CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)

🙏🏼@StanMedMag for this article about SRF funded work in @julietkknowles lab featuring our founders - Ashley & @JMGraglia - and son Tony. Special thanks to our donors for making this work possible. #SYNGAP1 #Epilepsy #RareDisease #PatientAdvocacy #HOPE stanmed.stanford.edu/epileptic-seiz…

We are just days away from the inaugural CURE SYNGAP1 Night of Impact. We can’t wait to see you next Thursday, May 28th at the City Club of San Francisco! 🌉 Get ready for an evening of inspiration, community, and a shared commitment to finding a cure for SYNGAP1. We have an incredible program lined up, and we are so grateful to everyone joining us to make a difference. ✨ Reminder: Doors open at 6:00 PM. Safe travels to everyone heading to San Francisco. Let’s make this a night to remember! A special thank you to our National Sponsors, Simpson Thacher & Bartlett LLP, CAMP4 and Praxis for making this night possible. #SYNGAP1 #CURESYNGAP1 #SFNightOfImpact

The 2025 CURE SYNGAP1 𝗜𝗺𝗽𝗮𝗰𝘁 𝗥𝗲𝗽𝗼𝗿𝘁 is here. In one year, our global community: • Raised $𝟮.𝟮𝟱𝗠 • Invested $𝟭.𝟳𝟵𝗠 into research • Awarded 𝟭𝟲 grants • Expanded ProMMiS to 𝟯 major clinical sites • Reached 𝟭,𝟳𝟬𝟳 identified patients across 𝟳𝟳 countries But the real story is bigger than the numbers. 2025 was about building momentum toward clinical trials, strengthening partnerships, supporting families, and accelerating the path to effective therapies for SYNGAP1-Related Disorders. Read and download the full report at cureSYNGAP1.org/Impact and find the accompanying press release at: cureSYNGAP1.org/PR47 #CURESYNGAP1 #2025IMPACTREPORT #RAREDISEASERESEARCH #SYNGAP1 #SYNGAP

CURE SYNGAP1 continues to invest in companies, people, and work that will directly and importantly impact our families and help our patients receive the best chance for a cure as quickly as possible. "This multi-year funding ensures that the patient voice is rigorously captured and integrated into the clinical development pipeline for SYNGAP1-Related Disorders." Read more 👉 cureSYNGAP1.org/PR46 #CureSYNGAP1 #SYNGAP1 #PatientAdvocacy @RARE_X_

"By participating, you are not just raising funds—you are joining an international movement of people dedicated to making a tangible difference." 💜💙💚 Read the blog post about Sprint here: cureSYNGAP1.org/Sprint26Recap 🏃 🏁 #CureSYNGAP1 #SYNGAP1 #Sprint4Syngap #Sprint26

New Episode Alert! 🚨 Episode 041 of #SYNGAP1Stories is officially live. Mike Graglia shares a heartfelt family update that will resonate with the entire community. If you’re a #SYNGAP1 parent or guardian, this is a must-listen. 🎙️✨ "When your kids are tiny, we've all said it ... 'Nobody can take care of this kid but us!' And we believed that ... until about a year ago...." 👇 Catch the full story: cureSYNGAP1.org/Stories41 #CureSYNGAP1

LAST CHANCE! 🚨 The clock is ticking, and we don’t want you to miss out. Tickets and sponsorships for our inaugural SF Night of Impact are only available for a few more days! The deadline to secure your spot is May 21st. Join us as we come together to fuel a cure for SYNGAP1 and celebrate the incredible progress of our global village. 🔗 Grab yours before they’re gone: cureSYNGAP1.org/SF26 Thank you to our National Sponsors, Simpson Thacher & Bartlett LLP, CAMP4 and Praxis, for leading the way. #SYNGAP1 #CURESYNGAP1 #SFNightOfImpact

🍎Is your end-of-school to-do list feeling impossible? We know. We are right there with you. Teacher, coach, and graduation gifts galore! 🎓 That’s why we simplified giving. You have to check off these gifts anyway—why not make them fight for a SYNGAP1 cure at the same time? 📲 The Fast & Flexible Gift: Use RaiseRight to instantly buy an eGift card (Starbucks, Target, Amazon, and Barnes & Noble) for your teacher. They get exactly what they want, and a percentage (up to 20%!) funds our research. 🎁 The Thoughtful Online Gift: Use Give Freely to shop for the perfect personalized item online. The extension automatically finds coupons and generates a donation to CURE SYNGAP1 at 1,000’s of stores. Top options for teacher gifts include Etsy, Uncommon Goods, Shutterfly, Bath & Body Works, and Container Store! Check off your list AND help fund a cure, with no added donation cost to you. Your everyday actions are our secret weapon. Start now at cureSYNGAP1.org/RRGF #SYNGAP1 #CureSYNGAP1 #RaiseRight #GiveFreely

