Corey Baysden

#RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID

[Corey Baysden @CoreyBaysden]

This exciting study is open to all Syngapians ages 0+!

Visit https://t.co/IsNHBI3yOc for more information!

@cureSYNGAP1 #SYNGAP1

[Corey Baysden @CoreyBaysden]

Wrapped up the 2024 Syngap Research Fund Conference in LA! 🧬💙
Grateful for the amazing family connections made and inspired by the groundbreaking research from top universities and labs worldwide. Hope is stronger than ever!
#Syngap1 #RareDisease #HopeForACure @cureSYNGAP1

[Corey Baysden @CoreyBaysden]

Today, on #RareDiseaseDay, we honor all affected by conditions like #Syngap1. Since Saylor's dx, our journey has been a mix of challenges & blessings. Let's also recognize the unsung heroes—teachers, caretakers, therapists—who play crucial roles in our journey 💜🧬🙏@cureSYNGAP1

[Corey Baysden @CoreyBaysden]

While we were admitted @WCMpeds brought her toys to play with, water color paints & sent a music therapist to keep her spirits up! 🥰🎶

[Corey Baysden @CoreyBaysden]

Saylor received her 1st dose #Ravicti thanks 2 @DrZachGrinspan @WCMpeds. Leading our 1st #SYNGAP1 drug trial. Ravicti, orig. 4 urea cycle disorders, now explored in preventing seizures and helping cognition. We 😍 this opp. & remain hopeful for 🙌 outcomes! @cureSYNGAP1

[Corey Baysden @CoreyBaysden]

Saylor also had to have a 48hr VEEG. The team @WCMpeds was amazing! They took their time putting on each lead & made sure she was comfortable the entire 2 hrs it took.

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

Where is the best list of public drug repurposing wins for rare monogenic CNS disorders? @ClementYChow @rarebasepbc @omidkarkouti @eperlste @onnofaber @JMGraglia

[Corey Baysden @CoreyBaysden]

So proud of this sweet girl! #syngap1 #AutismAwareness #intellectualdisability #Neurology
@cureSYNGAP1

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

NEWS! @julietkknowles of @Stanford_Neuro awarded $1⃣3⃣0⃣,0⃣0⃣0⃣ to study maladaptive myelination 🧠 & epilepsy⚡️ in #SYNGAP1 🧬, testing in SRF supported 🐭 models from @rhuganir.
#collaboration 🤝

👉 @cureSYNGAP1 Grant applications due in 15 days.

https://t.co/n5WhUbOa5K

[Corey Baysden @CoreyBaysden]

So great to hear from Suzanne 💜 Thankful to have her part of our team!

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

ICYMI - #SYNGAP1Stories Episode 14 with SRF BOD Chair Suzanne Jones, featuring Jansen. Have you heard it? Have you subscribed?

https://t.co/FS4pGlgXTL

[Corey Baysden @CoreyBaysden]

Saylor was able to participate in this study! Great work Dr. Frazier & team

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

#SYNGAP1 families participated in an eye-tracking study. It's in the press @AJMGEditors!

https://t.co/BCd3y7S6Di

#Research #Autism #GeneticDisorders #Science #Studies

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

There is no cure for #SYNGAP1, but SRF and its extensive team of volunteers are working daily toward that goal. Together, we can do great things!

#SYNGAP1Conference2023 #Volunteer

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

Today, June 21, is SYNGAP1 Awareness Day!

#SYNGAP1 families need family and friends to form a community of support. SRF needs similar support to help us achieve our ultimate goal of finding a cure. #strongertogether

https://t.co/Xja8bgOndB
https://t.co/D9HtimkP4q

[Vicky Arteaga @VickyAArteaga]

Es un honor participar y representar a @cureSYNGAP1 como panelista compartiendo la historia de nuestra hija Amelia y la importancia de las organizaciones de pacientes que logran cambiar el rumbo de la enfermedad.
@cureSYNGAP1 @SMNPediatrica @mexico #Chihuahua #Neurology

[Corey Baysden @CoreyBaysden]

Saylor is excited too!

[Corey Baysden @CoreyBaysden]

Thank you @ClementYChow for your hard work on #Syngap1! We truly appreciate it! @cureSYNGAP1

[Clement Chow @ClementYChow]

A nice write up at @KSLcom about our partnership with @cureSYNGAP1 to try to find a possible therapy for SYNGAP1. Flies to the rescue.

https://t.co/1aqvbvmboM

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

SYNGAP1 #WarriorWednesday🧬 Michael (age 2) from📍Vienna, Austria 🇦🇹“He likes slides and swings…”

Read his story & see more photos at https://t.co/akxK8CAFFD

#SRFWW no.186
#SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics #epilepsy #autism #geneticcounseling #curesyngap1

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

Our legal director Kevin Frye and CEO @JMGraglia are @StJude PTNI to learn about Pediatric Translational Neuroscience alongside 3️⃣0️⃣ Patient Advocacy Groups. We are ensuring that #SYNGAP1 is part of the conversation & our patients will have every opportunity for new therapies.

[Corey Baysden @CoreyBaysden]

@JMGraglia @cureSYNGAP1 @curestxbp1 @PennMedicine @ChildrensPhila @Prosser_Lab @EAHellerPhD @IngoHelbig @JillianLMcKee @SydneyStel @charleneson @NolanJoeylynn @SarahRuggieroGC @JulieXXian @SyngapNetwork This little one is excited and thankful as well! 💜🧬 #syngap1

[Corey Baysden @CoreyBaysden]

This little one is excited & thankful as well! #syngap1

[Corey Baysden @CoreyBaysden]

So thankful for everyone involved in this venture! 💜💪🧬

[Mike Graglia 🌻 @JMGraglia]

Fabulous visit to Philadelphia! @cureSYNGAP1 & @curestxbp1 met with the ENDD teams at @PennMedicine & @ChildrensPhila.

ENDD Program is the end of excuses re treating #SYNGAP1 & #STXBP1. The incredible souls in these photos can do this.

We are excited to partner with ENDD.