Today is #RareDiseaseDay2023, # 7 for us since Ty’s #Syngap1 diagnosis. Still no treatment or cure but getting closer every day thanks to CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) and all the #researchers and #pharma working on #SYNGAP1 . #Rare but not alone! There is hope!

.Corey Baysden - our leader for community engagement - shares her family’s #SYNGAP1 story! Every bit of awareness helps. Thanks to WNCT for the coverage of this work. Our children with SynGAP & their families are incredible. #epilepsy #autism wnct.com/on-your-side/h…

Melissa — on the SRF Board — & her husband Michael Foster shared their #SYNGAP1 story with FOX4 News Kansas City for #Rarediseaseday. Every time we raise awareness about our patients it plants seeds that improve the future for SynGAP families. Please share. Rare KC fox4kc.com/news/kansas-ci…

#SYNGAP1 swag arrived #ENDD …in the background: our formula to analyze Ciitizen⁩ #NHS data …and Penn in the fog ⁦CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)⁩ ⁦Ben Prosser⁩ ⁦DAVIDSON LAB⁩ ⁦@EAHellerPhD⁩ ⁦Jillian McKee⁩ ⁦Julie Xian⁩ ⁦@SarahRuggieroGC⁩ ⁦

💜Did you catch this new SYNGAP1 family movie from SRF? 💙SRF director Melissa Foster & her husband Michael Foster had this moving movie made about their beautiful daughter Hattie. Please watch and enjoy at youtu.be/kRtzajoRQ4I 💚Consider secure.givelively.org/donate/syngap-…

Patient families with LGS participate in clinical trials and take survey after survey, but too often this information is not made readily available to families and to the wider research community. To advance LGS research, we must #FreeTheData. lgsfoundation.org/2022-lgs-resea…

Thank you Jazz Pharmaceuticals for your #epidiolexengage program to fight on behalf of families for access. My son has been on #epidiolex for 4 years, good seizure control and no side effect but constant battle with #insurance, hours on the phone. CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) LGS Foundation

We’re excited to announce that Phase 1 - Own Your Medical Records - of the LGS Foundation’s Learn from Every Patient Database is NOW OPEN! 👉 Learn More at ow.ly/Rivp50NwI6f 👈 #LennoxGastautSyndrome #LGSResearch #LearnFromEveryPatient #NeuroTwitter

Nathan has #SYNGAP1 and now a service dog to help! Panda is featured in oxfordeagle.com/2023/04/03/nat… as well as Episode 5 of SynGAP Stories at Syngap.Fund/Stories. #raredisease #epilepsy #servicedog #dog #curesyngap1

SRF announces $130k collaborative grant to the Tang Lab Boston Children's & Axonis Therapeutics, Inc. to see if a #KCC2 enhancing drug will ameliorate #SYNGAP1. Also quoted: Shane Hegarty, Kadam Lab & Mike Graglia 🌻. This is possible due to the generosity of our families. eurekalert.org/news-releases/…

#DYK more than 80% of cases of SYNGAP1 are caused by a haploinsufficiency of the SYNGAP1 gene? We’re working with Acadia Pharmaceuticals to research a new way of treating the disease. #SyngapAwarenessDay

Beautiful but I hate what these supermoons do to my #syngap kid. No sleep, more #seizures, crazy emotions, total mess! As anyone ever published a scientific paper on this? Also NASA when is the next one? I need to mentally prep for it.

This weekend we kickoff our 2023-24 ECNL Ohio Valley Conference slate in Cleveland with games against Cleveland Force SC & ISCgirls

We are underway at ECNL Dallas! Starting XI vs. Real Colorado ECNL Girls ECNL Ohio Valley Conference FC Pride Elite Girls ECNL

Drug screen ✅ Positive hit ✅ Patients on drug with positive results ✅ Getting a French over the counter drug approved in the US for #Syngap1 and available for entire community = new⛰️to climb and challenge accepted!

Some “freshmen to watch” from our squad: Marcy Boyle & Nahia McNamar!

Congrats Nahia McNamar & Marcy Boyle! 🗞️🗞️

It’s an honor to help lead this next phase alongside Mike Graglia 🌻 and our amazing team. Together, we’ll continue pushing forward, always fighting for all of our kids. 💪 #RareDisease #Advocacy #ClinicalTrials #cureSYNGAP1