A Spectacular Return to Dinner in the Dark 2022
More than 250 people gathered at the Mystic Marriott in Groton, Connecticut, on the evening of Oct. 22 to celebrate the latest research advances into Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs).
The extraordinary evening included a cocktail reception and a gourmet, multi-course dinner, paired with wine or beer – extraordinary because the night represented the return of our annual gala fundraiser since the pre-pandemic days of 2019 and because our guests tried to figure out the contents of their courses while wearing blindfolds. Only guests with visual impairment and the ability to read Braille knew exactly what they were eating because of the Braille-printed menu.
Executive Chef of the Mystic Marriott Hotel & Spa George Barry prepared the exclusive menu for the night.
The experience gave guests a taste of the isolation and social challenges that accompany visual impairment. It’s not easy.
Who’s talking to whom became confusing while listening to conversation without seeing the speakers. Unable to see among a ballroom full of people felt isolating at times, and the world easily reduced to one only within earshot. Servers offered descriptions of paired wines or beers and, standing to the right of each guest, gave a heads-up to incoming deliveries of beverages or dinner courses.
I can tell you a lot of finger-sliding around plates went on after several failed attempts to get that piece of protein to stay on the fork, despite handy tips given by Sofia Priebe, the daughter of Hope in Focus Founders Laura Manfre and Charles Priebe. Sofia, the catalyst for the organization, received her LCA genetic diagnosis as a pre-teen, and, before dinner, delivered her successful-dining advice for the visually impaired via video as the 19-year-old is away at college.
The crowd also viewed the Hope in Focus Dinner in the Dark annual video, featuring a Connecticut family’s journey with their son, who underwent compassionate use gene therapy for a form of LCA after learning about the treatment from a panelist at one of our LCA Family Conferences.
An enlightening and humbling experience
A first-time Dinner in the Dark attendee working in the biotech industry said the dining experience made a lasting impression, adding, “We think about the research aspect of LCA daily, but to experience a mere hour of life without sight was enlightening and humbling, and it gives us many new things to think about as we continue our research plans.”
Master of Ceremonies Michael O’Farrell introduced Susette Tibus, who with her husband, Chuck Sneddon, own and operate Simply Majestic of Mystic, and helped launch Hope in Focus. Susette’s bio could fill pages, but, to name a few of her endeavors, she is Vice Chair of the Board of Trustees of Mystic Aquarium, Advisor to the Greater Mystic Chamber of Commerce, and serves on the Boards of Directors of the Police Commissioners Association of Connecticut, Horizons, and the Westerly Hospital Foundation.
Susette told the gathering about her good friend Elisse Rosen, who asked in 2013 if she could introduce her to a woman doing some fundraising and could use some help.
“So, I told her what I tell everyone: ‘Yes, but tell her she’s only got five minutes.’ As many of you know, I’m involved in just a few things in our community, which means everyone gets just five minutes…
“From those first five minutes, Chuck and I have supported and watched this organization grow from a small nonprofit raising funds for research into a thriving organization dedicated to meeting the needs of an entire rare disease community.
“Today, Hope in Focus is the leading global advocacy organization for those living with the rare blinding disease Leber congenital amaurosis,” she said.
Hope in Focus beginnings
Following Susette, Laura Manfre, Board Chair for Hope in Focus and Member of the Board of Directors for the Foundation Fighting Blindness, explained her role.
“I didn’t get into rare disease advocacy because I like science or want to learn more about gene therapy or am fascinated with the retina. I know many of you here tonight are and I’m so glad you are. I am in it because I had a child born with something I couldn’t fix.
“I was a liberal arts major in college so I know how to bring people together to problem-solve – in four languages and iambic pentameter – and I can throw a party.
“But when you want to advance cutting-edge, life-changing treatments – when I want to make it possible for Sofia to retain the vision she has – I want the Foundation Fighting Blindness to lead the way. The partnership that Hope in Focus has with the Foundation is critical to ensuring that the funds we raise for treatments for LCA are put to the best use possible.
