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

#SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 🎙

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

🙏🏼@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
https://t.co/2LWeFGfrQf

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

2Q26 #SYNGAP1Census is out - 1,806 Patients (+45)
>500 in US & 1st in N Macedonia!
Thank you @SyngapNetwork (SGN) & all #SYNGAP1 PAGs!

🇺🇸 516
🇩🇪 153
🇨🇳 139
🇫🇷🇬🇧 128
🇪🇸 64
🇮🇹 63
🇳🇱 55
🇵🇱 53
🇦🇺 51
🇨🇦 45
🇷🇺 38
🇧🇷 37
🇦🇷 24
...
👉 https://t.co/mUbHNXHoOn for all details!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

🎉 Our new CURE SYNGAP1 t-shirt collection is here!

We’ve added several new designs plus past favorites like SYNGAP Warrior & LOVE HOPE CURE.

These items are available as part of a limited-time campaign, so grab your favorites before they're gone.

Every purchase helps support

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

5th consecutive year, CURE SYNGAP1 fielded a team of riders in the #PennMedMDBR2026! 🚴‍♀️

"The dedication of our cyclists, families, and donors brings us one step closer to changing the landscape of a SYNGAP1 diagnosis. Every dollar raised directly impacts the speed of scientific

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Today we #Splash4Syngap! 🌊 💧 ☀️ 💦 🏊

𝗝𝘂𝗻𝗲 𝟮𝟭 𝗶𝘀 𝗦𝗬𝗡𝗚𝗔𝗣 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆! 💙💜💚

Why 6/21? Find out here: https://t.co/ccrYHGWzQj

Raise #SYNGAP1 Awareness today so we can #CureSYNGAP1! Make a Splash, make a lot of noise and don't forget to have fun!

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Florencia loves winning medals, playing hockey, and watching The Lion King. She loves to compete, take on challenges, do things without help, and be celebrated with applause. A cure for SYNGAP1 would mean independence for Flopi.

It's Syngap Awareness Month. We're counting down t

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Emma loves swimming, dancing, Stitch, and mermaids. In the water, she is like a mermaid, confident, graceful, and even able to turn underwater. A cure for SYNGAP1 would mean hearing Emma speak in full sentences, read and write independently, and understand games well enough to pl

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Phoebe loves frogs, dancing to music, desserts, and making everyone around her smile. She is a beloved celebrity at school, known by students and staff, and her mischievous personality shines through in the way she communicates through action. A cure for SYNGAP1 would mean finall

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

June is SYNGAP1 Awareness Month! To help raise awareness, here's another blog posted by a family to help advocate for all our families 💪

"We fight for scientists and pharmaceutical companies to invest more time and resources into curing SRD. We fight to get clinical trials off

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

"A cure for SYNGAP would mean a more peaceful and stable home for our family...." 💜💙💚

As #SplashForSyngap nears, we bring you a special edition of our #WednesdayWarrior.

Read more about our latest #Warrior, Phoenix 👉 https://t.co/jwRYNzJxaI 💪

#SYNGAP1 🧬 #Advocate

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Ty was diagnosed at 16 months. He has a great sense of humor and loves making people laugh, even though he is non-verbal. Active and adventurous, he swims, surfs, skis, and ice skates. A cure would mean safety, hearing his voice, and the chance for a happy, independent life.

It'

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

"...we still face daily challenges, including communication difficulties, behavioral struggles, biting, and GI issues. But despite the hard days, every day with Kenna is a gift. Watching her work so hard, overcome obstacles, and continue to grow inspires us constantly." 💜💙💚

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Esperanza was diagnosed at 17 years old. She loves collecting stuffed animals and toys, singing, music, and Meet the Colors. She often gathers everyone in the house into her room to record them singing, like she is directing her own choir. A cure or treatment for SYNGAP1 would me

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

"Putting him in a placement...are we bad people, have we failed? What if they can do better for him than we have? What if they have more skills and more people that can better meet Tony's needs?"

As our loved ones get bigger, our challenges grow too! It's not failure to seek hel

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Francisco loves elevators, escalators, and carousels. He also loves watching friends play sports, especially basketball. A cure for SYNGAP1 would mean giving Francisco the words to tell his brother, Feli, “I love you.”

It's Syngap Awareness Month. We're counting down to 6.21!

W

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Greyson was diagnosed at 20 months. He loves anything water-related and watching fish tanks. A natural problem solver, he beams with pride when completing a task. A cure would mean Greyson being more present in daily life and letting others into his world.

Syngap Awareness Month

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Camden loves music, guitars, playing hide and seek, and being the center of attention. He lights up when there is applause and has a special way of drawing people in. A cure for SYNGAP1 would mean more opportunities for Camden to connect, express himself, and let his bright, joyf

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Emmy was diagnosed on her 2nd birthday, two years ago today! She loves water and anything that spins or lights up. A cure for her would mean her parents could finally hear her say “Mama” and “Dada” and not constantly having to worry about something happening to her if she were to

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Libertad was diagnosed at 17 years old. She loves recording videos on her iPad, bracelets, and cupcakes. She is outgoing, loves parties and family gatherings, and ends each night with the sign of the cross, five kisses, and “Goodnight, love you, see you tomorrow!” A cure for SYNG

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Tony was diagnosed at age 4. He moved to Kansas earlier this year when the local CA schools couldn't accommodate his needs. He has discovered that there is no place like home. A cure would bring his family back together and give all of them a chance to enjoy life more fully.

It

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

Join DEE-P and the KCNT1 Epilepsy Foundation for a webinar where Dr. Olivia Kim-McManus will be discussing ASO therapies, informed consent, and important considerations for families navigating emerging treatment options.

⏰ The webinar will take place on Tuesday, June 30th at 1: