The inaugural Night of Impact Gala was held in San Francisco on May 28, 2026. Three attendees share their reflections on the evening. We’re hoping to hold this event again next year – stay tuned for details on all upcoming events as well as all SYNGAP1-related news on Mike’s CURE SYNGAP1 Podcast.
Suzanne Jones has been the CURE SYNGAP1 Board of Trustees Chair for three years. Her family lives in Atlanta, Georgia and includes 15-year-old Jansen, diagnosed with SYNGAP1-Related Disorders in 2021. Her recap of the night was posted on LinkedIn:
J. Michael Graglia and Ashley Evans did it! I knew they could. They just needed a little prodding (aka competitive smack talk 😬) and an incredible volunteer crew.
Their CURE SYNGAP1 Night of Impact was a smashing success! With 170 attendees and more than $830k raised (including their generous match), the night was unforgettable for our community.
Highlights include:
13 SYNGAP1 families in the room, including Kathryn Helde (CURE SYNGAP1 CSO), who filled a table with friends and family; Ed Warshauer (Board Trustee), who packed a table; and Suzanne Jones (Board Chair), who hosted a table of Duke and San Francisco friends. Additional Trustees Eric Moulton and Craig Bower flew in to represent and connect with our California SYNGAP1 families—including a special Syngapian in attendance, Nigel Falconer.
Biopharmaceutical companies showed up in support of our mission. From CAMP4 Therapeutics, Stoke Therapeutics (alongside Trayt Health Founder & CEO), and Acadia Pharmaceuticals, to BioMarin Pharmaceutical Inc., Ultragenyx, and GondolaBio (part of BridgeBio) we had a clear demonstration of our partnership with industry.
Physicians and researchers turned out. Representing Stanford en masse, UCSF, and Berkeley, these brilliant minds underscored the critical momentum behind our science.
So many rare disease PAG and industry friend were in attendance. Founders and leadership from CURE NDD, SET1B, ReNU Syndrome, NeuCyte, Citizen Health, and Mahzi Therapeutics—alongside the Global Genes & STXBP1 CEO who is the same incredible person.
Heartfelt testimony from Ashley and her son, John, as well as words from Kathryn Helde and Mike, rounded out the program. This complimented a motivational talk from keynote speaker, Dr. Helen Rankin Willsey, who charmed the room with her humor and intellect.
San Francisco corporate powerhouses seated among us understood our mission’s breadth of scope. Simpson Thacher & Bartlett LLP, EY, Paul, Weiss, Rifkind, Wharton & Garrison LLP, Kirkland & Ellis, and Sconset & Mill were well represented, alongside Ashley’s and Mike’s friends from all aspects of their lives.
The evening was deeply moving, showcasing the incredible strength and drive of our small but mighty CURE SYNGAP1 community. We have Mike and Ashley to thank for their vision and relentless dedication. It was magical to bring their friends, neighbors, and colleagues along for the ride—all of whom stood witness to the fact that CURE SYNGAP1, 501(c)(3) FKA SynGAP Research Fund (SRF) is for every single family affected by this diagnosis.
The overwhelming generosity displayed at the Night of Impact doesn’t just fund research grants; it injects vital speed into our timeline to find a cure and fuels hope for 1,806+ global families.
As a SYNGAP1 mom, I am so grateful to Mike and Ashley for their leadership and incredibly proud to work by their sides turning collective hope into a reality for all of our children.
Sara & Craig Bower, parents of Syngapian Camden, reside in Kansas and are active volunteers with the CURE SYNGAP1 community. They share the following recap:
The Night of Impact Gala at the City Club of San Francisco was an evening filled with hope, connection, and purpose. Decorated in SYNGAP1 colors of blue (representing Autism), green (Intellectual Disability), and purple (Epilepsy), the venue brought together families, researchers, investors, and supporters united by a common goal: a better future for those living with SYNGAP1-Related Disorders (SRD). During dinner, each table featured a story about a Syngapian and what a cure would mean for them, helping put faces to the mission and reminding everyone why our work matters.
One of the most powerful segments of the evening was simply being in the room with other families. This journey can be incredibly isolating. It is not always easy to find others who truly “get it.” But on this night, we stood side by side with parents who live this reality every day. While those families are always a phone call or text message away, being together in person, sharing the same space, was something special. It was a rare and powerful reminder that we are not walking this road alone.
The program featured heartfelt remarks from Ashley Evans, co-founder of CURE SYNGAP1 and mother to Tony, along with her son John, who shared with the entire audience his hopes for the future with his brother. Their words brought many of us to tears. Kathryn Helde, Chief Scientific Officer of CURE SYNGAP1, spoke about the scientific strategy behind the organization’s work before introducing the next speaker.
SYNGAP1 researcher and recipient of multiple grants from CURE SYNGAP1 Helen Willsey, PhD presented highlights of the progress being made and the urgency of continuing to push the science forward. CURE SYNGAP1 co-founder Mike Graglia also spoke about the path ahead, our 2025 Impact Report, and the need to keep moving with purpose.
A powerful testimonial video from families living with SRD gave attendees an honest look at the realities of the disorder and the impact a cure could have. Led by the enthusiastic Emily Quinn, the fundraising portion of the evening raised an impactful amount, including a generous match from Mike and Ashley.
As Camden’s mom, I left the evening encouraged and inspired. Seeing families, researchers, and investors gathered in one room, all committed to the same goal, was a powerful reminder of what is possible when a community comes together. Science is making progress, but as Mike said, “Time is brain.” Continued support and investment are critical as we work toward treatments and ultimately a cure for our loved ones.
Alana Kapust attended the event through Zoe Bailey, Volunteer Coordinator for CURE SYNGAP1 and mother of Syngapian Kaia. Below is Alana’s unique perspective of the night:
I feel incredibly grateful to have been introduced to the SYNGAP1 community through a dear friend whose wonderful child has a SYNGAP1 diagnosis. I had the privilege of volunteering at the SYNGAP1 Night of Impact fundraiser, helping with guest check-in and later assisting during the paddle raise. It was an experience that was meaningful and taught me a lot about the SYNPGAP1 community.
What stood out to me most was seeing families, physicians, and researchers all in the same room, united by a shared purpose: improving the lives of children and adults living with SYNGAP1. It was inspiring to witness the genuine partnership between the scientific community and the families whose advocacy fuels so much of this important work.
I was especially moved by several researchers who shared that they have never worked with a community as engaged and dedicated as the SYNGAP1 community. These families don’t simply hope for progress, they help create it. They organize fundraisers, connect directly with researchers, build resources for one another, and tirelessly advocate for better treatments and, ultimately, a cure. Their commitment to one another is extraordinary.
Learning more about SYNGAP1 and the profound impact it has on individuals and families gave me an even deeper appreciation for why this community is so passionate and determined. Their resilience, love, and hope are truly remarkable.
I was also amazed by the generosity in the room. Having served on the board of a nonprofit organization for more than a decade and participated in many fundraising events, I have never witnessed anything quite like the paddle raise that evening. The level of generosity was humbling and inspiring, and it left me with a genuine sense that meaningful progress is possible when a community comes together with this much heart and purpose.
It was an honor to be a small part of such a special evening. I left with a deep admiration for this incredible community and so much hope for the future of everyone living with SYNGAP1.
