3rd Annual SynGAP Research Fund Gala Honoring Caren Leib, the Oldest Known Patient Living with SYNGAP1

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Nancy Kessler serves on the SynGAP Research Fund Board of Directors. She is a sibling to Caren, the oldest diagnosed person identified with SYNGAP1 at age 67. Nancy is co-host of the 3rd Annual Syngap Research Fund Gala honoring Caren Leib.  

Lauren Kessler is also co-host of the gala and niece to Caren. She spends her time volunteering for SRF and attending graduate school at the Rutgers MBS graduate program (Drug Discovery and Development).

We are thrilled to share with you the success of the Third Annual SynGAP Research Fund Gala, at the Raritan Valley Country Club in Bridgewater, New Jersey on Oct. 21, 2023. The Gala was sold out with 160 attendees, including 15 families representing the SRF community and 8 diagnosed SYNGAP1 children and adults ranging from ages 4 to 67.

The night was filled with making connections, laughter, tears, and moments that touched our hearts. From the inspiring speeches to the generous pledges, every aspect of the gala reflected the spirit of giving that defines our mission.

The evening was led by our talented emcee, John Hill. He brought his fundraising experiences along with his personal connection to SYNGAP1 as his grandniece, Keira, was diagnosed one year ago.  

The night consisted of a cocktail hour, where guests bet on silent auction items ranging from jewelry to sports memorabilia and vacations. About an hour into the event, everyone proceeded to the dining room, where we introduced our keynote speaker, Michael Boland, Ph.D. from UPenn, and the Children’s Hospital of Philadelphia’s Epilepsy and Neurodevelopmental Disorders (ENDD) program. This center is currently investigating therapies for two rare diseases including STXBP1 and SYNGAP1.

Dr. Boland shared his excitement and passion for the recent developments his team has uncovered, especially since his own son was diagnosed with STXBP1 in 2018. Although the majority of the guests were not science professionals, he did a fantastic job of explaining the disease and technology in a way that everyone would understand. I couldn’t help but think about the “When the Scientist Presents” book from the leadership and communication course!

We also had two other presenters, both of whom are SYNGAP1 parents. Ellen Feldman shared her emotional journey advocating and supporting her adult son, Matthew age 41, through his SYNGAP1 diagnosis. There was not a dry eye in the room, and I think that this mother drove many of the donations we received at the end of the night. Matthew’s beautiful artwork was sold during the silent auction, with all proceeds going to SRF.

Lastly, a SYNGAP1 father and BOD member, Pavel Gerovich shared the achievements the SynGAP Research Fund made in 2023, and what we’re looking forward to in 2024. Between the three speakers, we successfully educated and motivated the audience to participate in the next event of the night; the live auction and paddle raise.

We are deeply grateful for the overwhelming support we received. The event was a testament to the power of the SRF community and the collective will to make a difference as we exceeded our past two years of fundraising with a total revenue of $113,000 and still counting! The funds raised will help us continue our research and make a positive impact in the lives of our loved ones.

We are especially thankful to our 2023 Gala sponsors!

We are already looking into next year’s gala, as we will need a location that can accommodate a larger crowd. We hope to see you there!