Natalie Principe is mom to Eliza (6 years old), who was diagnosed with SYNGAP1 in 2019 at the age of 2. Natalie, her husband Nick, and their two children live in Atlanta, GA.
August 26, 2023 was one of those magical nights that feels pretty foreign to most of us Syngap parents. For one thing, my husband and I were out…together…without children….and even dressed in cocktail attire. For another, I was surrounded by people who have not only heard of SYNGAP1, but many of whom actually understand deeply what it is to live with the diagnosis. Finally, the night was magical because the entire premise that brought over 300 people together in a gorgeous setting was hope for our loved ones affected by SYNGAP1. The motto for this year’s Syngap Soirée was “New Year, Renewed Hope,” and indeed the sense of hope was a palpable feeling in the ballroom that night.
I really can’t tell you much of anything about the Syngap Soirée without also telling you about Suzanne Jones, Chair of both Syngap Soirée and SRF’s U.S. Board of Directors. To put it simply, Suzanne is a force, and every member of the Syngap community is lucky to have her on our team. The Syngap Soirée is no small endeavor and Suzanne spent the better part of a year arranging every detail large and small. A very special evening brought to us by the passion and dedication of a very special person. Thank you, Suzanne!
The setting for the evening was the storied and more than 100 year old Piedmont Driving Club where things kicked off at 6 p.m. with a sponsor social. The Club’s beautiful Alexandria Room played host to this portion of the party where sponsors were able to get an early peek at the auction items. My husband and I grabbed a cocktail from the bar and a couple of hors d’oeuvres (Nick rated the country ham biscuit a 5/5) while we greeted old friends and introduced ourselves to new ones. The room began to fill up quickly as more attendees arrived for the welcome reception.
At 7:30 sharp there was a literal gong rung throughout the room indicating that it was time to head into the ballroom for dinner! Once everyone was seated, we began with a delicious radicchio and spinach salad followed by surf and turf (salmon and strip); a far cry from the chicken nuggets and grilled cheese that usually grace our plates! Co-Hosts Suzanne and Jennifer set a beautiful tone for the evening with their heartfelt and eloquent opening remarks.
The ballroom was loud with laughter and conversation as everyone enjoyed their meal and a glass of wine (or two). The ballroom overlooked the courtyard and it was about this time that the sun was setting. (I swear I’m not making that up; it was really that picturesque.) The incredible meal finished up with one of The Driving Club’s signature desserts (renamed the Syngap Spark just for the night).
Emcee of the evening, Atlanta News First chief meteorologist Jennifer Valdez, and auctioneer Taylor McCauley announced the winner of the Golden Spark. Shoutout to Leslie at Table 14 – enjoy those Braves tickets and the diamond bracelet, I didn’t even really want them anyway.
The live auction followed and raised over $25,000 for the SynGAP Research Fund!
Our emcee then introduced Ashley Frye, whom you may have heard as the host of SYNGAP1 Stories podcast. Ashley was so gracious to come to Atlanta for this event. Please take some time to watch Suzanne’s recording – Ashley’s speech was very powerful.
We next viewed the incredibly poignant movie created by the Foster family about their daughter Hattie, affected by SYNGAP1:
These speeches and videos communicate the reality of raising a child with SYNGAP1. It can be difficult to express the harsh reality of what we experience on a daily basis, whether because we don’t want to complain too much, or because we’re afraid our friends and family won’t get it, or simply because we are tired of talking and thinking about it non-stop. An evening like the Soirée reminds us all of the power and necessity of our advocacy for our children and loved ones with SYNGAP1. We are surrounded by people who want to help, who want to see what their friends and loved ones are experiencing, and who want to be a part of the search for a cure.
The paddle raise that followed these emotional moments was very energetic and a lot of fun as our auctioneer kept things moving briskly. This was a particularly surreal moment for us to watch as the number of donations kept going up and up as offers to match donations were made and more and more paddles kept coming up to be counted. We have seen how important all of this is in making lives better for those with SYNGAP1 and those caring for Syngapians. Again, to sit back and see all of this incredible energy focused on making our child’s (and every Syngapian’s) life better was a moment that we will not forget. Our family is so grateful to everyone that worked so hard and donated so much to make it happen.
Thank you to all the sponsors, donors, and attendees. The evening netted around $300,000 – an incredible sum to help fund the effort to research treatments and find ways to better care for every current and future Syngapian. It is an astounding amount of money that can do so much for every single one of our families. The Syngap Soirée is an amazing event that is the result of so much hard work, love and time from Suzanne and Jennifer and every member of the host committee. At the risk of sounding trite, it was truly a night to remember.