The Clock is Ticking! ⏳ We are officially in the final stretch. There are only 3 weeks left until the inaugural CURE SYNGAP1 | Night of Impact at the San Francisco City Club on May 28th. This is your last chance to secure your tickets or finalize your sponsorship to join us for this milestone evening. Help us turn scientific potential into life-changing reality for our Syngapians. Don’t let the clock run out on your chance to make an impact! 🎟️ Secure your spot before it’s too late: cureSYNGAP1.org/SF A special thank you to our National Sponsors: Simpson Thacher & Bartlett LLP, CAMP4, and Praxis. #SYNGAP1 #CURESYNGAP1 #SFNightOfImpact

To truly understand the impact of SYNGAP1-Related Disorders, one must listen to the voices at the heart of our mission. Our latest video brings together families and researchers to discuss the reality of living with this diagnosis and the urgent need for clinical trials and treatments. Beyond the data, you’ll hear the stories of struggle, hope, and the deep dedication of a community motivated to find a cure. Whether you are a researcher, a provider, or a family member, we invite you to watch and witness our journey. 👉 cureSYNGAP1.org/SYNGAP1 If you love someone with a SYNGAP1 diagnosis, you are not alone! Connect with CURE SYNGAP1 for information, support, advice, and a community that "just gets it!" cureSYNGAP1.org/Connect 💜💙💚 #SYNGAP1 #CureSYNGAP1 #RareDisease #PatientAdvocacy #Neurology #CureSYNGAP1Conference #IntellectualDisability #LearningDisability #Epilepsy #Autism #Seizures

Congratulations to the 2026 Sprint Rifton Bike winner: Matthew Barnhart! 🚲 Thank you to all 24 of the Sprint for Syngap teams this year, you all did AMAZING! Together, the teams surpassed our goal for 2026, raising $304k!! 🥳 🙌 👏 It's because of dedicated families like you that we are closer every year to finding a cure for SYNGAP1 💚💙💜 #SYNGAP1 #CureSYNGAP1 #Sprint4Syngap

🎤 💻 New #CURESYNGAP1 Webinar with Joseph D. Buxbaum, PhD 🧬 Three SYNGAP1 studies at the Seaver Autism Center at Mount Sinai 🗓️ Thursday, May 14 🕘 9:30 AM PT 🕔 12:30 PM ET 👉 cureSYNGAP1.org/Seaver Follow our LinkedIn Account to stay up to date with CURE SYNGAP1! #SYNGAP1 #RareDiseaseResearch #SynGAP #CareAboutRare #PatientAdvocacy #Neurology #Genetics #Pediatrics #epilepsy #autism #GeneticCounseling #RareDisease

New blog! 📝 Crafts for a Cure Fundraiser ✂️ 🎨 🧑‍🎨 "During the last 6 years, we have participated in different SYNGAP fundraising events. Fundraising does not feel natural and makes me very nervous. As the years passed, I know a lot of people in my community. All I have to do is reach out and connect! This was the most fun we have had at a fundraiser and our personal record for fundraising – over $4,000!" Read the full blog here to see what it takes to host a fundraiser! 👉 cureSYNGAP1.org/Crafts26 💜💙💚 #CureSYNGAP1 #SYNGAP1 #CraftsForACure

30 Days Until the Night of Impact! 🌉 We are officially one month away from our SF Night of Impact at the San Francisco City Club. Date: May 28, 2026 Goal: To accelerate a cure for SYNGAP1 Action: Secure your spot today!   Sponsorships and tickets are moving fast as we head into our final month of preparation. Don't miss your chance to be part of this milestone event.   🎟️ Register here: cureSYNGAP1.org/SF26   Shout out to our National Sponsors, Simpson Thacher & Bartlett LLP, CAMP4 and Praxis. #SYNGAP1 #CURESYNGAP1 #SFNightOfImpact

Save the date! Scramble for SYNGAP Returns! ⛳ On October 3, 2026, Greer Golf hosts a purpose-driven tournament advancing research for SYNGAP1-Related Disorders. Hosted by CURE SYNGAP1 and managed by Colorado Under Par, this event brings together golfers, families, sponsors, and community supporters for a focused day on the course supporting patient identification, gene-based research, and treatment development. What to expect: • Four-person scramble | 18 holes • The SYNGAP1 Shot • Beat The Pro • Longest Drive (M/W) • Closest to the Pin (M/W) • Breakfast, lunch, awards & raffle Registration and sponsorship opportunities are ope‍n. Learn more: cureSYNGAP1.org/Scramble 🏌️ #Scramble4SYNGAP #SYNGAP1 #CURESYNGAP1 #ColoradoUnderPar #GolfTournament #GolfForResearch