“They fund research that will lead to the prevention, treatment, and cures for the entire spectrum of retinal degenerative diseases, have a world-class team of experts, and a large scientific advisory board with leaders from around the world. They are, hands down, the leader in advancing treatments to reverse blindness and to restore vision.”
Foundation Fighting Blindness Chief Scientific Officer Claire M. Gelfman, PhD, the evening’s featured speaker, shared that the foundation funds grants across the globe and manages My Retina Tracker®, a patient registry vital to advancing research.
“Once your mutation has been identified, or information about your diagnosis has been given to you by your physician, our registry allows for enrollment not only in clinical trials, but also for research studies so that companies and researchers can learn more about the patient experience and incorporate that information into future clinical trials.”
In her closing, the leader of the Foundation’s overarching scientific strategy, focusing on research initiatives to accelerate new treatments and cures for inherited retinal diseases, she turned from the serious to the lighthearted, leading us to dinner with a fun rhyme she wrote for the evening and Hope in Focus.
Bidding, winning, and dancing
After dinner, guests bid on auction items ranging from a collection of spa services, jewelry, wines, and art to vacations here in the United States and in Italy, Chile, and Mexico. Lucky bidders are looking forward to enjoying sumptuous times and places.
Then, guests, who previously bought Simply Majestic boxes opened their randomly distributed packages, all containing pink mother-of-pearl pendants, except one.
The guest opening the box containing the only blue pendant won the grand prize of a stunning diamond-and-sapphire ring.
Then we danced the night away to The Dillon and Cooper Band.
“What an extraordinary evening,” Co-Founder and Board President Laura Manfre said after the event. “We were so happy to bring together, live and in-person, our first Dinner in the Dark since before the COVID pandemic. And we are so thankful for the sponsors and donors who made this a successful event.
“I cannot say enough about the people who helped put this all together, especially Director of Outreach and Development Courtney Coates, our only full-time employee who joined us last year. A big thank-you to you, Courtney, the Event Committee, the Board, Founders, Advisors, Staff, and the countless volunteers who donated their time and energy toward our advocacy and fund-raising mission here at Hope in Focus.”
As we know, it takes a village to put on a successful event. Here’s to the rest of our villagers:
Special thanks to our sponsors, including our Diamond Sponsor, Simply Majestic; our Platinum Sponsors, Spark Therapeutics, MeiraGTx, Editas Medicine, Yale New Haven Health Lawrence + Memorial Hospital; and our Gold Sponsors Liberty Bank, Southeast Connecticut Eye Care, Foundation Fighting Blindness, Eyecare Expressions, Mohegan Tribe, Mystic Financial Group, Groton Eye Center, The Remote Coxswain, and Gales Ferry Medical Group.
Our Silver Sponsors were the Chamber of Commerce of Eastern Connecticut, Atsena Therapeutics, Mystic Aquarium, Dominion Energy, Andersen Oil Co., Groton Utilities, SparingVision, Hoyt, Filippetti & Malaghan, and the Valenti Family of Dealerships.
Our Bronze Sponsors were Wireless Zone, Melissa Allen Pilates and Movement, Opus Genetics, Cardinal Honda, Duncklee Cooling & Heating, Greater Mystic Chamber of Commerce, Chelsea Groton Bank, Lahan & King, and Charter Oak Federal Credit Union.
In-Kind Sponsors were Beer’d Brewing Co., Angelini Wine, Eighty Six Media, Design Intervention, Foxwoods Resort Casino, and ABC Photo Lab.
And thanks to these donors: Aimee Filippetti of Never Enough Bake Shop, Cerulean Beauty & Spa, Colin and Carrie Kelley, G-Spa at Foxwoods, Le Spa, Pure Eco Spa & Boutique, Rob Rivers – The Salon and Spa, SB Medical Aesthetics, Simply Majestic, Studio Jeffrey P’an, Suzanne and Craig Ellery, The Spa at Norwich Inn, and Two Blind Brothers.