, Head of School at Pine Point in Stonington. She was diagnosed in her 40s with a macular hole, a condition that results in change and loss of vision over time.
- Hosted by Dr. Amy Bass, author, professor and lecturer
Tickets
- $100 per person
- Add an autographed copy of “Now I See You” +$25
- Add an exclusive “Rare Tasting” ticket and enjoy a tasting of four champagnes, including the aptly named Rare Genisis, Piper-Heidsieck. Courtesy of Mike Mondello and Mystic Financial Group; +$150 (only 16 available)
Join us for cocktails and appetizers before the presentation, and dinner after the presentation.
Doors open at 6 p.m., presentation and panel from 6:30-7:45 p.m. Cocktail attire.
Thank you to our generous sponsors and patrons for supporting this event. All proceeds will benefit Sofia Sees Hope’s programs to support research and patient access to genetic testing.
Presented by:
Dominion Energy
Editas Medicine
Bank Square Books
Simply Majestic
Mystic Financial Group
We would also like to thank the following corporate supporters of Sofia Sees Hope:
Meira GTx
Sanofi Genzyme
Spark Therapeutics
About the panelists
At the age of 19, Nicole Kear’s biggest concern is choosing a major in college — until she gets a life-changing diagnosis of retinitis pigmentosa. She has only a decade or so before she is blind. Kear decides to make the most of the vision she has left. She joins circus school, tears through boyfriends, travels the world, and through all these hi-jinks, she keeps her vision loss a secret. Told with humor and irreverence, “Now I See You” is an uplifting story about refusing to cower at life’s curveballs, about the power of love to triumph over fear. But, at its core, it’s a story about acceptance: facing the truths that just won’t go away, and facing yourself, broken parts and all. Kear will give a talk on the experiences that led to her memoir.
In 2017, then 17-year-old Long Island resident Christian Guardino stepped onto the America’s Got Talent audition stage, and blew away the judges with his rendition of the Jackson 5’s “Who’s Lovin’ You.” Guardino had undergone experimental eye surgery five years ago as part of a clinical trial for a revolutionary genetic treatment for Leber congenital amaurosis with the RPE65 genetic mutation. Before surgery, Christian had difficulty seeing even in very bright light, having slowly lost vision since toddlerhood.
Sofia Priebe is the inspiration for the founding of Sofia Sees Hope. She is a sophomore at Ledyard High School who has LCA and has progressively lost vision since early childhood. Sofia has not let that stop her, as she pursues her academic career, dances, and rows crew.
Diana Owen is Head of School at Pine Point in Stonington. She was diagnosed in her 40s with a macular hole, a condition that results in change and loss of vision over time.
Panel moderator is bestselling author Dr. Amy Bass, whose 2018 book “One Goal” was named one of the best nonfiction sports books of 2018 by The Boston Globe.