Mill Valley, CA – May 20, 2026 – CURE SYNGAP1 501(c)(3) (fka SynGAP Research Fund or SRF) is proud to present its 2025 Impact Report , a comprehensive account of a year defined by accelerated growth and exciting breakthroughs. Building on the foundation of their inaugural report, this year’s retrospective showcases the tangible progress made by their family-led, volunteer-driven organization. Guided by their core pillars of Collaboration, Transparency, and Urgency , the 2025 report offers stakeholders a front-row seat to the latest milestones in precision medicine, expanded clinical readiness, and the strengthening of the SYNGAP1 community.
“This report is more than a summary of statistics; our 2025 Impact Report is a testament to the power of a global community that refuses to wait.”
It honors the unwavering support of their donors and the tireless work of scientists, volunteers, staff, and families. As you read through the 2025 accomplishments, you will see not just what has been accomplished, but the immense potential of what will be achieved in the years to come.
Each member of the Leadership Team provides their perspective on what the past year brought to the SYNGAP1 community and progress made as together we get closer to clinical trials and treatments for families. Every member of this leadership team is a parent to someone suffering from SYNGAP1-Related Disorders.
Founder/CEO Mike Graglia , MBA, MA, discusses the 2025 rebrand to CURE SYNGAP1, vital partnerships, and putting skin in the game. “The excitement of imminent clinical trials for SYNGAP1 and other similar developmental epileptic encephalopathies (DEEs) pushes us forward every day. As we tackle obstacles known and emerging, our goal remains: to reduce suffering in our kids and their families – all of them – wherever they are in their SYNGAP1 journey.” Mike and co-founder Ashley Evans are parents of Tony , aged 12.
President/COO Virginie McNamar comments on community engagement, clinical trial readiness, partnerships and global collaboration, and advocacy and regulatory engagement. “In 2025, CURE SYNGAP1 continued to evolve from a grassroots organization into a highly effective, mission-driven engine for progress. Our focus this year was clear: strengthen our infrastructure, invest in our people, and execute with urgency as clinical trials move closer to reality.” Virginie is mom to 10-year-old Ty .
Kathryn Helde , PhD, CSO of CURE SYNGAP1 describes CURE SYNGAP1’s accelerated impact on science, with almost $1.8M in 2025 grants, and culminating in the “most successful” SYNGAP1 Science Conference ever! “2025 blew past previous benchmarks for SYNGAP1 therapeutic success, such as an increase in published papers, broader and more intensive engagement with researchers, and more plans for de-risking imminent clinical trials via development of protocols and measures.” Kathryn is mom to Joey , who is 24 years old.
Stefanie Decker , MBA, CPA, and CFO of CURE SYNGAP1 presents the measurable financial impact and meaningful progress toward treatments. “Every contribution to CURE SYNGAP1 is more than a donation. It is an investment in research, patient support, and the future of effective treatments for individuals living with SYNGAP1-Related Disorders.” Stefanie is mom to 8-year-old Saydee .
Board of Trustees Chair, Suzanne Jones , MBA, summarizes the momentum CURE SYNGAP1 experienced in 2025, listing the various fundraising events held and attended across the US. “2025 was defined by one word: Momentum. Through the tireless work of our lean but highly activated family-run nonprofit, CURE SYNGAP1 secured a remarkable $2.25M in donations in 2025. For a rare disease organization, this is more than a number on a financial spreadsheet; it is a catalyst.” Suzanne is mom to Jansen , aged 15.
With a successful 2025, hope is higher for the SYNGAP1 community than it’s ever been before!
Mike shares his strategic vision for 2026: “Our laser focus will be on getting into the clinic and expanding access to better medicine for all SynGAPians. We will continue to support and activate every family in our community. Finally, and as always, we will fundraise to keep grants going and strengthen the organization to be a lifelong advocate for our patients.”
Virginie states that, “2025 was not a finish line — it was a foundation. As we look toward 2026, the pace will accelerate. Clinical trial activity will intensify, collaboration with industry and regulators will deepen, and the demands on our organization will continue to grow. We are ready.”
Kathryn details CURE SYNGAP1’s priorities moving forward. These include, “…finding undiagnosed patients (genetics and genetic testing); alleviating the root cause of extreme behaviors (mechanisms and drugs), and understanding where to deliver drugs, which isoforms, and determining missense disease models (deeper dive into SYNGAP1 functions). I am so excited for 2026 and the opportunity to help us advance closer to safe, effective, disease-modifying medicines for our entire community.”
Suzanne summarizes, “ three critical ways you can invest in our future right now.” [Give Time ( Volunteer ), Money ( Donate or Fundraise ), and Share Data ( Natural History Studies , Registries , Studies , and Trials )]. The future we have dreamt of is no longer on the horizon; it is at our doorstep, and the door to tomorrow needs unlocking. But science does not move itself — people do. We are not waiting for change. We are creating it.”
SYNGAP1-Related Disorders ( ICD-10 F78.A1 ) are a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SYNGAP1 protein levels. CURE SYNGAP1 has identified over 1,761 SRD patients to date, and the number grows weekly. This protein acts as a regulator in the synapses (where neurons communicate with each other). When SYNGAP1 protein levels are too low, we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to @many neurological issues seen in SRD patients.
Symptoms of SRD include primarily neurological issues including autism spectrum disorder (ASD), global developmental delay leading to intellectual disability, epilepsy, hypotonia (low muscle tone), gross and fine motor delays, and visual abnormalities such as strabismus (crossed eyes) as well as disordered sleep and gastrointestinal challenges.
Founded in the US in 2018 as a 501(c)(3) public charity, CURE SYNGAP1 is dedicated to accelerating the availability of safe, effective, disease-modifying treatments for everyone living with SYNGAP1-Related Disorders (SRD). The same mission is shared by the CURE SYNGAP1 Collective , a global collaboration of 10 member organizations—including Syngap1 Argentina, SynGAP Research Fund Australia, SynGAP Research Fund EU, SYNGAP1 India, Fondo de Investigación SynGAP (Latin America), Razem dla Syngap1 (Poland), ASSOCIAÇÃO CSP (Portugal), SYNGAP1 España, Syngap1 UK.
By working closely with patients, clinicians, researchers, and regulatory authorities, we ensure clinical programs are scientifically rigorous and responsive to our community’s lived experience. As of December 31, 2025, CURE SYNGAP1 has committed over $8 million in research grants to drive progress toward a cure. See past Impact Reports and Annual Reports at cureSYNGAP1.org/Impact .
For more on CURE SYNGAP1, visit cureSYNGAP1.org ; subscribe to the CURE SYNGAP1 Podcast , SYNGAP1 Stories , and Café SYNGAP1 ; and follow @cureSYNGAP1 on LinkedIn , YouTube , Instagram , Facebook , TikTok , or X .
CURE SYNGAP1 is a member of FasterCures , COMBINEDBrain , Global Genes Foundation Alliance , Everylife Foundation Community Congress , Epilepsies Action Network , Personalized Medicine Coalition , Rare Epilepsy Network , Epilepsy Leadership Council , Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA), California Action Link for Rare Diseases , American Brain Coalition , Genetic Alliance UK , Rare Disease UK , Syndromes Without a Name (SWAN UK), Jumpstart Program , Patient Worthy , Autism Brain Net , Innovation and Value Initiative , Rare Disease Diversity Coalition , Cambridge Rare Disease Network , Breaking Down Barriers , Rare-X , Mencap , IndoUSRare , The World Orphan Drug Congress , and Research America .