🎤 💻 New #CURESYNGAP1 Webinar with Heather Stone, MPH 🧬 CURE ID: A Treatment Registry of Repurposed Drugs for SYNGAP1 🗓️ Thursday, May 7 🕘 1:30 PM PT 🕔 4:30 PM ET 👉 cureSYNGAP1.org/cureID Follow our LinkedIn Account to stay up to date with CURE SYNGAP1! #SYNGAP1 #RareDiseaseResearch #SynGAP #CareAboutRare #PatientAdvocacy #Neurology #Genetics #Pediatrics #epilepsy #autism #GeneticCounseling #RareDisease #CUREID #FDA #Repurposing

Today is the day! 🏃💨 The wait is finally over! We are officially hitting the ground running for Sprint for Syngap 2026. Whether you’re racing for a personal best or joining us to support the cause, your energy is what makes this event incredible. Check out our Sprint map to see if any events are happening near you: curesyngap1.org/calendar/sprin… 🗺️ Don't forget to tag us in your photos and use #Sprint4Syngap2026 so we can share your journey! Let’s make every step count. See you at the finish line! 🏁✨ #SYNGAP1 #Sprint4Syngap #CureSYNGAP1

Nuevo blog! 📝 Cuatro historias, un mismo propósito: Nuestras visitas a CHOP 💙💜💚 El trayecto fue largo: volamos de Buenos Aires a Nueva York y de ahí manejamos unas dos horas y media. La investigación es el único puente hacia un tratamiento real para el SYNGAP1. Decidimos participar en el CHOP porque sabemos que, en enfermedades tan poco conocidas, la información es poder. Donar nuestro tiempo y la experiencia de Fran ayuda a que los científicos entiendan mejor la patología, acelerando los tiempos de los ensayos clínicos. Participar en ProMMiS es mucho más que un viaje médico. Para nuestras familias, representa compromiso, aprendizaje y esperanza. Para solicitar una cita, visite cureSYNGAP1.org/ProMMiS/ Lea cuatro historias de familias sobre sus visitas a CHOP: cureSYNGAP1.org/CHOPVisitas New blog!📝 Four Stories, One Purpose: Our Visits to CHOP 💙💜💚 The journey was long: we flew from Buenos Aires to New York and then drove for about two and a half hours. Research is the only bridge to a real treatment for SYNGAP1. We decided to participate in CHOP because we know that, in such little-known diseases, information is power. Donating our time and Fran's expertise helps scientists better understand the pathology, accelerating the timeline for clinical trials. Participating in ProMMiS is much more than a medical trip. For our families, it represents commitment, learning, and hope. To make an appointment, go to cureSYNGAP1.org/ProMMiS/ Read four family stories from their visits to CHOP - cureSYNGAP1.org/CHOPVisits #CureSYNGAP1 #SYNGAP1 #ProMMiS #CHOP @ChildrensPhila @StanfordChild

The Faces of Our "Why." 💜💙💚 These are just a few of the brave Syngapians who inspire everything we do. For our children, the Night of Impact isn't just an event—it’s a promise that we will never stop fighting for a cure. 🧬 In just 5 weeks, we gather in San Francisco to turn that promise into progress. Your presence at our inaugural SF event helps accelerate the path to a cure. Let’s make May 28th a night that changes their lives forever. 📍 San Francisco City Club 🎟️ Grab your tickets now: cureSYNGAP1.org/SF26 A heartfelt thank you to our National Sponsors, Simpson Thacher & Bartlett LLP, CAMP4 and Praxis for standing with our families. #SYNGAP1 #CURESYNGAP1 #SFNightOfImpact

"My advice for anyone who is navigating life with a beautiful Syngapian is this – it is hard, but you are not alone. Reach out when you can, but take the alone time too. Sometimes I am super in, and sometimes I retreat. There is no right way to find the joy, and find the space to grieve. There is so much beauty in watching Daisy become the person she is...." 💜💙💚 We're in this battle together, but alone time is important too! We support you as you raise your precious #Warrior! Read more about Daisy's story 👉 cureSYNGAP1.org/Warrior 💪 When you're ready to share, #CureSYNGAP1 would love to tell your story too! #SYNGAP1 #WednesdayWarrior 🧬 #Advocate

Un nuevo episodio de Café SYNGAP1 está disponible! 🎙️ En este episodio, platicamos con Catalina Bentacur quien tiene una hija con SCN2A, sobre la importancia de salir adelante a pesar de los desafíos que vienen con vivir con una enfermedad rara. Escuchen el episodio aquí: cureSYNGAP1.org/Cafe36 ☕ #SYNGAP1 #CureSYNGAP1 #CafeSyngap1