A Record Breaking Dinner in the Dark

Our fourth annual Dinner in the Dark event broke all our past records: most attendees, most money raised, and most fun ever.

More than 370 guests attended Dinner in the Dark, the primary fundraiser for Sofia Sees Hope, a nonproft that provides advocacy and education for those living with Leber congenital amaurosis (LCA) and their families. We thank each one of you for your participation at such a fabulous event that featured a cocktail reception, a three-course gourmet dinner with wine pairings, dessert stations, a live auction and dancing.

There’s a million stories to tell from this extraordinary gala held at the Mystic Marriott Hotel & Spa on Saturday, Oct. 14. And I am so happy to share with you my fortunate experience with Jack McCormick and Jake, his beloved 5-year-old black lab/golden-mix guide dog.

Jack, as you might know from our new Seeing Hope quarterly newsletter online and in print, is a 20-year-old college business honors student who lives with Leber congenital amaurosis (LCA) due to mutations in the RPE65 gene. In our inaugural newsletter published earlier this month, Jack wrote in his College Connection column that his diagnosis led to his passion for accessibility and inclusion.

I met Jack via email months ago, but I got to meet him in person at the cocktail reception when he entered the room with Jamie Ring, Head of Patient Advocacy with Spark Therapeutics . Jamie and Sofia Sees Hope Co-Founder and President Laura Manfre had returned just two days earlier from Washington, D.C., where a Food & Drug Administration’s advisory committee   heard testimony on behalf of Spark regarding decades’ long research into a genetic therapy for patients with RPE65 inherited retinal disease (IRD).

Also speaking before the committee, Laura told members that Sofia Sees Hope was named for her now 14-year-old daughter with LCA; she described a life-changing story about the oldest patient in research trials and the dire importance of improving any amount of vision, for any amount of time, for anyone with RPE65 retinal dystrophy. The committee unanimously voted to recommend approval, which could lead to this therapy being the first pharmacologic treatment for IRD and the first gene therapy for a genetic disease in the United States.

In the large, noisy hall of the cocktail reception, I walked in front of Jake, as we made our way for Jack to get a glass of Prosecco at a table filled with slender flutes – a perfect place to mingle as people approached Jack. I’d never made introductions on behalf of someone visually impaired and immediately I felt this little lift, this little delight in my role of telling people that this was Jack and he flew in from Ontario this afternoon and he’s part of our writing team on the newsletter and he’s an honors business student at Canada’s Wilfrid Laurier University and yes, here’s Jake, and no, you can’t pet him because he’s working and he’ll get distracted.

Jack took it from there (or even before) and engaged with my husband, Michael, and my former newspaper colleagues, including my friends Karen from Guilford, and Tony and his wife, Kathy, who live in Old Saybrook and who also represented one of our generous sponsors, Charter Oak Federal Credit Union .

Amid the folks coming our way, David Brint, appeared out of nowhere, gregariously introduced himself and turned to Jack and said are you Jack? Jack McCormick? Hi, I’m David Brint, chairman of the board of the Foundation Fighting Blindness . Attendees would see him a little later when he addressed the gathering as Dinner in the Dark’s guest speaker.

David asked Jack how he was doing, how old he was and talked about his son, Alan, who also is in college and lives with Leber congenital amaurosis. They talked about GPS technology helping people with visual impairment be more independent. He asked Jack about the news on the RPE65 gene therapy and whether it might work for him. Probably not, Jack said, because of his age. David then peppered Jack with questions about whether he’s seen this doctor or that doctor or another doctor. You should. You should. Make sure you do. Before he left he told Jack he knew that in his lifetime he would see better than he sees now. He just knew it.

By then it was time to find our seats in this grand ballroom; again, lucky me, Jack and Jake sat at my table. So did Jenny and Kevin Cohane from Norwell, Mass. The Cohanes have two children and one of them, 8-year-old Annie, has LCA. They chatted a long time with Jack, while Jake stayed under Jack’s chair, with his tail sticking out from under it.

At our table, Jack also met Helena Damas and her mother, Shanda Easley, from New London. Helena also played a special role at the event as she appeared in a video telling the story of her and her mother’s search for answers to her visual impairment. With the lights down, Helena leaned her head on her mom’s shoulder and watched the screen, while mom held up her phone, recording it all for the future.

Also joining us were Heather and Christopher Drury and their daughter, Paige, a Glastonbury teen-ager who hopes to become a musician . Lisa Carberg, one of the event presenters, introduced Paige, who has LCA, along with Sofia Priebe, Laura’s daughter. They took the stage before diners donned their eye masks to simulate blindness, and they offered eating tips, such as remembering to bring your fork to your mouth rather than bringing your head to your plate, which as we learned, is exactly what you want to do when you can’t see your food.

Eating without seeing your food and your tablemates felt a little isolating. I found myself sitting at the table, looking at the inside of my eye mask and all of its blackness. I knew my friend Karen was to my left and Helena and her mom to the left of Karen, and then my husband, the Drurys, the Cohanes and then Jack and Jake on my right. But for gaps of time I hardly spoke; I listened to other people talking. The isolation lessened for me because I’m used to meditating and sitting with my eyes closed. I also did not feel claustrophobic, but I can imagine some people would get that feeling.

I did not use my utensils well. Karen and I unashamedly admitted to feeling around our plates with our fingers to get a better idea of what we were eating. We could only guess, until we were informed after finishing our plates. We initially were told only which utensil to use; fork for first and third courses, spoon for the second.

We enjoyed fabulous food thanks to Executive Chef Ryan Fenick of the Mystic Marriott and 4 Diamond Octagon Steakhouse!

First course: Japanese potato-crusted scallops with cauliflower curry puree accompanied with segments of grapefruit, lemon and lime, and scent of pine.

Second course: Warm zucchini soup topped with zucchini noodles and a cool red pepper foam.

Third course: Beef Wellington with red pepper ragout, grilled vegetables, potato gratin, with rosemary scent.

Dessert station outside of the dining area, in the cocktail reception hall: Lots of goodies, along with a live-action, Smoked-S’mores station with graham cracker tart, chocolate ganache, chocolate mousse and torched marshmallow topping.

Then came the spirited live auction with Mike O’Farrell of L+M Hospital as auctioneer, followed by some pretty crazy dancing to music by The Cartells.

What a blast!