93 - Community, Connections, Commitment: The First Annual Caren Leib Gala

The SynGAP Research Fund’s first fundraising gala is in the books and by all accounts it was a huge success! 

On the evening of October 23, 2021, SRF board member Nancy Leib Kessler, sister to Syngapian Caren, hosted The First Annual Caren Leib Gala at the Raritan Valley Country Club in Bridgewater, New Jersey. With over 90 attendees, including 16 Syngap families and 3 Syngapians in attendance, it was a very special evening. This was our first gathering since before the pandemic started almost two years ago, making it all the more meaningful. 

Background

Caren, age 65, was diagnosed with SYNGAP1 just last year. Her story was made into a 15-minute movie well worth watching. Caren is the oldest known Syngapian in the US, making her somewhat of a celebrity in the Syngap community. Her story also shows just how tenacious Syngapians are: Caren was diagnosed with Covid-19 in 2020 and was not expected to survive. Yet she fought that illness and came out healthy. It was during this time that she received a genetic diagnosis for SYNGAP1. And this past summer, sister Nancy decided she wanted to host an event in Caren’s name.

Community

As Nancy says in the movie: With the diagnosis came a community in SRF. It’s a community of parents and family members that understands what it means to get a diagnosis of SYNGAP1, one that walks together on the journey of living with a Syngapian. Nancy quickly brought her energy and compassion to the work SRF was doing, and it wasn’t long before she was welcomed as a board member. Nancy envisioned an event where the community could gather to meet each other, educate and learn from others, and raise money for the leading-edge research that SRF is funding. She rallied a team and that’s exactly what happened.

Connections

After many hours of planning, the day arrived! There was a high level of energy right from the start as Syngap families who have mostly only met online got to greet each other in person. They started sharing stories right away. There were parents, siblings, aunts, nieces and more. So very special! There were also plenty of friends of the Leib family to meet. The evening included a cocktail hour where people could bid on some impressive auction items, including jewelry, artwork, vacation experiences, gift baskets and sports/music memorabilia.  

A very special treat was to meet two other Syngap celebrities, Ashlee and Shaan. All three Syngapians brought joy and poignancy to the event. Here are the wonderful stars:

Over dinner, attendees were able to hear from some impressive speakers, including Ashley Evans, SRF co-founder and Syngap mom; Dr. Benjamin Prosser, Syngap researcher and rare disease dad from UPenn; Margie McGlynn, co-founder of HCU Network America and rare disease sibling; and Jess Duggan, SRF volunteer and parent. Emcee George Falkowski kept the evening moving forward with humor and ease. We’re grateful to each of the speakers who educated and inspired. They reminded us why we can hope for a cure for SYNGAP1. The science is so close!

Commitment

Of course, making science happen takes money, so in addition to the amazing connections that were made and community that was strengthened, this was an opportunity to commit to the cause with a donation. One hundred percent of the contributions received go towards funding SYNGAP1 research. Contribution amounts are still being tallied, but it looks like people were generous, so thank you so very much.

Weren’t able to attend the event? No worries--there’s still time to commit, to contribute! Just go online here to make a donation. Each donation makes a difference.

Thank Yous

‍Thank you to our generous sponsors, listed below; to all who contributed auction and in-kind items; and to Grandstand Sports & Memorabilia who ran the auction. Thank you to the Raritan Valley Country Club for hosting. Thank you to Nancy and the creative and energetic planning team at SRF who worked tirelessly for months to make this happen, and thank you to all who attended and made the event a success!

Now please enjoy some scenes from the evening in this short video:

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Our sponsors: