Hope in Focus Grateful for 2023 Dinner in the Dark Success

 In Blog

So much more than a typical fundraiser, the 8th Hope in Focus Dinner in the Dark we advertised as “a unique sensory experience,” gave guests just that and much more Saturday, Oct. 14, 2023, at the Mystic Marriott Hotel & Spa in Groton, Connecticut.

Dinner in the Dark afforded the opportunity for guests to experience their dinner in a different way – wearing blindfolds. For a short time it offers a small taste of what it might be like for someone dealing with a rare retinal disease. This key fundraising event supports our mission of “Seeing a cure for blindness,” as we advocate for people living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs).

Hope in Focus counted 273 attendees this year, with the event raising more than $200,000, a record amount for our annual fundraiser.

Laura Manfre

The evening is about bringing people together to connect with the mission of Hope in Focus, as we work to transform the lives of those living with blindness caused by LCA and raise funds to support research treatments.

Our hope for those treatments is becoming a reality through the half-million dollars we have raised throughout the years with the vital support from contributors and from people like those attending the dinner.

These essential dollars fund myriad retinal research studies here and abroad, and they ensure access to free genetic testing, a critical step toward finding retinal-disease treatments.

“Even as science advances, we still have only one treatment on the market today for just one form of LCA,” said Laura Manfre, Hope in Focus Co-founder and Board Chair. “We need to do better. We need to continue advancing the science, but also move the science from the lab and the clinic to the community waiting for treatments.

“It is with deep gratitude,” she said, “that we thank all the people who came out to support our efforts to improve the lives of people living with rare retinal disease and help advance research for treatments. We could not do this without you, and we are forever grateful for your contributions toward our mission.”

Courtney Coates, Director of Outreach and Development, shared with the guests Hope in Focus’ work in delivering updates and research progress in our newsletter, across social, in our Let’s Chat About webinar series, and at our 3rd LCA Family Conference this summer, when we welcomed LCA families from across the country, as well as Canada, Mexico, China, and Turkey. She also shared news about our then-upcoming hosting of an LCA Patient Listening Session with the Food and Drug Administration.

Our zebra, Luca Priebe, with Courtney Coates

“Tonight for a brief time, you will get a taste of what it might be like to live with vision loss, including some of the social challenges that accompany it,” Courtney said. “We hope this will move you to join our journey, as we continue our work to fund research to treat blindness caused by LCA and expand our advocacy activities.”

Courtney, our sole full-time Hope in Focus staff member, thanked each of our sponsors, and there were many. Click here for a complete list of our 2023 Dinner in the Dark sponsors.

She also thanked our Dinner in the Dark Committee members – without whom the event would not have been possible – for volunteering their countless hours behind the scenes.

Dr. Daniel Chung

Laura described for newcomers the origin of Hope in Focus and its mission. She founded the organization in 2014 with her husband, Charles Priebe, and close friend Elisse Rosen, having been brought into the rare retinal disease community by her daughter Sofia, who was diagnosed with LCA at age 2.

Heading into its 10th year, Hope in Focus has grown into a global patient advocacy organization, supporting the LCA community and researchers seeking cures and therapies for rare inherited retinal diseases.

Laura introduced the evening’s key presenter, Dr. Daniel Chung, as a “rock star.” Dr. Chung is Chief Medical Officer for SparingVision, an ocular genomic medicine company. His work focuses on therapies to combat blinding diseases. He made a point of praising the courage of participants in clinical trials. These patients offer themselves to science, not knowing what the result may be, or if there will be any result at all.

“The real rock stars,” Dr. Chung said, “are those who say, ‘I’m going to be part of a clinical trial.’”

The final speaker before dinner was probably the most instructive. Sofia Priebe spoke via a video presentation to provide tips for a successful Dinner in the Dark experience.

Sofia advised on such techniques as determining which side of your knife is sharp, using utensils to gently explore the food on your plate, and remembering to always identify yourself and the person you’re speaking to in conversation at the table.

Now a junior at college, she spoke with the poise and grace of someone beyond her years. In her final tip, perhaps the most important, she advised: “Food to face, not face to food.”

Roger Nicholson, Executive Chef of the Mystic Marriott Hotel & Spa, prepared the dinner presented in four courses. To see the menu, please go to: https://hopeinfocus.org/whats-for-dinner/

Each course tasted delicious, and Sofia’s advice was put to good use as well, with one participant heard to exclaim, “It’s a square plate! Use the grid system!”

Attendee Karen Clarke of Guilford said navigating a meal while blindfolded is challenging and humbling.

“The experience gives you a small glimpse into the challenges so many deal with every day. It’s a great motivation for us to help with research – and be thankful for our own sight when the blindfold comes off.”

Rosalie and John Maxham of Stonington attending Dinner in the Dark for the first time.

“We came away appreciating this organization devoted to helping find a cure for a disease we never knew existed, and we were very happy to lend our support to this zebra.”

The live auction, requiring no blindfolds, followed dinner, with Master of Ceremonies Mike O’Farrell auctioning up for bid items and experiences, a list of which can be found at: www.hopeinfocus.org/get-involved/dinner-in-the-dark/live-auction

After sweets for dessert, guests headed for the dancefloor for music by The Cartells.

We at Hope in Focus thank all the participants and faithful sponsors of Dinner in the Dark and look forward to an exciting event in 2024.





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